Time is precious – waste it wisely

I had approximately seven weeks until my mastectomy and reconstruction surgery and I certainly made the most of it!

The first thing was a one-night only camping trip we had planned with all of our immediate family plus my brother-in-law, our two nieces and their families. The idea was that we could all spend some quality time together just chilling out and with no-one having to do a long journey home at the end of the evening. For us it was very local, just a few miles up the road at a rural campsite called ‘Little Downash’ in Hailsham. The setting is idyllic with a small lake and surrounded by beautiful countryside. We booked fully-equipped bell tents which were all together and the owners had organised all the pallet furniture into a square so we had a communal outside sitting area. There were also two barbecues and three fire pits!

The trip had been booked for a while and no-one had realised it would be the same time as the Champions League Final – Liverpool vs Real Madrid. Oops! As Liverpool supporters (and generally big football fans) this was not a good thing. So what did my husband do? Well, he was straight on to Amazon and purchased a ‘Jackery’, a portable power generator – of course! I can’t bring myself to say how much it cost! So they also transported a laptop and a large TV and rigged it all up in the boot of my nephew’s estate car!

First though we cooked on the barbecue and played a couple of games. One was the ‘spot’ game which was played throughout the evening. It consists of renaming everyone present and requires coloured stickers in the shape of spots. From the start of the game you are no longer allowed to refer to anyone by their actual name. Everyone had a label with their new name on. I was ‘Fanny’ and my husband was ‘Dick’! Other names were Wally, Willie, Boris, Marge, Maud….you get the gist! Every time you call someone by the wrong name you have to wear a coloured spot on your face! The kids thought it was hilarious! We were all very spotty….

The second game was suggested by me but had an ulterior motive behind it. Our son had announced on holiday in April that his girlfriend was pregnant but it was still being kept under wraps as she had found out so early in the pregnancy. The majority of us knew but we had not told my dad nor one of my nieces (who was also expecting). We were worried one of us might slip up and mention it so they agreed to the others knowing. I came up with the idea of playing ‘2 lies and a truth’ – a spin on ‘2 truths and a lie’. You will understand why we changed it when you read on! Everyone was warned in advance to think of their three statements and we went round one at a time deciding which of the three statements was in fact true. Our son was the last to play. He stated that 1) he and his girlfriend had booked a trip to India 2) that his girlfriend always dyes his beard for him and 3) they were having a baby. Surprisingly the answers were closely analysed! The first one was dismissed but there was quite a big debate about the dyeing of his facial hair! Then the penny dropped….my niece started screaming “Oh my Gosh, you’re having a baby!” I hadn’t told anyone else that this was the reason we were playing the game so they weren’t expecting a cryptic announcement either! I don’t think any of us will ever forget how that news was delivered to the rest of the family! Well, apart from my dad who took his time to click….bless him! He had no idea what was going on and we still had to actually tell him!

In typical British camping style, it started to rain just as the match started. Did it stop us watching though? Of course not, we had tarpaulin to protect the electrical equipment (not sure that would have passed any health and safety assessments) and we all had raincoats and umbrellas! The little ones amused themselves most of the evening with glow sticks and enjoying the freedom of all the space! Sadly the weather was indicative of the result with Liverpool conceding a goal in the 59th minute and losing 1-0. “Hey ho, it’s only a game!”… said no Liverpool supporter in my house ever! The mood wasn’t completely spoilt though. One thing I can say about football in our household is that they genuinely move on and don’t dwell on it.

Despite several layers of clothing and blankets, it was a very chilly night in the tent! However, the next morning was blessed with glorious sunshine and a stupendous full English breakfast! There were a couple of sore heads but the clearing up was a good joint effort and didn’t feel like a chore as we all mucked in. The campsite is in a beautiful peaceful area (until we arrived….!) and there were a couple of paddocks with ponies in, including tiny little Shetland ponies, one no bigger than a large dog! We were able to see them from a gate and they ambled over for some fuss much to the delight of the little ones. All-in-all it was a wonderful weekend in a perfect setting.

“The best days are when you don’t need anything extreme or special to make it great. You just appreciate and enjoy what is and that’s perfect enough.” – Amber Rae (writer, illustrator and speaker).

I also had a chance to go to the theatre a couple of times during that ‘grace’ period, one of my greatest pleasures. A large group of us went to see the hit musical ‘Six’ and it was amazing! It’s so dynamic and energetic as well as funny. An absolute genius way of telling the story of Henry VIII’s wives.

I had tickets to see ‘Mary Poppins’ in the West End in early 2022 with my best friend but unfortunately it was booked for 14th January which was only 9 days after my lumpectomy so sadly we had to cancel. We got a refund and waited to reschedule until we knew I would definitely be able to go. We finally went in June and had a lovely day in London. We had amazing seats in the stalls and the show was every bit as spectacular as we had hoped it would be.

“When the world turns upside down, the best thing to do is turn right along with it.” – Mary Poppins

I also had an unexpected invite to go to ‘Abba Voyage’ at the purpose built Abba Arena at the Queen Elizabeth Olympic Park in Pudding Mill Lane, East London. Sadly my cousin had Covid and couldn’t go so I was offered the ticket. If you haven’t heard of this event it is a virtual concert with virtual avatars depicting the group as they appeared in 1977. The digital versions of ABBA have been created with the four band members wearing ‘motion capture’ suits and the deployment of 160 cameras. It is absolutely insane and almost impossible to describe – seeing is believing! It’s so lifelike you really feel like they are all on the stage in front of you whereas, effectively, you are looking at an empty stage. In fact you’re not even looking at a stage, you’re looking at hundreds of square feet of LED walls. Despite that, it is a completely immersive experience. The members of ABBA are in full 3D. They can turn, pass in front of each other, and are fully formed. But on stage they are a flat 2D image on a 65-million pixel giant LCD (Liquid-Crystal Display). There is a 10-piece live band and backing singers alongside the group’s voices. There are even screens up on either side of the stage so you have an opportunity to really scrutinise the images. We were in awe, it was so clever. Apparently, the project is one of the most expensive live music experiences in history, with a budget of $175 million! At the end of the show we got very excited as the band ‘as they are now’ came on stage to take a bow…..or so we thought! We were screaming “Look, it’s really them!” It wasn’t! That’s how convincing it was. Whether or not you are an Abba fan, I would highly recommend going to this just to witness the phenomenon of technology involved. It’s a unique experience but I wouldn’t be surprised if we don’t have a chance to see the likes of The Beatles, Elvis Presley or David Bowie in this way in future productions….

“What would life be? Without a song or dance what are we? So I say thank you for the music. For giving it to me” – Benny Andersson & Björn Ulvaeus

Another highly significant event during that time was the Queen’s Platinum Jubilee, the first British monarch to ever achieve this. We joined the rest of the nation in celebrating 70 years of Queen Elizabeth II serving as our head of state. In terms of how we would spend our day was a no-brainer – family, friends, beach hut, food and drink! I had messaged my beach hut ‘neighbours’ asking if others wanted to celebrate together and a few did. We all did our own thing but shared the atmosphere of the day. We had a traditional British spread of food – sandwiches, sausage rolls, Victoria Sponge, strawberries and cream and so on! As always I went to town on the theme and we had Union Jack napkins, a large Union Jack flag flying from the roof of the hut, ‘Jubilee’ strawberry flavoured gin and a commemorative tin of cookies shaped like a castle from good old M&S, red white and blue bunting (crocheted by me) and even a box of Buckingham Palace tissues! The star of the show though was Her Majesty herself! A couple of the girls who work for my husband had made a lifesize cutout of the Queen and smaller ones of her Corgis! They had researched her actual height and printed off sections of a photo, precisely joined them all up and mounted them on to cardboard! It was absolutely brilliant! When we arrived at the seafront and were unloading I made a few people smile as I carried Her Majesty to the beach! One family even asked if they could take a photo of their children with her! The girls had also laminated and cut out photos of the Queen’s face which I attached to wooden kebab sticks for us to hold up to our faces! Some of us wore red white and blue including accessories and we all had a great day. I think we did the Queen proud with our efforts!

The best thing about memories is making them….

It’s not easy getting on with your life when you know you have tough times ahead but life is so precious and not everyone has the chance to do the things they enjoy. Of course there was a big cloud hanging over me during that time but I also knew that I was going to be restricted for however long my treatment and recovery would take so why waste the time I had while I was feeling well enough to get out and about?

“Life comes with no guarantees, no time outs, no second chances, you just have to live life to the fullest; laugh as much as you can, spend all your money, tell someone what they mean to you, tell someone off, speak out, dance in the pouring rain, hold someone’s hand, comfort a friend, pig out, fall asleep watching the sun come up, stay up late, be a flirt, smile until your face hurts, don’t be afraid to take chances or fall in love .. and most of all live in the moment because when you look back someday knowing you have no regrets – it’s going to be what makes you smile.”

To be Prepared is Half the Victory

Five months from my initial diagnosis in Brighton, I had endured 6 mammograms, 3 ultrasounds, 2 CT scans, 2 biopsies and 2 general anaesthetics. I also had an MRI but that wasn’t related to my cancer. Apart from the MRI, all of the above ultimately led to the main event, a mastectomy and reconstruction.

Despite the date for surgery still being undecided, the Queen Victoria Hospital wanted to get me in for the pre-op assessment as soon as they could so that I would be ready as soon as a date was set. They asked me to attend the appointment on 26th May 2022. As I had recently had two previous pre-op assessments I mistakenly thought this one would be pretty much the same.

My husband was chasing his tail with work so, rather than ask him to take me, I asked a friend who kindly agreed. Because some Covid restrictions were still in place we assumed she wouldn’t be permitted to accompany me to the appointment so she waited in the car for me. I genuinely thought it was just some blood tests, MRSA swab and a couple of questions but had no idea I was going to hear all the details otherwise I would have asked if she could come in with me. I really regret not asking because it turned out to be very tough on my own.

