I’ve recently created a memory box, filled with those special things that hold the most precious memories of our life together. On the dark days, it’s something that I’ve been advised will help me to recall and revisit happier times. And in order to create this I’ve spent time going through Lou’s things and that’s how I happened upon this diary. Started in 2007, on Lou’s 36th Birthday, it records her first cycle with chemo onwards and like everything else she wrote it is honest, warm and full of insight. This is the first of several chapters.
Part 1: BEFORE
Chapter 1: Doctors & Discovery
Doctors are sneaky but I’ve finally got them sussed. They drip feed you information because if they were to dish it all out in oner, they’d be faced with gibbering, blubbering wrecks. Here’s what I mean so far:
15/12/06: My 36th birthday and first appointment with Mr. C, who we’ve waited to see for AGES. He tells me he can fix my leg by replacing most of the tibia with titanium. This is good news as my fave US surgeon Dr. JJ, has said he’d also need to replace the knee. I like the idea of holding on to my knee though so decide Mr. C is fab. I’m warned I should have a biopsy.
27/12/06: Biopsy… pretty nasty as they use a local anaesthetic and I can feel the sensation of them scraping inside my bone. Yuk! Or as Snoopy would say “Bleah!”.
12/01/07: Second visit to Mr. C and he tells us it’s malignant. But no need for chemo and the same op.. Also low risk of spreading. This is bad news but somehow doesn’t feel bad – I realise that it’s the thought of chemo that I hated the most and I don’t need that! My biggest upset is the likelihood of missing my work trip to NY in the first week of April.
20/02/07: Operation (which means I’ll miss the end of Feb Ny trip too – SOB!)
23/02/07: I see Mr. C finally (With a posse at the end of my bed – I wish I was wearing fab designer clothes and make-up instead of an M&S nighty, no make-up and mental patient hair. Then they’d realise I was a proper person, not just a patient or a case) He now tells me had to reattach all tendons and muscles elsewhere so I can’t put weight on or actively use any of the muscles in my leg for 6 weeks. It seems obvious but I wonder why he didn’t tell me this before. He also tells me he took some calf muscle to put over my knee. (In the following weeks I came to realise that my knee joint isn’t swollen, it looks puffy ‘cos of the inserted muscle. And the massive dent (more like a valley) in my calf, is not just where the brace cuts in… it’s where the muscle’s been removed. (As of today (31/03/07) I haven’t asked will it fill in ‘cos I suspect i know the answer). Finally he asks if I like my new straight leg. I hesitate to answer as to me it doesn’t look straight. M & D assure me it is, it’s just all the swelling.
06/03/07: We’ve been called down to see Mr. C, which is strange as we were told he needed to see me 6 weeks post op, not 2. No-one will explain why over the phone though so here we are again. I ask Mr. C why my leg isn’t straight. It’s like this (bowed hand-drawn pic of Lou’s leg) ie it sticks out to the left from knee down so I look knock-kneed on one side. He tells me that’s how legs are. I explain my other leg isn’t like that though and he tells me my other leg probably is the wrong shape. This isn’t a great answer. I know I’ll be really conscious of it and of people noticing. Anyway as Mr. C points out and quickly proves that the least of your worries…
He introduces me to Dr. JW, the oncologist. The tumour in my leg was much higher grade when they biopsied the whole thing post op. But it’s also incredibly rare. So rare in fact that no-one really knows whether chemo might work to kill any cells that would be floating round my system. They describe it as been at the far end of the scale in terms of nastiness. I’m a bit stunned. M & D & A are shell-shocked.
The doctor says he’ll consult with specialists internationally to see what they think. But he describes it to us repeatedly as a mess. I wonder vaguely about life and death. It feels a bit like watching my life thro’ a mist or a veil. I feel detached. And mostly I just feel awful for M & D. How can they lose Richard and then have to hear this awful news about me? It’s so unfair for them.
Dr. W says chemo would be an option, even tho’ it’s not certain it will have an effect. He explains it will be 3 days every 3 weeks (Take note for later!)
