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.
Hoping for a Happy Ever After 