First stop was the physical assessments – height, weight, double-checking information on forms, more blood tests and, on this occasion, an ECG (Electrocardiogram). Pretty straightforward and little that I hadn’t already done many times recently.

Next was my meeting with the Head Anaesthetist. Prior to my two earlier surgeries I had been visited by an anaesthetist at my hospital bed to go through a few important questions so I assumed it would be a similar conversation. I couldn’t have been more wrong! It was much more involved than that. He was a lovely man who spoke with compassion as he literally gave me a step by step account of what would happen on the day of surgery.

⁃ The surgery was estimated to take between 6 and 8 hours

⁃ I would be catheterised as it is not good to have a full bladder for such a long time. Also it would mean I wouldn’t have to worry about getting out of bed to use the toilet directly after the operation. The nurses would make sure I was able to walk a few steps before removing the catheter the day after surgery.

⁃ I have a history of severe nausea following previous general anaesthetics. However, there are various ways in which your anaesthetist can change your anaesthetic in order to reduce your chance of suffering sickness. One way is to administer Anti-sickness medication (anti-emetics) via a cannula. This has worked well for me in my recent surgeries.

⁃ I would have two drains inserted, one in my breast and one in my stomach. They would both be removed before I was discharged. A surgical drain is a small plastic tube that is sometimes used after an operation. It is put inside you during the surgery by the doctor and will stick out of your body until it is removed, usually a few days later. It connects to a small plastic bag that collects any fluid or air that has drained away from where you had the operation.

⁃ They would get me ‘up’ as soon as possible as this would speed up my recovery. He said as far as they were concerned the bed is for sleeping in only and they would encourage me to sit in the chair as much as possible post-op.

⁃ The estimated stay in hospital was two to three days. He believed that being at home promoted a quicker recovery than being in hospital.

⁃ Once the operation was completed I would be taken to the intensive recovery ward and would be observed every 15 minutes for at least the first 24 hours. They would be checking for any post-surgery complications so I could be taken back to theatre immediately if necessary. My drains would also be checked every 15 minutes to measure the output.

⁃ I would need to inject Heparin (an anticoagulant) to avoid blood clots after the operation. I would have to administer one the evening before and for a period of just over two weeks after. They would prescribe 15 syringes but said I would not need to bring any to the hospital as the nurses would do them while I was in hospital.

⁃ I would also be given a special lemon flavoured carbohydrate drink called Nutricia PreOp. It is specially formulated to help your body cope with the stress of surgery. Nutricia PreOp can make you feel more comfortable and less anxious before your operation. It can also make you feel a lot better after your surgery.

⁃ Prior to and during the operation they would administer Gabapentin. This drug helps to reduce post-operative nerve pain.

⁃ In addition to this I would have what they call pain-controlled analgesia (PCA). PCA uses an infusion pump to deliver a pre-programmed dose of an opioid medication when a demand button is pushed, in this case morphine. There is what’s called a ‘lockout interval’ which is a time period after a successfully-delivered demand dose when the pump will not administer additional opioid, even if the demand button is pushed, making it impossible to overdose on the medication.

The anaesthetist acknowledged that this was a lot of information to take in but he said it’s better to know what to expect as it can be very daunting to wake up and find yourself surrounded by lots of plastic and tubes. I appreciated him taking the time to talk me through it all. Another kind and empathetic health professional in our National Health Service.

Sometimes the strength within you is not a fiery flame for all to see, it is just a tiny spark that whispers ever so softly ‘You’ve got this. Keep going.’

Next I went in to see a specialist nurse who talked me through what to expect after my surgery. She talked to me about some of the practical things I needed to do to prepare and what my recovery would look like.

Firstly she showed me the drinks. I would take two bottles the evening before the operation and four the next morning before 7.00 am! Otherwise I would be nil by mouth from midnight the night before. She showed me how to do the injections and advised me to do them in alternate thighs as I wouldn’t be able to do them in my abdomen. I could either do them myself or ask someone to do them for me. I wanted to try myself first then I wouldn’t have to rely on anyone else to do them. My daughter is a carer and could do them if I needed her to but I thought it would take the pressure off if I could manage them independently.

The next discussion was something I had not previously been told about. The nurse showed me some support underwear that I would have to wear 23/7 for six weeks after surgery, only removing them for showering. They had to be medium control pants and go up to just below the bust. Use of post surgery compression garments is proven to be incredibly effective in aiding recovery from plastic surgery. They protect wounds from unnecessary abrasions, while providing sufficient support and preventing lymphoedema. They may also provide pain relief helping to minimise swelling, improving blood circulation, while reducing pain. She showed me some examples and a few tips on the best places to buy them, based on other patients’ experiences. She advised me to have at least two pairs.

As with my lumpectomy in January I would also have to wear a post-surgical bra and surgical stockings 23/7 but this time for six weeks, not two. Oh joy!

The nurse said that I would be able to have short, light showers as the dressings would be waterproof. I was pleased about that. It’s horrible when you can’t wash properly.

She also gave me a leaflet containing a chart of when it was ok to do everyday activities. For the first two weeks I would be able to do very little. No lifting including a kettle, anything that required standing up for more than a few minutes and any form of stretching my arms in the air or anything that would stretch my tummy. I would not be able to stand up or lie down completely straight for at least the first few days. The chart was divided up into week 1, week 2 and went up to three months. It included when you can drive, do fitness/sport, housework and so on. In some instances it suggested a timescale and also said ‘or when it feels comfortable to do so’.

Finally she advised me what to take into hospital with me and to pack for five days to be on the safe side. At one point I felt really panicky. I thought I was going to be sick and my eyes started welling up. Although everyone I had seen that day had been really kind I was totally overwhelmed.

I had one more thing to do before leaving. I had a prescription to collect from the hospital pharmacy. I picked up the six bottles of drink, a box of syringes of Heparin and a little yellow disposal bin for the used needles. The pharmacist gave me all the details for collection of the bin when I’d used the last injection. Then I walked out of the hospital with my large paper carrier bag of scary stuff!

When I got back to my friend’s car and started to tell her all about it I did actually cry. She felt bad that she hadn’t been there but it wasn’t her fault. I should have asked if she could come with me. I soon recovered and it helped to tell another person while it was all fresh in my mind so I would be less likely to forget any of the important bits. We did have a bit of a laugh when I told her about the chart and she said “you could put that on your fridge so the family can all see it” with which I replied “Sod that! They don’t need to know. I’m going to milk it for all it’s worth!”

It was all beginning to feel very real and scary….

A woman’s strength isn’t just about how much she can handle before she breaks. It’s also about how much she can handle after she’s broken.

Not long after that appointment I was finally given a date for the surgery – 14th July 2022. Although it still seemed quite a long way off, in the grand scheme of things I was okay with that and it meant that I would have a few weeks of relative normality to do the things I was worried I was going to miss out on.

“Patience is not the ability to wait, but the ability to keep a good attitude while waiting.” – Joyce Meyer (author).

Adversity is preparation for greatness

I had already taken my first step towards a bit of normality when I returned to work in the last week of March 2021, one week before the Easter holidays. As I knew I would be taking more sick leave at some point it was decided that I would not pick up my full caseload for the time being. It can be very confusing for the network around the child if they don’t know who they should be liaising with so I stayed in the background and the staff cover remained as it was until such time as I could fully take the cases back on. I had some online training to get on with, supervision of my allocated caseworker and some specific projects to keep me busy.

Since taking on my new role as Education Support Officer back in October 2021 I’d had very little chance to get into the role. My head teacher allocated a family to me who were very complex. They were six siblings with a gypsy/Roma background who had all been taken into care but were not all in the same care placement. Their education history was full of gaps and it was difficult to determine their academic ability in terms of chronological age. Understandably they also struggled to manage school, finding it hard to fit in the mainstream environment and the older girls were fiercely defensive of their traveller heritage and lifestyle. This led to regular altercations in school and difficulty regulating their emotions, often resulting in exclusions. It was a difficult piece of work and remains ongoing nine months on. They have now had several different placements and the older girls have also had regular ‘missing’ episodes, having absconded from their placements. Two of the girls had been placed with a very experienced carer who was rarely phased by the extreme behaviours of the young people in her care. However, tragically the foster carer was taken ill very suddenly and was admitted to hospital. She was diagnosed with bacterial Meningitis and had to be put into an induced coma. Sadly she passed away. It was a huge shock for everyone as many of us had worked with this lady for years and had a huge amount of respect for her. She was brilliant to work with and left a massive void in the fostering team who were all incredibly sad. Although the two girls had only been in the placement for a short time, the affect on them would have been equally as devastating for them. As if they hadn’t already had enough trauma in their lives. They of course had to be moved again and the pattern continued where they put themselves at risk again and again.

“Diversity is about having a seat at the table. Inclusion is having a voice. Belonging is having that voice be heard.” – Liz Fosslien.

I also had (and still have) a number of particularly complex young people on my caseload who I took back for a few weeks. It meant that the caseworkers who had been covering for me could have a breather as they all had their own busy caseloads and some of these young people take up a huge chunk of everyone’s time.

As it turned out I was able to return for almost the whole of the next two terms taking my next period of sick leave just one week short of the summer break. During that time I picked up a couple of my cases where the young people were placed out of county and I attended a few online meetings. I was also able to attend some meetings for digital projects and felt that I made a contribution to those. It was nice to be back but also felt a bit strange. It was like being a ‘ghost’, there but not fully there! My ‘out of office’ assistant stated that I was working but in a reduced capacity so that other professionals were aware of my situation, not necessarily the full reason as I didn’t want to talk about it to everyone. I told a few people who I work very closely with but otherwise I didn’t tell people exactly what was going on for me. That was another reason we agreed on my role for that time as my managers understood that it might be difficult for me if people asked questions that I preferred not to answer at that time. Our meetings can be very stressful and emotional and I wasn’t feeling as mentally robust as I normally would. After 17 years I was used to listening to and being part of difficult and unpleasant discussions but there are times when it’s hard to fight the emotions. I am human after all and you’d have to be a very hard person to never be affected by the suffering of the children and young people we work with.