The next morning I remember waking up and looking out of the bedroom window, over towards Beamsley Beacon. It’s sunny & clear. A beautiful day. But I feel strange. Sort of muted and uncertain. I don’t know if I have a future any more. I could die. And I could die soon. I talk to Al and try to explain this feeling but it’s hard to put into words . I say something like “It’s as if nothing is the same anymore. Like I’m viewing things thro’ a haze.” Strangely enough this feeling doesn’t last, mainly because I take a (what I believe is a) proactive decision to think positive and not waste time worrying. What’s the point in worrying and crying? It won’t help me. I’m still thinking like this as of today 31/03/07… but I wonder if it’s positive thinking or just the fear of not facing up to realities. Denial is such a powerful thing.
Besides my positive thinking though, the main thing I’m aware of is how awful I feel for M & D, especially M. And Alberto too. I feel guilty that he’s stuck with me… a girl with (or without?) cancer. A girl with mismatched legs who can’t walk. I sort of wish I could tell him to stop loving me and find a new girlfriend. And I do tell him this jokingly. But it’s not entirely a joke. I do sort of mean it. But if he did leave me… I’d be devastated.
12/03/07: Dr W calls to tell me he thinks I should definitely have chemo. I don’t know why but I’m shocked and stunned. I somehow had thought that be the conclusion he and his international colleagues would come to, bearing in mind no-one knows if it will work… I had talked myself out of having chemo this past week. So I get off the phone and cry for the first time! More from shock than self-pity.
I spend the next week debating with myself, M & D & Alberto and hassling Dr. W to tell me what his other specialists thought. A pathologist in Holland was the only who was familiar with DEDIFFERENTIATED ADAMANTINOMA (Sorry – I should have mentioned it sooner) but he couldn’t say if chemo would work or not. The other people consulted were: a guy who handles a major bone tumour centre in Italy, a similar centre for Austria/Germany/Switzerland, M.D. Anderson Centre in Houston and somewhere in NY.
No-one had ever come across it but 2 of them agreed with J that it was worth trying chemo (the theory being it should be treated in the same way as a high grade osteosarcoma)…
19/03/07: I email J to say I’ll go ahead with chemo. He tells me he’ll refer me to Dr M, an oncologist at Jimmy’s (Leeds).
This isn’t great for me or M or D… we all have sad memories of Jimmy’s and Richard. But it’s not worth dwelling on that…
28/03/07: Today’s my appointment with Miss M (as I’ll call her from now on). She tells me what the chemo will involve. And it’s like the icing on the cake of all the nasty bits of news we’ve had to slowly digest and accept. Basically it sucks.. big time. Here goes:
6×5 week (ie 35 days) cycle:
Day 1-3 in hospital for first 2 drugs (cisplatin and doxorubicin)
Day 21 and 28 in hospital for 3rd drug – methoxate.. but you might need to be in for 5 days with each dose of meths. Which means up to 15 day in out of every 35, most of which are back to back… AAARRRGH!! Double Bleah! M keeps telling me once we’ve left Miss M’ that if I feel like crying I should do. But mostly I just feel angry like shouting and screaming and swearing.
And then this afternoon I finally realise how sneaky the doctors have been… gradually drip-feeding the bad news so I will assimilate it.
I realise that if on the 15th December I’d been told ‘you have a very nasty malignant tumour that no-one knows how to treat but you should have loads of nasty chemo with loads of nasty and possibly permanent side-effects I’d have been reduced to pieces.
But I’m not in pieces. Yet I don’t feel normal either. Oh and before I continue these are some of the side effects:
- Hair loss
- Sore mouth (can get so sore you can’t eat or drink)
- exhaustion (due to low blood count brought on by chemo)
- infection (chemo wrecks your immune system)
- infertility (SOB. This is the worst)
- damage to heart/kidneys
- reduces libido (surprise – surprise!)
- can make you prone to sunburn!
I feel like I want to hug myself. I want to apologise to my body for what I’m about to do to it. I’m telling my body I’m sorry and please be strong and don’t let me down. But I don’t know if it will understand or listen.
I marvel at the fact that you can poison the body and expect it to survive. I wonder who invented these drugs… legal poison. So here I am today. It’s 01/04/07 – April Fool’s Day. I contemplate texting Alberto to say I don’t need to have chemo after all… but I don’t think he’d appreciate that April fool!!
I think I have a long journey ahead of me and it’s not going to be nice. But I’ve figured the trick is not to look ahead but just to deal with each day as it comes… what else can I do?
Footnote: The Adam Ant referred to in the title is Adamantinoma, the rare bone cancer Louise endured throughout her life.