Home sweet home. No better place. However, I felt quite overwhelmed to be honest. I never imagined I would feel like it but I felt ‘different’. I WAS different. I remember one of the nurses who brought me back from recovery squeezing my hand and telling me it was ok to feel sad and bereft and I didn’t have to be brave all the time. That made me cry. She described it as a grieving process. She was so lovely and held onto my hand until I was settled on the ward and it was time for her to leave. It’s very hard to explain the emotions as there are so many….relief, bewilderment, anxiety, loneliness, extreme tiredness, confusion, disorientation, none of which are at all surprising after such a large dose of anaesthetic.
It doesn’t matter how many times you get knocked down. All that matters is you get up one more time than you were knocked down.
Of course there were physical challenges at first. The best way to describe my tummy is that it was like being wrapped up really tightly with sellotape! I couldn’t straighten up for almost a week and had been advised not to force it. My breast caused me less pain initially, a bit sore and swollen but bearable. The worse pain was my back. You might think this a bit strange as my surgery had nothing to do with my back but I was warned at my pre-op appointment by the head anaesthetist that backache is the most common complaint after this type of surgery.
My husband had made the sofa up all comfy with a duvet to lie on, pillows and cushions. The heatwave was still intense and it was cooler downstairs. I ended up sleeping there for the first few nights as it was comfortable and made sense. I had bought one of those ‘cooling pillows’. The natural properties of the cooling gel keep you cool from the moment your face touches the pillow and slow heat absorption means that there are cool areas of the pillow available through the night. This was a game changer for me! You don’t have to cool them in advance but, as it was so unbearably hot during that time, I did cool mine in the fridge before using it.
I continued to take the paracetamol and ibuprofen regularly. However, my back pain reduced me to tears one day. After a few days of having help in the shower to wash my hair, I was confident enough to sit on a stool and do it myself. This was a painful process though. I wasn’t allowed to stretch my arms up too far and my back would be throbbing. I became desperate and ended up sobbing. In the end I contacted the ward at the hospital. They are available for a couple of weeks after surgery for any queries or concerns. The nurse I spoke to was very sympathetic and advised me to keep up with the Dihydrocodeine. I had started to take it less but was also low on supplies so I would need another prescription. She also said that I could start to straighten up a bit, taking it very gradually, as this would help ease the pain in my back. I also spoke to her about my breast as it was very hard to touch and I wanted to make sure this was normal. She advised me to massage the area regularly. I had been doing that but it felt like a rock and it was difficult to manipulate the area but I heeded her advice and continued to try anyway. My GP issued a prescription for the stronger painkillers too.
“Don’t let pain define you, let it refine you” – Tim Fargo (author of ‘Alphabet Success’).
The good thing about showering was the relief of not wearing the bra, control pants and compression stockings for that one solitary hour each day! I would lie on the bed for a few minutes while the dressings dried off and enjoy the freedom, just for a short while. On a few occasions during the six weeks of having to wear it all for 23 hours a day, I sat outside for about 20 minutes without the stockings and enjoyed some of the glorious sunshine. I was more mobile by this point so I didn’t think a few minutes would be too risky.
Ironically, the only underwear I wouldn’t have minded being stolen from my washing line was unlikely to ever be taken as, apart from the fact that it was far from sexy, I was always wearing it! Sorry, not sorry, but I couldn’t resist this….
A man was arrested the other day with more than 10,000 pairs of stolen underwear. Legal experts are expecting a brief trial…..(ref: a ‘dad’ joke!)
In terms of DVT (Deep Vein Thrombosis), I had the remaining 14 injections of Heparin to administer for the prevention of blood clots. I think the hardest part was remembering which side I did last (rather like when you’re breastfeeding!). I had said to a nurse before I left hospital that sometimes it was more painful than others and she said to make sure I inserted the needle at an angle or, better still, almost horizontally as that way I would be less likely to hit muscle. That was really good advice and from that point on it was definitely easier and less uncomfortable. It was a relief to do the last one though, not the nicest thing to have to do every evening.
Now for the ‘up close and personal bit’ – the result of my ‘new breast’. I don’t think any description can truly do it justice, it’s simply a work of art and incredible skill. Because most of the cancer was found to be behind my nipple it was decided early on that it should be removed. This is called a nipple-excising mastectomy. However, as I had a very tanned tummy at the time the surgeon used some of my skin to create a ‘nipple area’. It’s just a round circle, roughly the size of my nipple, without any of the other features. I call it my ‘chocolate button’! What I didn’t realise was that the access for the whole procedure was through my nipple. It was the same for my earlier lumpectomy but I just assumed it would be more invasive this time as they had to remove everything. I was expecting at least a scar on the underside of my breast. Incredibly they totally emptied my breast of its contents, including all the breast tissue which, if left, can leave a risk of the cancer returning, and replaced it with the fat from my stomach. Essentially I still have my breast with a few tweaks! I even still have the scar from my first lumpectomy in 1988 as it’s all my original skin apart from the grafted bit! I don’t have any evidence specifically of the skin being taken as it was part of the flap procedure (other than the dirty great scar across my abdomen!). The symmetry to my right breast is spot on and there is a very faint scar around the edge of the brown nipple area (areola). I am totally in awe of how sympathetically this surgery was carried out. It is so important for the majority of women that they still feel feminine and ‘whole’ and this is the perfect example of the amazing surgeons going the extra mile to ensure they get the very best result for the patient that they can in the circumstances. I will be forever grateful to them, not just life savers but people who truly care.