“Instead of raising children who turn out okay despite their childhood, let’s raise children who turn out extraordinary because of their childhood” – L.R.Knost (author of Two Thousand Kisses a Day: Gentle Parenting Through the Ages & Stages).

I was still in limbo in terms of not having a date for surgery but I was in a better state physically to get out a bit and catch up with friends. It was also an opportunity to spend some time enjoying tea and cake at my beach hut, chatting in the sunshine and getting my much needed dose of ‘vitamin sea’! I had a few meals out and one day a friend treated a few of us with a free pass for a morning in the spa at Bannatynes Health Club followed by lunch.

My husband and I had tickets to see Corinne Bailey Rae at the Dela Warr Pavilion on 3rd May and I’d been doubtful that we would be able to go but, due to the delays, we managed to see her. She was amazing, as always.

We had booked a few nights away at the end of June to celebrate our 30th wedding anniversary. We had never been to the Lake District and I found a very cute little wooden camping pod in the woods in Heaves, near Keswick. It looked like the perfect place to get away from it all and just relax. However, as time moved and fearing that I was likely to have had my operation quite close to that date we decided to change it and instead booked to go in early August. The Air Bnb host was very accommodating and moved the date for us. It was still something to focus on and look forward to.

“Life itself is a privilege, but to live life to the fullest- well, that is a choice.” – Andy Andrews (author of ‘The Traveler’s Gift, 2002).

Walking on the water involves getting out of the boat and leaving the shore.

My appointment to meet the plastic surgeon at Queen Victoria Hospital finally came round and my husband took me over to East Grinstead. To say I was nervous would be a massive understatement but it was another step towards beating cancer so I was also glad to be there at last. I was advised to expect to be at the hospital for several hours so that they could do some assessments and other parts of the process for this type of surgery.

Firstly, the surgeon was absolutely lovely and has a very impressive CV! She graduated from Cambridge University with Distinction in 2008 and in 2015 she was awarded the Intercollegiate Fellowship in Plastic Surgery or FRCS(Plast). For her outstanding performance in these final examinations she was awarded the McGregor ‘Gold’ Medal. In 2017-18 she was awarded the Lady Estelle Wolfson Emerging Leaders Fellowship at the Royal College of Surgeons of England. I was going to be in good and very safe hands (literally!).

Before doing any physical examination she discussed the plan with us. Although the referral had mentioned that I would like to be considered for a double mastectomy she didn’t talk about that so I had to bring it up. She then asked me to get undressed so she could have a look at my breasts and also my stomach. She did some measurements of my breasts to get a gauge of size and then felt around my tummy to work out how much could be used for the DIEP flap reconstruction. She quite quickly said that she didn’t think it would be feasible to do a double reconstruction in this way as I didn’t have enough fat in my tummy to get a satisfying result for both breasts. Despite eating my body weight in chocolate over Easter I still hadn’t gained enough wait! I mean, I guess that’s kind of a positive! Every cloud and all that….!

Thou shalt not weigh more than thy refrigerator…

This is the explanation on the letter to my surgeon:

“On examination, (she) has a BMI of 29.2 and wears a 36-38C bra. She has very nicely shaped breasts, with a nipple to notch distance of 24 cm. Her breasts are quite projected, and although she has good abdominal tissue for a DIEP, I have explained that she would get a better cosmetic result if we were able to use the centre of her abdomen to reconstruct her left breast. If we were trying to do a bilateral reconstruction, she would probably not get the same shape and projection as she has now.”

Joking apart though, I did feel rather deflated initially but she did a lot to reassure me. We discussed my family history and the level of risk of the cancer returning in the right breast which was not high. Of course I still felt anxious about this but, on reflection, I thought about how my mum’s cancer hadn’t returned in either breast (she had not had a mastectomy) but it came back as secondary bone cancer. It was still classed as breast cancer as it was a direct result of the primary cancer and ‘breast cancer’ was recorded as the cause of death on her death certificate. That can be quite confusing. I also have the benefit of hindsight because my mum was badly let down by her GP and her secondary diagnosis took 12 months, significantly affecting her prognosis. I would have the opportunity to be extra vigilant having learned from my poor mum’s experience who might otherwise have had a better chance of survival if she had not been constantly dismissed by doctors telling her the aches and pains were simply a part of the ageing process.

I stated that I had one question about this decision and the plastic surgeon said she had an idea of what I was going to ask. My question was that if you can only have one DIEP procedure would that mean I would not be able to have a natural/organic reconstruction of the right breast if the cancer did return in the future. She had preempted this question and explained that there are other alternative autologous procedures. A transverse myocutaneous gracilis flap (TMG) or transverse upper gracilis flap (TUG flap) uses skin, fat, and usually muscle from the thigh. She subsequently examined my thighs and confirmed that they would be suitable. In other words, I might not have enough tummy fat to make two breasts but my Beyoncé thighs would be more than sufficient should I need them for the other one! I can’t help feeling that my ‘strong’ thighs are responsible for my BMI figure putting me in the ‘overweight’ bracket! Anyway, what’s a thigh gap? Asking for a friend….!

This information was also all well documented in her letter:

“We briefly discussed implants, which she is not keen on. She is content to proceed with unilateral mastectomy and reconstruction, and I think this is a very sensible decision given that it would give her a better cosmetic outcome, and also reduce the number of surgical sites which need to heal before her chemotherapy. I have also reassured her that should she have any problems in the right side in future, she has also got adequate tissue on her thigh for autologous reconstruction.

I have also discussed the basics of DIEP reconstruction surgery with her today (using tissue from the abdomen)…..

I have explained the risks of surgery as per our checklist including a <1% chance of losing the reconstruction. Other complications include bleeding, infection, delayed wound healing, seroma (collection of clear fluid), abdominal weakness or hernia, asymmetry of size/shape compared to the other breast and the need for further surgery….”

Just a few risks then! I wholly agree that you have to be given this information and be prepared for complications. Equally though I focused on the positives rather than stress myself out about things that might never happen.

Take risks. If you win you will be happy; if you lose you will be wise.

I signed the consent forms there and then which meant that as soon as they could give me a date for surgery I would be ready to proceed.

The consultant also shared some photographs with me of similar results to what I could expect which I found reassuring.

The other thing we discussed at that appointment was whether I would be happy to be added to the UK National Flap Registry (UKNFR). Participation in this type of clinical audit helps to gather information about individual surgeries by following up on a large number of patients after treatment. Before any research is conducted on your data all personal information is made anonymous or coded so that researchers cannot identify you and patient data will never be given or sold to any other person or organisation (Data Protection Act 1998). I am all for helping with research and could only see this as a good thing to do. As a leading specialist centre for reconstructive surgery and rehabilitation Queen Victoria Hospital has a proud heritage and is known throughout the world for pioneering new and innovative techniques and treatments. They are able to offer excellent educational opportunities in clinical areas and in the classroom. The way I see it, without this research, I might not have had the choices I had been given to make my situation less intolerable.

The next part of the process was to take some blood. This has always been problematic for me and has been made more so by the fact that this could no longer be done using my left arm due to the sentinel node biopsy I’d had a few weeks earlier. After attempts by three medical practitioners, including one of the doctors, and a lot of apologies, it was decided to take the blood from my hand and insert a cannula at the same time.

I had been booked in to have a CT scan that afternoon but there was a bit of time to wait so I was given a form to take to the photographic department. Clinical photographs are taken at the consultant’s request and the purpose of them is to help doctors and other health professionals monitor various clinical conditions. They are also used as part of the planning process or for educational purposes and publication if the right consent is received. The images are kept securely within your medical records.

The photographer was very sensitive and respectful. I had to undress just my top half and roll down my bottoms slightly to show my tummy. She took a handful of shots from different angles and it was all finished in just a few minutes. All very painless and my dignity remained intact.

The next and final procedure of the day was a CT scan. “A CT angiogram (CTA) is a special type of CT scan that evaluates the blood flow in the abdomen to determine if the required blood vessels are intact and able to be used for DIEP flap reconstruction. It can also provide a “road map” for the surgeon and help locate the larger blood vessels (perforators). Surgeon preferences are mixed when it comes to CT angiograms. Some surgeons obtain a CTA on their patients routinely before DIEP flap surgery as they feel it can significantly help with planning the procedure.”

A lot of care is taken to follow safety procedures as the test exposes patients to radiation. I had to complete more forms and answer a lot of questions. One of the main questions is whether a patient thinks they could be pregnant. I categorically said no but at the last minute a nurse came in to double-check as she was concerned that my last period had been four months earlier. I explained that I was 54 and peri-menopausal! She didn’t seem overly reassured by that but didn’t challenge me any further.

As I mentioned earlier, I had been pre-prepared with the cannula in the back of my hand. I was positioned on the table in the scanning room and an IV line was inserted, into which a contrast agent was injected. Contrast agents are commonly used to improve the visibility of blood vessels. I was advised that I may experience brief flushing or a metallic taste in my mouth. You may wonder what ‘brief flushing’ feels like. Well basically it’s the feeling that you’re wetting yourself but you’re not! It’s a very strange sensation! The IV line is kept in place until the end of the scan which I think lasted around 30-45 minutes. I’ll be honest, I can’t remember exactly.

That was it in terms of procedures and assessments for that appointment. We had already discussed dates with the consultant. My brother was due to get married on 26th June and it was yet another thing I feared I would miss out on. In the absence of my mum it was really important to me to be there for him and it would have impacted on everyone’s enjoyment of the day if we could not all be together as a family. Having said that, I had mixed feelings about being the one to delay my surgery. However, in the end it made no difference because first my breast consultant tested positive for Covid and was off work for a couple of weeks then subsequently she had to cover a colleague’s clinics due to long term sickness. It meant that technically the delay had not actually been wholly driven by me and the ultimate date for my operation was only a few days later than the first date they could offer me anyway. I reassured myself that the consultant would not knowingly put me at risk and would advise me if she felt we shouldn’t postpone.

