After the shock of my breast cancer diagnosis the next step was surgery. I was told to expect chemotherapy and radiotherapy afterwards, but that I should concentrate on one step at a time rather than planning too far ahead. The operation would consist of a lumpectomy and axillary clearance which in layman’s terms means they would cut out the lump from my breast and remove up to ten lymph nodes from my armpit. Ouch!
My breast cancer surgery
My breast cancer surgery took place at the end of July so I embarked on another manic series of adventures beforehand. Determined to make the most of having full use of my arms I tried paddleboarding for the first time, on Chichester canal, with a group of girlfriends on a glorious summer’s day. You can read about it here but we had great fun and nobody managed to fall in! I tried an escape room too with my sons, and had an amazing day in London with my sister looking at street art in Shoreditch. Oh, and I popped over to Southampton for a scooter rally day trip! I was trying to cram months and months of fun into just a couple of weeks, and it was exhausting, but really enjoyable.
Anyway, back to the cancer… My surgery was undertaken as a day procedure so I had to report first thing in the morning and was discharged just after lunch. My surgeon was happy with her work and said it had gone really well. I wasn’t the best patient though and didn’t really rest much over the next few days. I can’t seem to entertain the idea of a day of doing absolutely nothing, which is really annoying sometimes! I also had a holiday in Cornwall planned, and went there with my Mum and sister, which was nice as they are both nurses. My wounds were sore, but the worst part was removing the dressing after a week. I was lucky that it was a waterproof, clear ‘plaster’ so I could at least shower as normal, but peeling it off was really painful and I cried. The skin on our armpits and breasts is REALLY sensitive! The scars seemed to have healed well though, which was reassuring. Having dissolvable stitches makes life so much easier!
What on earth are lymph nodes?
Lymph nodes are all over our body and we generally have no idea what they are for unless they go wrong. Basically they drain away impurities and bad cells from all parts of our bodies, and support our immune system. As such, if you have any removed then you are more prone to infection so surgeons try and preserve as many as possible during an operation.
When you have lymph nodes removed the fluid in your arms has nowhere to go, so you either have a drain fitted (literally a tube coming out of your wound) but my surgeon said it was less of an infection risk just to let the fluid build up. This build-up is called a seroma and it would eventually drain away but could take up to six weeks. My Macmillan nurse said the seroma can vary between the size of a golf ball and a grapefruit. A grapefruit in my armpit? Bloody hell! Luckily mine was more the size of a small ring doughnut, and was quite uncomfortable and mildly painful. I couldn’t hold my arm next to my body, like you do when you’re standing normally. I had to hold it out slightly which was tiring and sore. My sister made a sling out of a scarf which really helped, as it was supported then, although the Macmillan nurse advised that I shouldn’t keep it in the sling for too long as I needed to keep the arm moving.
I had exercises to do as well, to help my arm and shoulder recover their movement, and they were painful to start with but really important as I didn’t want my joints to seize up.
There were a few bad aspects to the operation. Firstly, I could only wear non-wired bras so had to buy two or three comfy ones which wouldn’t dig in anywhere. I can’t actually wear an underwire for 12-18 months, which hasn’t actually been as bad as I thought it would be. Secondly, I had to wear a bra 24/7. This wasn’t great as it’s so uncomfortable to wear a bra in bed, especially when you’re feeling tender from surgery. Added to that, I couldn’t wear deoderant on my bad side so had to wash my new bras every day due to my stinky pit! Oh, and I wasn’t supposed to drive. Hmmm, we won’t dwell on that one…
It’s time for me to nag again! Please check yourself regularly. A friend of mine recently found a significant lump and I went to the breast clinic with her. We were both really worried but it turned out to be a harmless cyst and the doctor drained it there and then. It was such a relief but it shows that not all lumps are bad, and you mustn’t be scared to get them checked out. Early diagnosis is vital so please see your GP if you are worried about anything.
I went back to work after the break in Cornwall having had a couple of weeks off in total, and was almost back to normal by then, albeit with the painful seroma and restricted movement in my left arm. It didn’t affect my life really, just if I needed to reach up high for something as I couldn’t stretch too far. I’m incredibly lucky that my boss has been very understanding and flexible throughout this period. I’m a freelancer so don’t get sick pay, but actually I quite like that as I don’t feel guilty if I take time off for an ‘adventure day’ with my friends and family, or a hospital appointment.
In mid August I had a follow-up appointment with my surgeon to find out the results of the tests they’d done on the lump and lymph nodes. I was expecting this appointment to be just a box-ticking exercise so wasn’t prepared for any bad news. Unfortunately though, it turned out that they hadn’t got all of the cancer from my breast. They also found that I had HER2 receptors as well as oestrogen and progesterone receptors, which means that I’d need extra treatment and it was faster growing than they initially thought. It was grade 3, as opposed to the grade 2 that they originally thought (there are only 3 grades, which describe how fast the cancer grows). This meant that I would also need a mastectomy, so that they could be certain of removing all the cancer from that breast. The other not-so-great news was that of the seven lymph nodes which were removed, five had cancer in them.
The lymph nodes are where the pesky cancer cells could escape from my breast, so there was a concern that they could have travelled elsewhere in my body. To find out, they needed to scan me and then I would need to wait a couple of weeks for the results. This scared the hell out of me. I’m not a cancer expert but I knew that secondary cancer (where cancer has spread from its original place) is very, very serious. I broke down and spent the rest of the weekend in a daze, facing the prospect that my life could be shortened massively. I said in my last blog that I don’t Google cancer-related stuff, but I did briefly look at secondary breast cancer and a) it’s not curable and b) only 22% of people with secondary breast cancer live for 5 years. And yet throughout all of this I felt normal, fit and healthy! Apart from some discomfort from the operation I was a healthy person, seemingly. It seemed crazy that I could be dying.