I can’t lie, my skin is a bit like a patchwork quilt these days with scars, old and new. They really don’t upset me though as they are a reminder, not just of what I’ve endured and been through, but that I survived and won the battle.
Never be afraid of a scar. It simply means you were stronger than whatever tried to hurt you.
After a few days at home I was up to having visitors and there were a lot! That really helped me through a time with so many restrictions and potential frustration and boredom! For anyone who was curious to see my reconstruction I invited them to have a look! The dressing on my breast was literally a square of microporous tape around the nipple area so the majority of my breast was visible. Everyone who felt brave enough to look was astonished at how brilliant it looked. It might seem odd to share such an intimate thing with my girlfriends (as my husband said a few times “Are you flashing your boob again?”!) but I truly believe it can help women to see that not everything about breast cancer has to be negative. I know I was unlucky to get cancer but I have definitely been lucky in many ways compared to some. Anyway, what’s a boob flash between friends eh?!
My tummy similarly had minimal dressing, just strips of tape right across. I couldn’t see what was underneath until my dressings were changed. I just knew it would be a big scar. 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 but no muscle is cut or removed. The blood vessels of the flap are reattached to blood vessels in your chest. Because no muscle is used, the recovery is usually quicker and there is a lower risk of losing abdominal muscle strength.
Despite the potential pain the nurses had emphasised the importance of doing the exercises I’d been given. It wasn’t quite so bad for me because I had had my lymph nodes removed four months earlier so I didn’t have to worry so much about the effects of that. However, it is still wise to do them following a mastectomy as they help to regain arm and shoulder movement. I had laid on the operating table with my arms out to the side for almost nine hours so inevitably my shoulders were a bit stiff.
In terms of my gradual steps to recovery I was given a table of what I could do and when. It was for a minimum of six weeks. Initially absolutely no lifting, stretching up high (I can safely say that was not difficult to obey with my sore tummy), driving and most household chores. For the first two weeks I wasn’t even allowed to lift a kettle and beyond that time only if it contained just enough water for one drink. I could drive after six weeks but only if I felt safe enough to be completely in control of the car in any eventuality.
When the going gets tough, put one foot in front of the other and just keep going. Don’t give up.
I didn’t find my first week of convalesce too bad as I was very tired and didn’t have the energy to push myself too much. My first check up was a week after my discharge and back at the hospital in East Grinstead. I was seen by a different plastic surgeon who just made sure everything looked ok and then I was seen by a nurse to have the dressings changed. It was all very straightforward and she said that I would be able to change them myself from then onwards. She advised me to go to the hospital pharmacy to buy a roll of microporous tape and recommended that I cut small strips and overlap then across my abdominal scar.
I had ordered some crop top style bras from Asda to collect in store so we went there on our way back from the hospital. Originally I was going to stay in the car while my husband picked them up but I changed my mind and decided it would do me good to walk a few steps, albeit slightly bent over. There is a point to this story! First though, you have to be able to picture how I looked on that day. My daughter had French-plaited my hair in two sections to make it more manageable and I was wearing a summer dress which is a ‘prairie’ style – gingham check, puffed sleeves, ruched bodice, maxi length. Nothing too strange about that. However, added to the look were my dark blue/green compression stockings and a pair of trainers. It suddenly occurred to me that I looked like I belonged to the ‘Bruderhof’ community, a socialist Christian movement who live in Robertsbridge, just a few miles from where we lived! Anyone could be forgiven for mistaking me for a member of the commune! All I needed was a headscarf or bandana and I could have fooled anyone, as I shuffled around the supermarket bent over and holding on to my husband’s arm! I bumped into a lady I haven’t seen for a very long time and she said “You look well!” I couldn’t really blame her as I did have a good tan! I just didn’t feel like telling her about my cancer and she didn’t seemed to have noticed that I was in ‘fancy dress’ so I just left it at that! It was good to know that outwardly I looked better than I felt and not washed out and pallid.
“Keep your face to the sunshine and you cannot see a shadow.” – Helen Keller.
I am still amazed at how straightforward my recovery from the surgery was. The pain was manageable so long as I took the analgesics regularly and I gradually worked towards doing more physical activity. I was very tired for at least a couple of months and recognised when I needed to rest or just do less. One of the biggest challenges for me personally was wearing the annoying support wear in what were at times blistering temperatures so it was a massive relief when I was able to ditch the stockings for good!
In terms of any loss of sensation I was told that you can either lose all feeling, some feeling or none at all. I fall into the ‘some’ feeling category and this can vary throughout the day! For example, at night my breast is often very hard and can be uncomfortable. My tummy is also a mixture and if I get an itch and I need to scratch I often can’t actually feel anything so the itch doesn’t go away immediately! This is also the case at the top of my left arm where my lymph nodes were removed. It’s a strange feeling but I guess I will just get used to it and it will just be my new ‘normal’.
“After the rain, the sun will reappear. There is life. After the pain, the joy will still be here.”- Walt Disney
Hoping for a Happy Ever After 