I decided to do my best to enjoy the few weeks of respite ahead of me. Despite the pandemic rules being relaxed for a few months, I had not felt the benefit of the freedom being enjoyed by others due to either the fear of contracting Covid ahead of appointments/operations or having to convalesce afterwards. I wanted to make the most of this time to catch up on a bit of socialising and overdue fun in the hope that I could take my mind off my situation and get my life back for a short while. And that’s exactly what I did…..

“The human capacity for burden is like bamboo- far more flexible than you’d ever believe at first glance.” – Jodi Picoult (‘My Sister’s Keeper’).

Your setback is just a setup for your comeback

I found myself in a strange place for the next few months. In one way it was nice to have a break from medical procedures after two surgeries and two general anaesthetics in just two months. I saw it as a time for some ‘normality’ which wasn’t just from my personal situation but also in terms of the pandemic and the constantly changing rules and restrictions of the past two years. However, it was also ‘limbo’. I had no date for surgery and being able to plan anything with any certainty was still difficult.

Firstly, I was looking forward to celebrating my birthday as the previous two had both been during strict lockdown periods. My birthday was on a Tuesday during the Easter school holidays, as it often was being early April, and meant that I could celebrate during the day with more of my friends as many of us only work during term time. We booked a local restaurant for lunch.

On the Saturday before my birthday another group of my friends took me out for brunch at a beautiful farm cafe which overlooks the picturesque Tillingham Valley with views of the traditional hop gardens. It’s called ‘Tibbs Farm’ in a village called Udimore. I would highly recommend a visit! I’d had a bit of a dry throat but we all agreed to do lateral flow tests for Covid beforehand and everyone was clear, including me. The friend who picked us all up had kindly decorated the interior of her car with bunting and had bought some ‘bubbly’ with disposable champagne flutes! It was a lovely treat and one of the few times I’d been able to venture out, especially anywhere public, in the last three months.

My throat continued to feel not quite right but I didn’t have lots of other symptoms. I am so conscious of my friends’ different situations though, looking after vulnerable relatives or vulnerable themselves. So I kept testing (it was easy to stock up on test kits back then) and remained negative. Until…..the actual morning of my birthday! I couldn’t believe it! Positive for Covid! After everything I’d been through this year my birthday was going to be another hugely disappointing one. My family made a big fuss of me though and I had a few doorstep visitors who I saw from a safe distance but, at one point, I got very upset when a close friend called. I don’t expect it was just about that day, more like a build up of emotions from the frustration of weeks of being unable to do nice things for fear of Covid delaying any of my treatments.

I picked myself up, as I usually do, and when I was feeling more rational I was able to see it really wasn’t the end of the world and planned celebrations could be postponed. We had a holiday to look forward to which we had waited two years for, rebooked twice due to the pandemic. It was originally arranged for Easter 2020 for a visit from my sister-in-law who lives in New Zealand. The last time she was in the UK was 2017 to celebrate her 50th birthday with my husband, her twin brother. It would have been three years since we had seen her and was a chance for the whole family – including their older brother and his family – to spend some quality time together. We rebooked for 2021 but sadly Covid restrictions continued due to an upsurge in infection numbers. Even if our holiday could have gone ahead at that time, NZ had one of the most rigid sets of rules in the world and were not letting anyone in to the country during that period, even people who had been away and wanted to return home. So there was no chance of my sister-in-law joining us then. Where she lives on a dairy farm close to Gisborne they are very sheltered and at low risk so she quite rightly said why would she expose herself to the virus by travelling on a long flight to a country that had one of the highest Covid death rates at that time? Not only that, it would be pretty miserable not being able to go out anywhere during her visit. She is a hardworking farmer and struggles to sit around indoors not doing anything as it is. It’s already quite difficult for her to slow down for a few weeks and enjoy a rest but being locked down in the way that we were in the UK would have made her stir crazy! Although the situation had improved vastly with the rollout of the Covid vaccinations by the beginning of 2022, we didn’t have absolute guarantees that our holiday would go ahead in April so she didn’t book any flights.

I also missed out on my best friend’s 30th wedding anniversary party at her house. It was only a few days after my positive test so I wasn’t in the clear at that time. Another kick in the teeth, missing out on getting together with my friends yet again. I just had to keep reminding myself that worst things were happening to other people and it could only get better, couldn’t it?

I tested negative just in the nick of time, as did my husband who had also had Covid. So we could finally look forward to our holiday. As much as it is nice to go abroad, I loved the fact that we could just throw everything into the car and leave when we were ready, without the pressure and stress of packing to fly and rushing to an airport (it’s rare for us to turn up with time to spare!). We had arranged to meet the rest of the family, who live much closer to our destination, in Poole as we had to wait to be able to check in to our accommodation.

The journey was eventful, as it always seems to be with us! We stopped to get fuel and a lady came over to ask for help. She had a flat tyre and was in a bit of a panic. It was a very proud parent moment when our youngest son demonstrated his skills and changed the tyre for her. He is doing a motor mechanics course at college and did it like a pro! The lady was extremely grateful.

The next thing was a phone call from the Queen Victoria Hospital in East Grinstead. They were calling to get me booked in for my mastectomy. However, the lady asked if I had had Covid and, not even thinking that it would be a problem, casually said I’d just got over it. Unfortunately they cannot do surgery until a patient is at least seven weeks clear of having Covid. It was really disappointing but I can understand the caution, particularly knowing it was a long and complicated operation. It turned out that it didn’t make a huge difference to the original plan as they didn’t have availability for about six weeks anyway so it would only actually be put back by a couple of weeks. So she booked me in for late May. After I came off the phone, feeling a bit flat, I realised that it would mean I was going to miss a theatre show literally a couple of days after the surgery date and I was gutted. I’d missed out on so much, it felt like another punch in the gut. My husband suggested I ring the lady back and just see if it could be slightly later, for the sake of a few days. I managed to get hold of her and she was absolutely lovely about it. She agreed it seemed a shame to miss out and said she would try to get me in for early June but would obviously need to check that the surgeons were available. She did say though that she could still book me in for my appointment to meet the surgeon and be assessed so that was booked for Monday 29th April. I felt much happier after I’d spoken to her as, like I’ve said before, it helps me to have a plan of sorts.

We met up with the rest of our family at a Wetherspoons pub – all 15 of us – and basically rearranged the furniture so we could all sit together! It was lovely to see everyone as it had been a while. While everyone was chatting and catching up I had been talking to my niece and, for no apparent reason, I suddenly felt very overwhelmed and started to well up. I took myself off to the ‘Ladies’ in an attempt to compose myself as I didn’t want to spoil the happy holiday mood or draw attention to myself. However, my niece followed after me and, in turn, she was followed by my nine year old great-nephew who seemed a bit bemused. She reassured him everything was ok and asked him to go back to the table and I explained that there was nothing in particular wrong. I just had random moments of a build-up of emotions. I think it may have been a combination of seeing everyone, the holiday finally happening and processing the information that I’d had from the hospital. To my relief, no-one else seemed to have noticed that I was upset and I managed to return without looking too red-eyed and blotchy-faced!

The rest of the holiday was just perfect. We had some lovely weather, fun days out in beautiful Dorset, played family games and celebrated Easter with lots of chocolate! It was also my husband’s birthday on Easter Sunday which was our last day there so we got him a cake and balloons, made a big fuss of him and went for a lovely meal in the evening. It was a wonderful end to a lovely holiday.

Aside of all the fun we had, there was also a very special thing that made this a particularly memorable holiday. On the day we arrived, the ‘older’ adults and two little people had a wander round the campsite then stopped for a bite to eat in the restaurant. The ‘younger’ adults stayed in their caravan. Before anyone had finished eating their food I got a call from my daughter saying she wanted us to come back. I asked if it was urgent and she just said no but you need to come soon! She was being very cryptic and I didn’t know what to think. She’d said it wasn’t something bad but my head went into overdrive and I couldn’t help feeling a bit anxious. The others had heard my side of the conversation and were also curious. My daughter hadn’t said anything about not telling anyone and was only expecting me and my husband to turn up! Anyway, we headed back to the caravans and tentatively piled into their’s. They weren’t expecting all of us so it was all a bit awkward! Then my son announced that he was moving out. I was so confused! I didn’t get why this was such a big deal and couldn’t have waited. Then he called us into another area of the caravan and told us his girlfriend was pregnant! We certainly weren’t expecting that! It was really early but they had all been teasing her about not drinking alcohol and they ended up sharing their news! I can’t lie, it took some time to sink in but of course we were all delighted. We were also all sworn to secrecy until a safe time to announce their news to anyone else. That was an agonising wait….!

We managed to rearrange my birthday meal to the Saturday after we returned from holiday and it was lovely. I was completely over my Covid by then and it was a lovely catch-up with my close friends.

“No storm, not even the one in your life, can last forever. Better days are coming…”

Just a few days later I would be meeting my plastic surgeon to discuss my big operation.

Sometimes the best thing you can do is not think, not wonder, just imagine, not obsess, just breathe, and have faith that everything will work out for the best.

It’s Okay to not be Okay

On the afternoon of Wednesday 21st March 2022 I had my next clinic appointment with the breast consultant. The purpose of the appointment was to be given the results of the sentinel lymph node biopsy and also to discuss the next stage of my treatment.

I was relieved to have confirmation that the nodes were clear of cancer cells which gave me a level of reassurance that the cancer had been contained to my breast. The consultant also checked my wound and was satisfied that all was healing well.

We then discussed the next step and, rather disappointingly, my consultant seemed to have no memory at that time of my request to consider a double mastectomy. She claimed not to have received this information despite informing me on the hospital ward a couple of weeks earlier that she had received the email. I did have a moment of brief panic at this point but I can only imagine the amount of patients these consultants must see and I knew that she was also covering a colleague’s clinic due to long term sickness so it’s not surprising she hadn’t recalled this one detail. She was more than happy to discuss it anyway.

