Monthly Archives: December 2013

Sometimes I wonder how I’m able to keep track of everything; it changes far too often.

Right now I’m horribly paranoid about where I’m up to with my treatment. Lots has happened this month.

I saw the consultant at the beginning of the month and she’s referred me to one of her colleagues who works on clinical trials. At first I was worried about this but I’ve come to think of it as more of a chance to get to try something that might help me that wouldn’t be available to me otherwise. Like I’m getting to queue jump or something. If I’m accepted as a candidate, that is. My appointment finally came through today after waiting for three weeks for the date and confirmation. I’m a little bit excited/optimistic about it. I hope they can come up with the goods for me.

I’ve been given the name of another professor running a trial in London which is still recruiting too; a friend is currently on the trial and it’s worked out well for her, so if I don’t get a nod from the trial here, this is another option I’ll be trying.

As well as this, Birmingham called back. The surgeon wasn’t happy that I was refused the surgery in the MDT. He called me back there and I had another MRI, and then waited seven hours (a current personal waiting-around-a-hospital record) for him to explain that his MDT voted against him but he still wants to try it. He told us that it was a very risky operation, that as well as the exenteration he would need to remove a portion of the muscle at the top of my left leg (which happens to be my ‘good’ leg, I have a limp sometimes on the other since the radiotherapy) which may cause weakness or paralysis on that side, depending on where the nerves are. Also, there’s a 5% chance of mortality with the enlarged node being next to an artery. These were the reasons it was denied in November. However, he is running it through his MDT again in January; if he gets a yay he will do it, if he gets a nay, then he’s referring me to another doctor in London – and if this other doctor says no, then he will tell me it’s inoperable.

I came home from Birmingham annoyed at having to wait for that long to be told that he wants to try to do an operation that I didn’t want. I’d gone through days of being upset about it, being confused about why he was calling me back when they’d decided against the surgery, polarising against the whole thing. Then the next day while I was at The Christie for a kidney function test I found out that one of the ladies I spent the summer waiting in the chemo unit all day with had passed away that morning and all of a sudden I needed the operation at any cost.

It kind of shook me up. That someone with the same type of cancer as I have, who was fine over the summer – in fact, in better health than I was because she was able to have all of the treatments in time on her plan as opposed to me being allergic and too low in white cells to be able to keep to schedule – could deteriorate so quickly. That someone who reassured me and pretty much held my hand through my last course of treatment, a wonderful woman and important part of our little group, is gone.

I know I’m not well. I can feel things growing and I’m having familiar pains. This, on top of the MRI and PET\CT confirming that the primary tumour is growing again.

Hopefully this will be another thing that will change pretty soon, too.





So Birmingham finally got back to me and all the worrying I’ve been doing about having a massive operation, the full pelvic exenteration, has been for nothing. Because I’m not having it. Birmingham won’t or can’t do it – I don’t know the why’s or wherfore’s of it yet – but I don’t have to go into hospital a long way from home for three weeks plus to have everything below the belt removed.

I’m relieved about it. I think my husband is too. I’m not sure we’re supposed to be – because this does mean that I’m currently stuck with a tumour and at least one lymph node that has active cancer cells within it. But we’re relieved that I don’t have to go through this – especially over Christmas. And we’re not sure which part we’re happy about; that I get to keep organs that aren’t causing me problems; that I get to live without a colostomy and a urostomy for a while longer; or whether it’s just that I’ll definitely be home for Christmas this year, and I don’t miss my sons birthday in January.

I don’t know if my current calmness is going to be short lived. If this is only temporary relief. That as soon as the consequences of not having had this operation sink in I’ll freak out and go back to crying myself to sleep. I don’t know this yet.

I have an appointment on Monday morning at The Christie to discuss what happens next. I’m hoping for more rounds of chemo. For another blast at Paclitaxel, which seemed to do an awful lot after just one dose last time. Or something else which may work just as well.

I’m trying not to be annoyed at having been talked into this detour of a second opinion that has resulted in nothing except maybe my last course of treatment being… I don’t know how to word it… not quite up to par? I certainly think I would have been given an alternative to Taxol last time if they hadn’t thought they’d be passing me off to Birmingham… maybe that’s just paranoia, who knows. At least we went down the road, cross checked with another surgeon, and can say we tried to get the operation even though I was terrified of them saying yes to it.

I don’t know if the surgeon has just signed my death certificate with his refusal to take out the Cancer. But right now, and for the past few days, I’ve been happy. I feel so much more positive about kicking this thing than I have for months. I still have a lot of fight in me, and by the powers of Grayskull, I’m gearing up for round three.