The Up's and Down's of a Cancer Journey
I found 'the lump' whilst rolling over in bed one evening and thought 'ooh, that felt weird'. It was huge and I still wonder how I didn't find it earlier in the shower, because I had been checking. Also, of course, I felt a bit exempt from breast cancer because you know all these things that make it less likely for you to get it, they applied to me. Had children young, and lots of them, breastfed them, didn't smoke or drink, and ate quite healthily. Too bad.
My first thought when I found the wretched thing was 'That's ok, I'll go wherever Ian is.' Ian was my husband who'd died of colon cancer a few years earlier. But then I thought 'Children. Oh.' And from there on 'losing' wasn't really an option any more.
The first diagnostic appointment revealed it was a 'multi focal' thing, altogether about 6 cm long and 3 wide. Thus the best option was a mastectomy, followed by chemo and radiotherapy. The diagnostician was perfect for me. No beating around the bush, plus she recognised that I had quite a bit of knowledge as I was in my last year of studying nursing. So I had a 'battle plan'.
"Don'y tell me I can't do stuff!-
Then I went to meet the surgeon, who had with him a breast care nurse. They did not like my questions and at the end of that consultation the nurse said to me: 'I know you want to keep studying, but chemo WILL take it out of you, and you WILL lose your hair!' I am not usually speechless, but on this occasion I was. Luckily this was not 'my' breast care nurse, but only holiday cover. Also it made me more determined - don't tell me I can't do stuff!
My real breast care nurse was called Josie and was lovely. Every appointment I had, she'd quiz me about procedures and risks, and side effects of drugs - it was more like a revision session. She organised a Macmillan support check for bras, and drained almost a litre off the seroma I developed after the operation. I was back in placement on a ward three weeks after the mastectomy.
The Tamoxifen I threw away after 6 - 8 weeks; I had every side effect listed, and although I could put up with the physical bits, I was so depressed that I decided I'd rather have another mastectomy, plus chemo, plus radiotherapy than go on one more day with that wretched stuff.
This sounds all matter of fact, so here's the 'emotional' bit:
Amazing friends!!! The first thing one of my study buddies said was 'you must let us help you, so that we feel we're doing something'. People couldn't do enough for me and the family. I am a Christian, and my church were fantastic - Chemo weeks meant I didn't have to cook, but people delivered hot food to my house (we did have one week when we had 4 different lasagne's.....) and because they had got it into their heads that chemo meant no immune system, I had people come clean a couple of times a week. I could fully concentrate on studying. Uni friends came with lecture notes and caught me up - without them I wouldn't have got a BSc (Hons) First Class (I am a bit proud of that). The lecturers were fantastic, too. And as I started work, I was able to just dash off for the Herceptin or the Echocardiogram during work hours.
Basically, most people were totally encouraging.
Making up with the surgeon. The morning after the mastectomy he came on his ward round and drew the curtains. I said that before he did anything, he'd have to do one thing for me. He said what. I said 'smile'. He smiled, and the world lit up. It was that easy...
Pineapple. The tastiest thing in the world ever! - Funnily, I had a real craving for pineapple for a couple of months before I found the lump. Maybe my body was trying to tell me something....
The new hair! It's lovely and curly and thick.
Not so good things:
Aforementioned breast care nurse (not Josie. Josie was fab). When I graduated I sent her an email of how she had treated me, saying that that would have left other people in tears, that she shouldn't do that to anyone else and that I had got a 1st. She then complained to my manager saying I had misappropriated NHS email (I hadn't. I had used my private email and the address she'd given me). My manager, however, was one of my supportive people.
When my hair started falling out and I was telling a friend it was falling out and she said 'really?' and put her hand in my hair and pulled out a handful. I wanted to slap her. Similarly, the first time I went to work without a headscarf, and the first patient I went to said 'that's a bit of a radical hair cut'. (Mind you, I told him why it was as it was, and it turned out his wife was really ill - not with cancer - and he was having a bad day).
Tamoxifen. I swear that was invented by the devil! What came with not taking it was an oncologist who really wanted me to have it and friends begging me to keep taking it. However, within a few weeks of having stopped it, everybody - including the oncologist - agreed that for me that was the right decision.
The fear. When I have a headache, I obviously have brain mets. When I cough for more than a day, it must be in my lungs. When I have a bit of a stomach cramp, it's ovarian. If anyone has a tip of how to stop being paranoid - please tell me!!!
"I Never accepted it as 'my' cancer" -
Where I am now: I am almost reconstructed - there's another good thing - the plastic surgeon is fabulous - tall, dark and handsome (one of my friends has a real crush on him, he's like out of a film!) AND he has a brilliant bedside manner. I chose to have a DIEP flap done, which means they take the tummy fat and make a new boob from it. So now I have a flat tummy (yay!) and a right boob that is still smaller than the left, so we will cut the left down to size in November and then I'll be all done.
Has all this changed me? Maybe. I don't know. A lot of people who have gone through similar stuff seem to be a bit obsessed by cancer. I don't want to give it that power. I never accepted it as 'my' cancer. I didn't want it in the first place, it wasn't mine and I corrected everyone who said to me 'your' cancer. On the other hand, I have been able to look after patients with cancer in a much more empathetic way. I can give them tips about pineapple and how you avoid feeling sick with an extra flush of fluids after your chemo. And that it's ok to have sad / angry / happy / quiet days.
Also, I have a lot of faith, and I don't think without God I would have done it that easily. I am nothing special - I try to get the best out of every situation and look on the positive and not dwell on the negative (which is why the Tamoxifen had to go).