At first I thought she wasn’t going to support me as she gave me a lot of facts about this type of surgery. She said there are a lot of protocols around what might be considered a more drastic option because in the past some surgeons have been rather “Gung Ho” about performing double mastectomies that may have been deemed unnecessary by other specialists. Hospitals are monitored very closely for their numbers in terms of this type of surgery, although she added that the Conquest had never been highlighted as culpable in this respect as they do very few operations of this kind at the hospital. For this reason, the request could not come from her ‘as a surgeon’. However, she said that as I had expressed my concerns to my Macmillan nurse, she would be able to speak on my behalf at the multi-disciplinary team (MDT) meeting.

She then went on to discuss my individual situation and considered all the concerns I had. This of course included my family history and my own earlier issues – i.e. a lumpectomy aged 20 on the left side and total duct excision (microdochectomy) aged 40 on the right side. She did stress that the risk of the cancer returning in my other breast was not considered to be high. Whilst I acknowledged and understood this, my mum’s cancer had returned 15 years after her primary breast cancer so this was obviously something I couldn’t help worrying about. In addition to alleviating those fears, she also said that aesthetically it was likely to give me a good symmetrical result. I did feel, in the end, that she supported my reasons and was happy for the nurse to go ahead with the request.

It would now be down to the team as to whether they agreed with the decision. In the meantime, my consultant would send her referral to the Queen Victoria Hospital in East Grinstead, West Sussex, a hospital specialising in reconstructive surgery.

This was the start of another ‘limbo’ period, mainly due to a series of unexpected events which I will come to later on. In the meantime, I left the hospital with mixed feelings. On spreading the news that my lymph nodes were clear of cancer I received a lot of congratulations from pleased and relieved well-wishers. However, I found it really hard to ‘punch the air’ and this may be hard for some people to understand. It is also a bit unusual for me as I always try to be positive and remain optimistic. So I will tell you why I wasn’t jumping up and down for joy at this point. Of course it was very good news but I was in exactly the same position as I was before the surgery. Removing the nodes was only an extra precaution because they had actually already shown up clear on a previous scan. The good news is that my situation hadn’t got any worse which is obviously great but I still had the same daunting journey ahead of me as before. I felt guilty for not being more grateful but when you’re in a constant state of anxiety it’s difficult to overcome the overwhelming sense of fear and dread for what’s ahead. I think I had done well to remain strong but I also think I had a right to be a bit scared.

“Sometimes the strength within you is not a big fiery flame for all to see, it is just a tiny spark that whispers ever so softly “You got this. Keep going.”

I received a call from my Macmillan nurse just over a week later following their weekly meeting. She gave me the good news that the team had agreed to my request for a double mastectomy. I also received a copy of the referral to the Queen Victoria Hospital.

“Dear Plastic Surgeon colleague,

I would be grateful if this lady could receive an appointment for plastic surgery assessment for bilateral mastectomy and immediate DIEP flap reconstruction please.

Mrs Hammond has undergone initially a left wire-guided wide local excision of the left breast on 5th January 2022 for what was thought to be screen detected high-grade DCIS measuring 12 mm. However, on definitive histology, a larger area of 37 mm of intermediate and high-grade DCIS was confirmed with a 4 mm invasive component which is ER positive 7/8 and Her-2 receptor positive. There was no vascular invasion. The DCIS is also oestrogen receptor positive 8/8. Unfortunately due to the size of the DCIS, the lateral margin was involved and the inferior margin was also close at 0.5 mm and the medial margin was only 0.8 mm. The MDT therefore advised left completion mastectomy and sentinel node biopsy followed by anti-HER2 treatment and chemotherapy.

Mrs Hammond has been considering her reconstruction options and in the meantime has undergone left-sided sentinel node biopsy which has revealed 2 normal sentinel lymph nodes which is reassuring. She has decided to proceed with left mastectomy and immediate reconstruction using autologous flap reconstruction e.g. DIEP flaps, as she does not wish to have silicone implants.

However, she has also requested contralateral i.e. right-sided risk reducing mastectomy. We have gone through the contralateral mastectomy protocol and Mrs Hammond understands that the risk of contralateral carcinoma is low and that contralateral mastectomy will not affect prognosis of the original carcinoma. However, in view of her family history, although she has not undergone genetic testing, she would prefer to have bilateral mastectomy to alleviate anxiety. She is supported by the breast CNS team and ‘X’ the breast CNS who met Mrs Hammond in clinic today, will take this request to the breast MDT meeting this week to discuss it with the multidisciplinary team and to ratify that decision.

On the left side which is the side of the DCIS, we would advise nipple-excising mastectomy. However on the right side Mrs Hammond would be eligible for nipple-sparing mastectomy if deemed suitable by the plastic surgery team.”

Next step would be meeting the plastic surgeon which, as had been explained to me, may not be for a few weeks. I just managed to return to work for one week before the Easter holidays. It was a way of easing back gently after two surgeries and quite a considerable period of absence. A little bit of normality in what had been an otherwise incongruous and bewildering existence.

“I am a warrior. Not because I always win but because I will always fight”

There’s a reason fairies wear blue – It’s the colour of magic! It’s also the colour of the ocean and therefore my favourite colour….obviously!

Life had thrown me a curveball and it was very surreal. Sometimes it felt like an ‘out of body’ experience. I don’t think you can imagine what it really feels like until it actually happens to you. In my case, I launched myself into practical mode and life became a bit robotic. There were going to be a whole lot more appointments and convalescence periods which strangely can help with managing. In many ways, the control is completely out of your hands and each ‘event’ (assessments, surgeries, check-ups etc) provides a structure to the situation.

Up to and including this point I hadn’t actually questioned my mortality. Dying wasn’t an option and, as long as I believed that, I would be able to remain optimistic and focus on beating this unwelcome intrusion in an otherwise happy existence. It also helped to be thankful it was me and not one of my children. I would rather be going through this than watching any of them suffer.

“….I will not allow my life’s light to be determined by the darkness around me” – Sojourner Truth

I had a plan of sorts. First step was to have the sentinel lymph nodes removed. I had also contacted the specialist breast nurse to confirm my decision to go ahead with the mastectomy. However, with such a drastic change in the circumstances I started to flounder and the fear started to slowly creep in. In view of my mum’s history, along with the fact that I had already had some suspicious activity in my right breast, I began to think that maybe it would be better to have a double mastectomy. I decided to raise it with my husband to see what he thought and he completely understood my reasoning and didn’t think I was being irrational. Up to this point I hadn’t mentioned these thoughts to anyone else but when I did run it past a few close friends they said they had all felt that they’d be tempted to do the same in my situation which reassured me that I wasn’t being overdramatic. I decided to talk it over with my Macmillan nurse. As always she listened attentively and understood my reasons. She said that long term anxiety is an equally important factor in considering my options and if I was always going to worry based on the information I had it should at least be discussed. She said she would email my consultant to let her know I was contemplating this and it would be discussed in the next clinic appointment.

Once again I had pre-op appointments to attend, including the standard assessments, as before, and a Covid test three days prior to admission after which time I would mostly be self isolating. I say mostly because I had to attend a hospital appointment during the isolation period, the day before my operation, which was a necessary procedure for the surgery.

Just to recap, my lymph nodes were checked by ultrasound in Brighton at my very first appointment in December 2021. This was to check whether they contained any cancer cells. If the lymph nodes look normal during the ultrasound scan, you don’t have a biopsy. However you would usually have a sentinel lymph node biopsy (SLNB) at the same time as your breast surgery to check if cancer cells have spread to the nearby lymph nodes. This wasn’t deemed necessary when I had my lumpectomy surgery as the diagnosis at that time was that the cancer wasn’t invasive. In my case we had agreed that the sentinel lymph node biopsy would take place ahead of my second breast surgery rather than wait, mainly because of the initial misdiagnosis and my anxiety around the regrading of my cancer. As I said previously it was also to alleviate some of the anxiety by feeling that something is happening during the period of waiting for surgery and would be one less invasive procedure to endure on top of an already long and complex operation.

The sentinel node is the first node that fluid drains to from the breast into the armpit. This means it’s the first lymph node the breast cancer could spread to.

On Tuesday 1st March 2022, the day before my surgery, I attended the Nuclear Medicine Department within the Radiology department at the hospital. While I was waiting to be called in I got chatting to another patient who was having the same procedure and also surgery the next day so we would very likely be seeing each other the next morning.

The Nuclear Medicine scan involved a small injection of a special radioactive liquid called a ‘tracer’ followed by a series of images taken using a special scanner. Built into the same machine is also a CT (Computed Tomography) scanner. Both produce still images of organs and body structures. Let’s just backtrack slightly to that ‘injection’. I had undergone a brutal biopsy followed by a lumpectomy and now they were going to stick a needle in my nipple! It still makes my eyes water thinking about that! Thankfully the pain of the needle going in was the worst bit but, yes, it stung like hell! The procedure took about 20 minutes and basically involved me lying very still on a special bench while the scanner did a series of acrobatics around me!

I then went home and back to self isolation for one more night. The instructions were the same as my previous surgery – nil by mouth from midnight. 300 ml of water at 6.00 am and arrival at the ward by 7.00 am. This time was straightaway quite different. The ward was much busier and I spotted the lady in the bed opposite mine who I’d seen the day before. There were also two other ladies who were in there for breast surgery, one also opposite and another in the bed next to me. They were all very chatty and I felt much more at ease this time. We joked about the fact that our first ‘task’ was to produce a urine sample for pregnancy testing! I suppose they have to make absolutely sure but it does always make me chuckle. This was followed by the usual assessments, changing into a gown, measured for compression stockings and provided with an identification band. I lost count of how many times I had to confirm my name and date of birth each time someone asked me questions, even if they had attended to me just minutes earlier or at other times that day!