I had some horrible conversations with my husband, planning the practicalities like how he would cope financially without me. Despite having completely inadequate pension savings and no critical illness cover, the one thing I’ve got nailed is life insurance so he and my sons would be OK for money. I know money is generally unimportant but I would hate to leave my family having to sell our house or worry about working on top of coping with the most awful grief imaginable. Having no critical illness cover was something I had done ‘mindfully’ as I work in financial services and understand what these products are. I was basically taking a gamble on my good health, but the gamble didn’t pay off. Even if I’d had a relatively low sum insured of £25,000, that would have made a massive difference in taking the pressure off while I was undergoing treatment. I planned my funeral in my head, and spent a lot of my commutes to and from work in tears, thinking of the worst scenarios.
Anyway, back to the scans… I booked CT and nuclear bone scans for the following week. It was actually quite a nice day out with my Mum! We took a packed lunch and settled down with magazines and cups of tea and water. I was injected with some radioactive stuff and another dye and had to wait a while before going back to lie in a couple of very expensive machines which would determine my future. That was the easy part. The hard part, the most horrible two weeks of my life, was waiting for the results.
I didn’t spend the WHOLE time crying and panicking, but I did spend quite a lot of it doing just that. Being at work was good as it helped take my mind off it for a few hours, and I talked to a lot of my friends and family who were great at hugging me and putting up with my general mental-ness. I didn’t sleep much at all either, even less than usual. I wanted to have a fun night before the results, because if they went badly then I wouldn’t feel much like going out. My DJ husband, Steve, organised one of our music nights, just to listen to all my favourite records with lots of friends around me. Many of them didn’t know the significance, but I needed to do it before the results, to have a rare drink and let my hair down whilst I still could.
Life suddenly became very clear, very focused. We all just get through each day, don’t we? Working, stressing, rushing around, not looking at life through a clear lens. Suddenly my focus was crystal clear. When I hugged people it meant SO much. I snuggled into my sleeping 10-year-old on my way to bed, just smelling him. Being with my friends and family meant the world to me. We all take so much for granted don’t we? I could live another 30 years in that frantic state, but if I had bad news then I knew that I would cram as much of the good stuff in, spending time with the people who are important to me, doing things I want to do, not wasting a second.
I didn’t dare dream about a positive result as I felt like it was tempting fate. The day dawned and I went back up to the hospital with my husband and the lovely friend who’d been at all the appointments with me. As we were waiting in the queue to check in at reception, my surgeon breezed past. She recognised us and gave me a smile, but I assumed she wouldn’t know the results yet as I’m sure she has better things to do of an evening than revise what all her patients are up to. We then had a nailbiting fifteen minutes waiting to be called in. Just writing about it now is bringing that horrible feeling back… The nurse called my name and led me into the consulting room. I was trying to read her face, and the face of the Macmillan nurse next to her, but they both had neutral expressions. I was honestly fearing the worst.
We sat down and I although I can’t remember her exact words my surgeon smiled and said it was good news, there was no sign of cancer elsewhere in my body. Oh my goodness, I burst into tears! It was the most unbelievable rush of emotions unlike anything I’d felt before. The only thing that I can compare it to is that feeling when your team grabs a last minute winner, for example when David Norris scored an equaliser for Pompey against Southampton; I was in the away end with my sister and older son and we just screamed our heads off, jumping up and down like complete loons, hugging strangers. Wow! Suddenly, having primary breast cancer, needing to have chemo, radiotherapy, various hormone treatments and a mastectomy seemed like the best news ever! It’s crazy how your goalposts change…
I hadn’t even thought about how we would celebrate as I didn’t allow myself to make any plans for after that appointment. I texted my sister first, as I couldn’t have spoken to her on the phone without bawling my eyes out. I was a quivering wreck, bursting into tears every five minutes. We arranged to have a pub lunch with my Mum and husband, and we bumped into some friends while we were eating so had more celebratory hugs. It was an amazing feeling.
I was told that chemotherapy was likely to start in a couple of weeks, so I cleared my diary for September. It turned out to take a little longer than that, due to longer waiting lists than usual, but as I write I have just found out that it will all start on October 5th.
Phew, this has been a long post! It’s scary to relive those awful moments, but I received such an amazing reaction from my first cancer post that I wanted to share this too. I hope it is helpful to anyone who is going through a similar experience. I know that everyone is different and the treatments can be in a different order for a lot of people, but I think my route is quite typical for many other breast cancer patients. I think that the surgery is the easy part, certainly if it’s ‘just’ a straightforward lumpectomy like mine was. Two months later, my wound is still tender and I don’t have full movement in my shoulder, but I can’t complain. It’ll get a lot worse after the mastectomy though, but that’s all in the future and there’s plenty more which will happen in the meantime…
Although I find it really hard to write about such a personal subject, I hope that it helps others who are going through a similar experience. I really want to demystify cancer and encourage people to talk about it. I never mind talking about it and do try and remain positive, which I achieve most of the time. Breast cancer is discussed in the mainstream media so much more these days, helped by podcasts such as You, Me and the Big C which is inspiring, honest and so relatable.
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