It has been so long since my last blog I was beginning to get a few “U OK hun” messages. But I wanted to wait until I was fully recovered from surgery before looking back on it and then a rather busy General Election week at work and a family holiday to Devon got in the way.
So surgery all feels like it happened a long time ago now. I had my lumpectomy on Friday 19th May and all went well on the day. I was only in hospital as a day case as expected and the recovery has been straightforward. I seem to react well to general anaesthetics as I woke up giddy as a kipper and feeling on top of the world. By the next day, I was in a bit more pain but nothing a few paracetamol couldn’t fix. The surgeon told me she’d taken a ‘fairly sizeable’ area of tissue away but I was in a post GA haze at the time so this was quickly forgotten.
The most painful aspect of the operation was having all the lymph nodes removed from under my arm. It was very sore and I’m still doing stretches three times a day. You can get something called ‘cording’ where little strings of scar tissue, that feel a bit like ligaments or tendons, form. If you don’t keep moving and they really bed in then they effectively tether your arm and restrict movement. I’ve attracted many a concerned/comedy comment as I lean nonchalantly up against a wall, pulling a pained face while trying to reach my fingertips as high up as possible. For a while I thought my days of throwing a ball for the dog or doing front crawl at the swimming pool were over, but a few weeks on I have almost full movement. I arrived home with just the one drain in (I’d been told to expect two) but that was the most annoying thing about the first few days. Having to carry an enormous bottle around that was attached to a tube that drained excess fluid from under my arm was irritating to say the least. The one evening I knelt on the tubing as I got down on my knees to kiss Freddie goodnight was a particular low point. I’m afraid his now burgeoning vocabulary may have picked up a swear word or two! Having it taken out was worse than carrying it around though. I’ll spare you the details but safe to say it would have been advisable not to have come off the painkillers the day before!
As far as the breast surgery went – it was basically a breast reduction. After one of the male doctors mentioned being ‘deformed’ afterwards my hopes for what it would look like were not high! I kind of envisaged being totally lopsided and had looked into padding options. The whole area was very well strapped up so couldn’t see the results of what was left for a few days. On day five the surgeon unveiled her work and I was pleasantly surprised with the cosmetic outcome. When I’m wearing a bra you really wouldn’t notice and that is such a huge psychological boost. I wouldn’t normally encourage all and sundry too look at my cleavage but as you can see from this picture, last week on holiday in Devon on the beach, you can’t tell the difference.
So far, so textbook recovery. Then came results day, the moment I’d been dreading. I knew I could still feel a lump there the day I went into surgery but I was vainly hoping it was just scar tissue and the tumour was dead inside. The results were delivered by a surgeon I didn’t know as mine was on holiday. They were not what I hoped. The area of cancer taken out was double the size that had showed up on the scan and one of the margins was ‘close’. They look for a minimum of 1mm of cancer free tissue around the tumour to be happy with the result. Whilst mine was not a positive margin I was told it meant more surgery. I was devastated and had a full-on wailing, teeth gnashing, fist clenching breakdown in the car park of the health centre. It was worse than the day I was diagnosed as back then the horror was laced with hope that the chemo would shrink the cancer to nothing. Now it felt like after four and half months of hard work I’d failed at the final exam.
Then just as I picked myself up and came to terms with them going back in to shave off a better margin, worse news was to come. When I saw my regular surgeon the following week expecting the new op to be signed off, I was suddenly hit with the news I would need a mastectomy. I had something called ‘Lymphovascular Invasion’ (LVI) around the tumour, which means the cancer has gone into the lymphatic system of the breast giving it the ability to spread. Though we knew this, as it was in 4 of the 20 lymph nodes they’d taken out. I signed the form for the surgery the following Friday and left in a daze. I was mentally shattered, it felt like the cracks cancer had formed in our world were getting bigger and bigger and we’d lost the ability to fix them. One of the worst parts was having to cancel our holiday to Salcombe in Devon (our favourite family spot) which we’d booked at the beginning of chemo as something to look forward to. Now instead of eating ice-cream by the sea it looked like I’d be necking codeine on the sofa.
But the wonderful thing about the human spirit is that when plunged into the depths of despair, you find your internal warrior takes over and the fighting will comes back. So, I set about arming myself with all the information I’d missed about mastectomy recovery. And through the process of that, a little miracle occurred. After a chat with a surgeon friend of the family - intended to get advice on reconstruction options - a question emerged about the kind of cells that were present in the ‘close margin’. From the pathology report it wasn’t clear whether they were cancer cells or just the Lymphovascular Invasion. As if it was LVI, that is dealt with by the radiotherapy NOT by surgery.
Armed with this information, I went back to my surgeon to ask the difficult question ‘Is this mastectomy needed’? After another chat with the pathologist it turned out I had a 2mm margin clear of full-blown cancer cells. A much better result she agreed, and a scenario in which she would never suggest a mastectomy. No further surgery required.
(I should add a note here to those of you that I know will be reading this saying, “if it was me I’d just want the mastectomy to make sure there was no chance of the cancer coming back”. It’s a common misconception that mastectomy eradicates the risk of recurrence. It doesn’t. Lumpectomy + radiotherapy is now accepted as being just as successful as mastectomy. LVI raises the risk of recurrence slightly (by around 3% over 10 years) BUT very importantly, having a mastectomy does not change this risk. So, in my case it would have been completely unnecessary).
I was ecstatic. Finally, we had halted the flood of bad news and we left the breast clinic literally kicking our heels and high fiving each other. The most wonderful part (after not losing a boob) was that our holiday was back on! And another little miracle…our week away coincided with the sun getting his hat on. After the rollercoaster of the last few weeks a week of sunning ourselves on the beautiful beaches around Salcombe was exactly what the doctor ordered.
To add to the celebratory mood my hair loss has slowed enough for me to start blow drying and straightening it again. A trip to the salon for my roots is not far away. And the warmer temperatures have encouraged my brows and lashes to grow back with a vengeance. The fog is lifting and I am beginning to feel like my old self again.
Signed off for radiotherapy
We have returned from holiday refreshed, a bit sunburnt, and ready to face part three. Being signed off for radiotherapy was a lot more of a trial than I thought it would be but in a weird way it has re-energised me to get through this and out the other side. I do not want to know about statistics and prognosis. I cannot let myself sink into the well of ‘what ifs’.
My radiotherapy planning appointment is next week and I start getting fried by the machine a week later. Then I am done, dusted and getting back to living my life.
I apologise for the amount of scientific technicality in this blog; cancer is a very complicated disease and as it turns out it pays to be across exactly what it is doing to your body. Each case is individual and in medicine there is no black and white. No one can give you any guarantees. But one thing I know for definite is that I am not a statistic.
(A diary note: I’ll be in Tatton Park this coming Sunday 25th June starting the Cancer Research UK ‘Race for Life’. I’ll be talking about my treatment and hopefully running in the 5k event. If you’re running it then come and say hello! If you know someone taking part then please remember to dig deep and sponsor them to raise as much as possible for this amazing charity).