Initially I was third on the list which didn’t seem too bad but that all changed when my breast consultant came to see me. After a brief chat she said it didn’t make sense for me to wait as others had to be taken to X-Ray first for their wire guided incision so they would not be going into theatre for a couple of hours. As I was only there for the sentinel lymph node biopsy I would just be waiting around for no reason. So she altered the list and said I’d be going down first. Result! She also said she had received the message from my Macmillan nurse about the options of a double mastectomy and we would discuss it in more detail at my next clinic appointment.

Things moved very fast after that. I was informed that the surgery would only take 20-30 minutes and I walked to theatre to be prepped. During the operation, the radioactive fluid is carried along the lymph vessels to the sentinel lymph node and the surgeon uses a special probe to remove the radioactive node as this is the node most likely to be the SLN (sentinel lymph node). They use a radioactive monitor to see which group of lymph nodes the tracer gets to first. The surgeon then removes between 1 to 3 nodes and they are sent to the laboratory to be looked at by a pathologist for any cancer cells. 

I was forewarned about the reaction of the dye which I was advised can stain your breast slightly blue. It can also turn your urine blue/green and can sometimes leave a blue tinge on your skin for about 24 hours. In the lead up to the op there were a lot of ‘Smurf’ and ‘Avatar’ related jokes!

To be honest, I thought it all seemed like a bit of an exaggeration and just expected a hint of blue. Well, I couldn’t have been more wrong! The stain was literally a bright turquoise colour and covered about a one-third area of my breast! It was so vivid and a bit freaky! It’s supposed to gradually fade over a few weeks or months but I still have a small area of blue skin now, over eight months later.

Despite a much shorter surgery than the one before my recovery wasn’t as straightforward. I was vaguely aware of a conversation going on around me when I was still in the recovery area of an unexplained rash across my chest. I also remember a nurse saying to me that I would be staying there for a bit longer so they could keep an eye on me. My blood pressure had also gone up a bit too high and they had given me an oxygen mask. They didn’t know if I’d had an allergic reaction to something but eventually the rash faded and they returned me to the ward but kept the oxygen mask in place until my oxygen saturation started to return to normal levels. I was more sleepy than previously too and dozed for quite a while before properly coming round. Thankfully I didn’t feel nauseous and felt ‘normal’ again in no time. After a cup of tea and something to eat I was well enough to go home.

While I waited to be discharged I swapped mobile numbers with the other three ladies and we now have a WhatsApp group to stay in touch. It really does help to be able to talk to other women who are on the same or similar journey to mine.

A nurse went through the discharge process with me and guess what? More leaflets! All of the leaflets are significant but these ones felt particularly important. One was a booklet about the exercises that it was imperative I did for the next few weeks, building up over time.

The main reason for the exercises is the risk of long term swelling (lymphoedema) in the hand and arm after surgery to remove lymph nodes from the armpit. This is swelling caused by lymph fluid that can’t drain away. It can happen any time after surgery and radiotherapy to your armpit. Not everyone will get this and it is less likely to happen if you only have a few nodes removed. However, there was an emphasis on how important it is to speak to your specialist nurse or surgeon if you think your arm or hand may be swollen. 

Unfortunately, once you have lymphoedema it can’t be cured but early treatment can help to control it. I was also informed that, from that point onwards, I could never have my blood pressure taken, any injections nor blood extracted from that arm. This would be the case for the rest of my life. I anticipated that this would be particularly disappointing to any nurses trying to extract blood from me as the choice would now be even more limited and it wasn’t great before! The reason for this is that the lymph nodes provide protection from unwanted infection in the bloodstream and sieve out anything bad. If the nodes aren’t there, the remaining nodes in that particular area have to work much harder than they normally would. This may not work 100% so the immune system will be slightly lowered making the patient slightly more at risk of infection but it usually tends to be an infection in the area of the node removal i.e. cellulitis. I was advised to be mindful of cuts on the hand, to wear gloves when gardening (they clearly don’t know me very well on that front!) and to generally take a bit more care.

The shoulder can also become stiff and painful after the surgery so the exercises would help with that too.

My youngest son came and picked me up about mid-afternoon as he was at college in Hastings and the timing matched with him finishing for the day. It was good to be back home nice and early and the kids were happy but they were a little perturbed by my colouring! The bluish tinge on my face freaked my daughter out! She later said she never wanted to see me looking like that again! As warned, my ‘wee’ was very blue and looked like I’d put a blue disinfectant down the toilet! This only lasted a couple of days and I was soon back to my normal colouring, apart from the stain on my breast which to this day is still hanging about!

When the breast specialist nurse called to see how I was just over a week later I asked her if I still needed to be wearing the surgical stockings. She checked if I was up and about and said because I was more mobile I could ditch them before the two weeks was up! I can’t tell you what a relief it was to hear that, they drove me mad!

In terms of the ‘cut’ from the operation I have about a four inch scar. It looked quite ‘angry’ in the first few weeks but has healed well now. It was more of a nuisance than the lumpectomy because it’s very difficult to keep your arms still all the time so you often end up rubbing your armpit area with any movements making it feel quite sore. I was very conscious when I had overdone it and had to be mindful of how much I did physically but it eventually calmed down.

It was all about taking one step at a time and that’s exactly what I tried to do. Of course I got anxious about what was ahead but I was also able to break it down by getting through one recovery period until the next stage of my journey. What else could I do really…?

“Being a warrior is not about the act of fighting, it’s about being so prepared to face a challenge and believing so strongly in a cause that you are fighting for that you refuse to quit”- Richard Machowicz.

‘No News’ is not Always ‘Good’ News

The physical recovery from my lumpectomy was good. I healed well and, apart from a few niggles, I had hardly any pain. However, my anxiety waiting for results was off the scale. It was a much longer wait than I had anticipated and I spoke to my Macmillan nurse regularly. I kept thinking “no news is good news” but also why was it taking so long?

Finally an appointment with the consultant came through and I was due to see her on Tuesday 15th February 2022 at 10.00 am, almost six weeks after my surgery.

The evening before, I went with my husband to see ‘Chicago’ at the Congress Theatre in Eastbourne. It was Valentine’s Day and we’d booked it months in advance. I’d seen it twice but he’d never seen it. He loves jazz and we both love a bit of Fosse so I knew he’d love it. Anyway, what’s not to like for him about lots of beautiful women dancing in sexy outfits….?! As I’d hoped, he thought it was fantastic. It was a good distraction for my shattered nerves but predictably I didn’t sleep well that night.

My husband is renowned for his terrible timekeeping and I like to be punctual or, even better, early for everything so I knew it wouldn’t help my stress levels if we had to do our usual rush and ‘white knuckle’ ride to get to my appointment. He is very literal about the time it takes to get anywhere and never allows for potential traffic issues and delays. The route to the Conquest Hospital is often very busy, whatever the time of day, and my anxiety was at full stretch so he needed to be fully respectful of that. To be fair, with a bit of nagging from me, he wasn’t too bad and we actually arrived with some time to spare. There’s a car park opposite the hospital which is much cheaper and offers a discount on coffees if you buy a parking ticket so we spent a few minutes sitting with a coffee but I was very agitated and wanted to get checked in so we didn’t stay long.

My niece works in the same outpatients clinic as my consultant and was working that day. She came over to speak to us before we were called in which turned out to be quite a while after my appointment time. These clinics do tend to run late. I guess patients just can’t be rushed in these circumstances. Ironically I was unknowingly about to be one of those very patients.

I was finally called in and my worst fears were realised. The news wasn’t good. The results confirmed that the cancer was at a more advanced stage than first thought – from pre-stage (early) cancer to stage 2. They had found HER2-positive cancer cells.

“HER2-positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2 (HER2). This protein promotes the growth of cancer cells.

In about 1 of every 5 breast cancers, the cancer cells have extra copies of the gene that makes the HER2 protein. HER2-positive breast cancers tend to be more aggressive than other types of breast cancer.”

HER2 testing is not done routinely for ductal carcinoma in situ, except as part of a clinical trial, so I’m very grateful to have had a consultant who wasn’t satisfied with the original diagnosis and questioned the potential for some unidentified cancer cells and her decision to take a wider margin. If she had accepted the findings of the Brighton clinic and only been concerned with the area of cells which were initially identified as DCIS, it is unlikely that they would have found the HER2 cells which were found directly behind my nipple.

This information was a complete game-changer and meant that, far from being over, my journey was really only just beginning. It doesn’t matter how much you prepare yourself for either scenario, it’s still a massive shock.

There was a lot to take in but I had to face it. No question. The consultant talked to us about all the options. She said she could do another lumpectomy and hopefully remove all the bad cells but it was wide spread and there were no guarantees. She felt the best option was a mastectomy but it would be my decision. A mastectomy is very daunting and a huge thing to face but I felt that I had a better chance both medically and cosmetically. My mum had partial removal and it definitely affected her confidence about the clothes she wore. She had probably lost about one third of her breast and never considered using prosthetics or undergoing reconstruction. Obviously this is about life or death, not vanity, but I was lucky enough to have options. I knew that if I didn’t opt for a mastectomy I would always be worried.

We discussed the different types of reconstruction and from the start I said I would rather not have implants. The consultant talked to me about natural reconstruction as an alternative. This is called DIEP (Deep inferior epigastric artery perforator) Flap Breast Reconstruction and is one of the most common breast reconstruction procedures done after a mastectomy. The consultant didn’t attempt to persuade me either way but she gave me some facts to consider. First of all, if successful, implants only last around ten years so you have to undergo further surgery in the future to replace them. They also carry more risk of complications, such as infections or leakage. If that does happen it can sometimes result in reconstruction no longer being an option. She also said that the organic way is more natural and aesthetically pleasing, particularly if it is only one breast being removed as it is easier to get the symmetry with the remaining breast and it can be tweaked if there happens to be any noticeable differences between the two. For me personally, I preferred the idea of using my own fat and tissue (autologous) rather than a foreign object. It is a personal choice though and that’s not to say I don’t respect other people’s decisions on that.

The natural reconstruction also comes with risks and is very invasive so it’s not the easier option by any means.

In a DIEP flap, fat, skin, and blood vessels are cut from the wall of the lower belly and moved up to your chest to rebuild your breast. With a DIEP flap no muscle is used to rebuild the breast so most women recover more quickly and have a lower risk of losing abdominal muscle strength with this type of procedure.

Although I decided very quickly the route I wanted to take the consultant was still keen for me to go away and think about it first. As I wasn’t sure what the timescales would be I tentatively mentioned a family holiday we had booked for Easter 2022. It had been postponed twice due to Covid and we were all really looking forward to it. I stated that I knew it wasn’t the most important thing in the circumstances but she replied that, on the contrary, she believed it was very important for me to have the holiday and, in any case, she didn’t think the surgery was likely to happen before then. If I opted to have the DIEP reconstruction it would have to be done at the Queen Victoria Hospital in East Grinstead, a specialist NHS hospital providing life-changing reconstructive surgery, burns care and rehabilitation services for people who have been damaged or disfigured through accidents or disease. The surgery would be undertaken by both the breast surgeon and a plastic surgeon and would take most of the day so both diaries and theatre availability would have to be coordinated.

She added though that she thought, with the new information that they now had, it would be sensible to remove a couple of my sentinel lymph nodes from my armpit on the left side, just to be absolutely sure that they were clear. Knowing that it helps me to have something going on and not just a long anxious wait she suggested that I could have the lymph node biopsy in the meantime. It would also mean one less thing to have done when I had the mastectomy. I agreed that this would definitely help me so we sorted out a date and she booked me in for Wednesday 2nd March 2022.

Directly after the appointment we were taken into a different room to chat with one of the breast care nurses to go through what we’d been told and to check we understood everything or whether we had any questions. By this time I was crying a lot and found it hard to talk. It was all so overwhelming. I did manage to ask some questions about the chemotherapy, like how many rounds she thought it would be and whether I would lose my hair. Unfortunately she said that all chemotherapy for breast cancer results in total hair loss. I didn’t know that. Again she advised us to go away and consider the options for surgery and to contact her once we were confident with the choice. Then she gave me more leaflets….

As well as the surgery, the consultant told me about a particular drug called ‘Herceptin’ which is the brand name of a medicine called trastuzumab. Herceptin can help control the growth of cancer cells that contain high amounts of HER2 and works by blocking the effects of HER2 and encouraging the immune system to attack and kill the cancer cells. Herceptin can be used to treat early-stage HER2 positive breast cancer, following surgery, to reduce the risk of the cancer coming back. She added that it is usually administered alongside chemotherapy initially then once the chemotherapy is finished, by injection every three weeks for twelve months.

During the same appointment we discussed family history and it was interesting to hear that HER2 was only discovered in 2006 and the targeted drug developed specifically to treat it. This would mean that my mum whose primary breast cancer diagnosis was in 1993 would not have been tested for this. She may or may not have had the same strain of breast cancer. I do know from attending appointments with my mum following her secondary diagnosis that her primary diagnosis was an oestrogen receptor positive cancer. I doubt we’ll ever know whether the cancer was HER2.

Directly after the appointment we were taken into a different room to chat with one of the breast care nurses to go through what we’d been told and to check we understood everything or whether we had any questions. By this time I was crying a lot and found it hard to talk. It was all so overwhelming. I did manage to ask some questions about the chemotherapy, like how many rounds she thought it would be, how often and whether I would lose my hair. Unfortunately she said that all chemotherapy for breast cancer resulted in some thinning of the hair but, more often, total hair loss. I didn’t know that. Again she advised us to go away and consider the options for surgery and to contact her once we were confident with the choice. Then she gave me more leaflets….

When we left, my niece was in the waiting area anxious to hear how I’d got on. She could instantly see that I’d been upset and commented on how long we’d been in there, almost two hours. I think she had also been expecting it to be straightforward and all sorted.

A letter was sent to my GP with a copy sent to me, summarising the consultation. I found it really helpful to have the exact details of the results so I could gain a better understanding of the diagnosis.

“Diagnosis: screen detected carcinoma of the left breast. Left wire- guided wide local excision 5th January 2022 together with lateral cavity shaving. Histology confirmed 37 mm of intermediate and high-grade ductal carcinoma in-situ together with an invasive component measuring 4 mm which has been graded as Grade 2 and is ER 7/8 and HER-2 positive. The DCIS component is ER positive 8/8. There is no vascular invasion. There was DCIS in the lateral shaving. DCIS lies 1.5 mm from the lateral margin, 0.5 mm from the inferior margin, 0.8 mm from the medial margin and 2 mm from the superior margin.

In view of the above histology we have discussed left completion mastectomy and sentinel node biopsy of the axilla to stage the axilla. Mrs Hammond does have a family history of breast carcinoma as her mother was diagnosed and treated at the age of 45 and died of bone metastases at the age of 64. She would therefore prefer left completion mastectomy and reconstruction rather than contemplating further margin excision.

We have outlined the different forms of immediate reconstruction. Mrs Hammond is not keen on implants and is considering autologous reconstruction and has taken away all the information leaflets from the breast care nurse to consider her options further and will return for further discussion to decide whether she would like to proceed in which case I will refer her to the plastic surgeons for consideration of a DIEP flap and skin-sparing mastectomy.

In the meantime we have discussed upfront sentinel node staging of the axilla prior to undergoing immediate reconstruction and I have gone through the risks and benefits and also the potential complications of axillary surgery and have booked a date on my list at the Conquest for left sentinel node biopsy using dual technique radiocolloid and blue dye injection on Wednesday 2nd March.”

When we left the hospital my husband said “I think you knew, didn’t you?” In all honesty, there was a bit of me that felt unsettled by the long wait for results. I just wish I’d been wrong….

However, the toughest part of my day wasn’t over yet. I had to break the news to my family and friends, knowing my daughter would take it particularly hard…

“You never know how strong you are, until being strong is your only choice” – Bob Marley

Caring is the Essence of Nursing

Recovery following my lumpectomy….

My life has always been madly busy so ‘taking it easy’ was always going to be a challenge. I would describe myself as an ‘impatient patient’! It’s even more difficult when you are asymptomatic and, as far as I was aware, in good health so my recovery was all about the post-surgery healing. I heeded the advice to take regular pain relief and physically I managed well. Mentally, definitely a bigger challenge.

I had to endure the biggest test of strength, courage, hope, faith, belief, resilience and vulnerability. If my patience was tested in relation to my physical recovery, it was nothing compared to the agonising wait for results.

I was instructed to wear the surgical stockings for two weeks, only removing them to take a shower.

“Compression stockings are worn during and for a period after surgery to reduce the risk of blood clots forming in the veins of the legs. This risk of clot formation is increased after surgeries that involve cancer, repair of trauma or organs in the pelvis or lower abdomen. The stockings are also used during other types of surgery of an extended length arbitrarily three or four hours.

A normal individual lying in bed (whether awake or sleeping) periodically moves their legs. The action of the muscles in the legs squeezes and relaxes the veins promoting regular blood flow. When the person is less active, as when under the influence of anaesthesia or sedation, then the blood will tend to stagnate or pool. Under the special circumstances noted above, there is an increased risk of clot formation. These situations together with the decreased venous blood flow due to decreased action of the muscles places the patient at a greater risk for forming blood clots.

The formation of a blood clot itself is not as important as a possible subsequent event. In that event, a portion of the blood clot dislodges and passes through the bloodstream into the blood vessels of the lung. This event is known as a pulmonary embolus.”

They are therefore a necessary evil but extremely annoying!

Thankfully it was winter so I wore jogging bottoms most of the time, hiding the unattractive teal green stockings! As I’m sure you can imagine they become very itchy. They also have a hole on the sole of each one and after a while they lose their shape and you end up with your toes poking through and have to keep adjusting them. Apparently the holes are there to check the stockings are not too tight, and going to create a problem. Once the stocking is in place, the hole can be used to find the big toe. I have no idea if that’s true!

I also had to wear a bra 24 hours a day for the same length of time. I had purchased some post-surgery non-wired bras which made it more bearable. However, I did send my husband shopping one evening as I had been advised that it would be okay to wear a ‘sleep bra’ at night. He went to M&S and got me a couple of crop top bras which gave me a bit of relief at night times.

Exactly two weeks after my operation I attended my appointment with a nurse at my GP surgery to have my dressings removed. The dressing was left untouched for the whole of the two weeks. I had been advised that if it started to peel off just to put an additional dressing over the top of the original one.

Now, no matter what your expectations are, it is nerve-wracking for the ‘reveal’, something you would expect to be handled with compassion and sensitivity. Well, as I soon found out, you don’t always get what you expect.

As I wasn’t yet back to driving myself, my friend took me to the doctors surgery. She waited in the car park as she was not allowed to accompany me. My appointment was 11.50 am. I signed in at the reception desk at 11.45 am and waited to be called in. I guessed they were running late as we went past my appointment time. I appreciate that appointments sometimes run over and I don’t have an issue with that so I just waited resignedly. I’m sure I have also been that patient taking up a bit more of my allocated time slot at some point.

Eventually, at around 12.05 pm, my name came up on the digital screen and I found my way to the correct consultation room. The first thing the officious looking nurse very sternly said to me was “Close the door please” followed by “You do know your appointment was at 11.50 am don’t you?” No ‘Good morning’ or ‘How are you?’. I replied very calmly that I had actually checked in five minutes before my scheduled appointment time to which she replied “Oh I don’t know what they are doing out there…” meaning the reception staff. No apology for accusing me of not being on time. At this point I was close to tears as my nerves were already in pieces before going in so I was feeling far too fragile to confront anyone, let alone someone who had ‘barked’ at me the second I entered the room.

If I thought it was going to get better after we’d cleared up that little misunderstanding I was very much mistaken. The nurse asked me to ‘sit’ on the couch and undress my top half. She didn’t ask if I’d be more comfortable lying down (I definitely would have been) or attempt to cover me up at all and I felt very vulnerable sitting upright, naked from the waist up. She then proceeded to remove the dressing without any conversation to put me at ease and the only comment she made was that the hospital advice is to leave the steri-strips in place to come off in their own time. Not once did I see her smile. I just got dressed again and left. I’m sure at any other time this nurse would not have bothered me quite so much but I was full of anxiety and the experience really knocked me sideways.

By the time I left the surgery I was in tears and did not have the confidence to speak to any other members of staff about it.  Whilst I totally appreciate the COVID safeguarding, having to leave via the back door would have meant going back in and speaking in front of people in the waiting room which put me off saying anything at the time.

I told a few friends and my family about this and they all said I should make an official complaint. I have been a patient at the surgery for over 32 years and have always been more than happy with the service I have received.  I have nothing but good things to say about my GP and the rest of the team have always been helpful and professional. However, this situation was not okay for me or anyone else so I felt a responsibility to raise it and hope that it would avoid another patient receiving such an unprofessional and insensitive attitude.

This is a section of the email I sent to the Practice Manager:

“This was a really unpleasant experience for me. I am understandably anxious about the diagnosis, particularly as I lost my own mum to breast cancer and her diagnosis was at a younger age than myself. I was anxious about whether I would be sore and, just as importantly, what I was going to see once the dressing had been removed. I was absolutely astounded at the lack of patient care or concern. I would expect more compassion from anyone regarding my situation and the trauma of a cancer diagnosis but to be treated so disrespectfully and imperviously from a medical practitioner was quite shocking. I had been very complimentary about the NHS throughout my journey thus far. Everyone was so gentle and kind prior to this incident and I can’t think of a justifiable excuse for this.

I am not someone who would normally complain but I hate to think of other people being treated in this way. In hindsight I did think “what if I was a few minutes late?” (even though I wasn’t). There may have been a very valid reason for this – a late bus, being slower to get ready following surgery, any number of reasons, and this could have prompted a conversation to check that I was coping and that everything was okay. Contrarily, I have had several phone calls from both the Macmillan nurse and the specialist breast nurse at the Conquest following my surgery, checking in with me regularly.”

I finished the email by saying that if I needed to book an appointment in the future, which I’m sure I would do at some point, I would not want to be seen again by that particular nurse.

I was subsequently contacted by the Practice Manager. She commented that it was out of character for that member of staff but she acknowledged that this did not make it acceptable. First of all, my friend who works at the same surgery had already told me that this was not the case and it was actually very much how this particular nurse often is. Secondly, I can honestly say, whatever mood I might be in when I’m working, I like to think I always maintain professionalism and respect for others.

Nevertheless I received an apology from the practice manager and she also made a note on my records for me to not be allocated to that nurse in the future so that I wouldn’t have to explain my reasons to anyone when booking. I imagined this big red flag popping up each time I call – WARNING: Don’t upset this patient!

It may just be my imagination but I genuinely feel that when I ring up for anything these days the receptionists are all super nice on the phone! I’m sure that’s nothing to do with my complaint though. I do believe the world has more nice people in it than not. You can’t tar everyone with the same brush eh?

It’s a shame that I was faced with such a horrible ordeal after being so kindly cared for up to that point.

“Being compassionate is to look beyond your own pain, to see the pain of others” – Yasmin Mogahed

There’s only one day at a time here, then it’s tonight and then tomorrow will be today again.

Wednesday 5th January 2022. The date of my lumpectomy.

Nil by mouth since midnight, very little sleep and a very early start! As instructed I had a shower that morning and was advised to drink 300 ml of clear fluids at 7.00 am.

Just as a reminder, this is the summary of my situation so far which was provided in a letter to my GP:

“Lisa is currently asymptomatic and was recalled on the screening programme with a 12 mm cluster of microcalcifications medially in the left breast at around the 3 o’clock position which was biopsied under stereotactic guidance and a marker coil was in put in place. The biopsy has confirmed High Grade DCIS (Ductal Carcinoma in Situ), ER 8/8 and PR 6/8.

There was also a separate cluster of calcifications measuring about 9 mm which was deep to the left nipple and the radiologists were unable to biopsy this as it was too superficial and on review they felt that these were unlikely to be of clinical significance and therefore felt that they could be left alone and not targeted. This has been discussed at the Screening unit’s MDT meeting in Brighton and also twice at the Conquest MDT meeting. We are therefore concentrating on treating the 12 mm area of medial calcifications. I have explained to Lisa about the assessment of margins on the surgical specimen and if further surgery is required it will be discussed in the follow-up post-operative clinic after appropriate MDT review.

For the present we have discussed right wire-guided wide local excision for the high-grade DCIS. This may be followed by breast radiotherapy and endocrine therapy.”

We arrived at Gardner Ward which is a 28-bedded surgical ward for male and female patients. The surgery covers abdominal, breast and general surgery and the unit also benefits from Enhanced Recovery After Surgery (ERAS), which aims to support early discharge of patients. Technically a day surgery unit. My arrival time was 7.30 am but my husband wasn’t allowed beyond the main ward doors so I went in alone.

There were a couple of other ladies admitted the same morning, both for breast surgery. We didn’t chat, I think we were all too nervous. The first thing I was asked to do on arrival was a urine specimen. It was to check I wasn’t pregnant! Now that would have been an added complication, in more ways than one! I was given a hospital gown to put on, measured for surgical stockings and given an identification tag. Then followed the usual preparations, a lot of questions, first from a nurse then later a visit from the anaesthetist. He seemed very young (I know, it’s actually that at I am now old!) and was very nice. We discussed my previous reactions to general anaesthetic, in particular the nausea and extreme drowsiness post-op. He reassured me that he would give me sufficient anti-sickness medication with the anaesthetic so hopefully I would have a much better experience this time.

Most of that day was a lot of waiting around. The older lady of the two others went down first for her surgery. I overheard her saying that this was her second mastectomy, the first being almost thirty years previously. It’s hard not to overhear the conversations on a quiet ward and the poor lady had previously had a hip replacement, a knee replacement and obviously breast cancer. What an absolute warrior. She gave me added inspiration for what was to come, both in the short term and potentially the longer term too.

At around 8.45 am I was taken down to the radiology department for the wire incision. I put on my long fleecy dressing gown and slippers and was collected by a porter with a wheelchair. I was then wheeled down to the department which is situated on the same level as the reception and coffee shop area. I can’t lie, I was rather mortified to be wheeled through such a public area in my gown and groovy stockings! It was also quite chilly so I was glad that my snuggly dressing gown wasn’t over the top! I was then left by the porter in a very stark area of the department, away from the general waiting room, for quite a long time. I wondered if I’d been forgotten but eventually I was taken in and was allowed to walk to the ultrasound room.

The process is to place a fine wire in the tumour to guide the surgeon to the lesion during the operation. This technique is called a Wire Guided Localisation. An ultrasound is performed and used as a guide to placing the wire. Although the placing of the fine wire takes seconds, the whole procedure takes about half an hour. The wire is coiled flat against the skin and secured firmly and a dressing placed over the top. By carefully tracing along the guide wire, the surgeon removes the wire and a piece of breast tissue. This can limit the surgical approach, and impact the cosmetic result.

The procedure was carried out by the same sonographer that I had met a few days earlier. He was equally gentle and explained that it is a very delicate and tricky procedure and they have to be very precise, hence the time it takes to get it exactly right, at the same time thanking me for my patience! Once the wire was inserted I had to have a mammogram to check they were satisfied with the placement of the wire. A lovely nurse performed the mammogram which was just through an interconnecting door while the sonographer looked at the images on a computer in the same room. Once satisfied it was all good, a porter was called to collect me. I was advised that I would have to be taken again by wheelchair back to the ward as they couldn’t risk anyone bumping into me and dislodging the wire. The wire was protruding from my breast with two v-shaped ends sticking up in the air around my neck area. I was advised to slightly restrict my movements while waiting for my operation. I think it’s important to say that this was not a painful experience, just a bit uncomfortable.

I then spent almost six hours just waiting. I sat in the chair rather than lie on the bed and just read my book and played games on my phone. I had a mask on and, at one point, I was coughing. The nurse asked if I was ok and I said that I was unbearably thirsty. She said I could try swilling some water but couldn’t swallow it! I didn’t risk it, I mean how hard would it be to not drink the water?! She did say though that I could remove my mask while I was just sitting in the bay. Shame I wasn’t told that hours earlier when I was sitting there with a mouth like one of Gandhi’s sandals!

I also kept forgetting about the wire and a couple of times I leaned down to retrieve something from my bag and panicked that I might have moved it! I spoke to a nurse and she said it would be fine and some people even have them inserted the day before surgery! Phew!

The Sister on the ward apologised to me for the long wait. She said if they’d known it was going to be so late she would have offered me some sips of water much earlier but it was too late now and she said they would be coming to collect me very soon.

Despite the theatre being just a few metres away on the other side of the corridor I had to be taken in a wheelchair again to protect the wire. The theatre staff were very kind and chatted to me while getting me prepared. The operation took about two hours and I was back on the ward by about 6.45 pm. I was so happy that I didn’t feel at all sick and not too groggy either. It didn’t take me long to be well enough to be discharged.

A specialist breast nurse spent some time with me explaining how important the post-surgery exercises were (more leaflets!) and gifted me a lovely heart-shaped cushion to help me get comfortable at night. She advised that I should wear my post-surgery bras and the surgical stockings for 23 hours a day for two weeks. She also gave me advice about showering.

I was given information about pain relief and also that I should make an appointment with my GP surgery for a nurse to remove my dressing. The dressing was fairly modest, basically a large plaster! The surgery was performed by cutting around the areola of my nipple so it was all very neat and aesthetically pleasing. It was the same as my right breast after I had the microdochetomy in 2008 and the scarring is very minimal, eventually just a faint white line that’s barely visible. However, initially I didn’t know what it was going to look like as it was covered up for two weeks.

Home by about 10.00 pm ready to start my recovery. For now anyway….

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear” – Nelson Mandela