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not made up

Another month on and I’m still nowhere nearer to getting rid of these nephrostomies that I hate. Sleeping with them is the worst. But not the worst that is happening to me right now.

I still can’t eat much of anything at all, and it’s really getting me down. Because I really do like my food. I sit here dreaming about food that I know I can’t eat, purely because my mouth and throat won’t co-operate with the rest of me. I don’t know what to do about it and the doctors don’t really know either so it’s back into test territory I go. I’ve lost 11kg in the last five weeks since I was last weighed, back when I was in hospital last. That’s a lot, for me. I’m actually at my ‘ideal’ weight but it feels wrong and I can’t enjoy it because I’m tired all the time and I can’t wear any of my clothes because of the neph bags.

I’m actually trying something new with those; I’m trying them without the leg bags attached. I have to empty them more often, but it’s easier to get around (without two tails) and I have some sense of feeling normal because I can’t physically see them. and more clothes fit me without them. Which is nice. I’m only the second day in and I’m sure it’ll bite me in the ass at the first opportunity by exploding all over me in public, but hey, I have to try to feel normal or I’ll just sit here moping all the time.

But back to the eating part. I don’t understand why I can’t eat. I want the food, it’s there in front of me, I just gag when I try to eat it. Leftover reflex from the hospital maybe? The food in Birmingham was shockingly bad. Surely it can’t still be that though? The hospital are doing some more tests; a camera down my throat, a contrast CT of my digestive system, and an MRI of my head. I’m not sure what they’re looking for or what they’ll find and that scares me because if there is anything there, it’s new. It’s something that has appeared since my last scan in January, or my last PET scan in October.

I’m trying to be positive about it all but it’s hard and all I seem to do is moan. basically because I’m tired of having bowel issues and because I want to eat food. I keep trying to trick myself by eating my favourite things but I still can’t finish anything. Having another go at this tonight which I’m sure will go badly or worse, I’ll be sick at the table and embarrass myself completely. Dinnertime today has been a washout and breakfast was non-existent so I’m counting on tonight to bank my calories for the day.

No pressure, then.

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I had my operation on 20th February but things are not over once and for all by a long shot. About a week after my operation I was released from hospital, knowing the surgeon had removed all of the tumours but hadn’t been able to remove all of the cancer cells. So I have that lingering at the back of my mind all of the time.

As if that wasn’t bad enough I’ve had post-op problems with my bladder in the shape of a fistula which means I now have nephrostomy tubes connected to my kidneys to get rid of the urine. I went into hospital with a massively high fever and two weeks later I’m out again and home, but still trying to get to grips with my new life. I have a wheelchair downstairs because I’m too weak to walk very far, and I have bags of urine strapped to my legs making it difficult to wear ANYTHING I own outside of the house.

I’m trying not to be miserable. I’m still here, I keep being told. I should look at each day as a gift. But it’s hard. very hard. To walk into a hospital with no pain and no medical appendages and to be wheeled out five weeks later feeling a fraction of the person you were.

I’m off to Devon for a few days after the weekend. I’m hoping it’s sunny so I can get away with maxi-dresses to camouflage the bags. I’m hoping a few days away from home with the family will put things back into perspective for me again. I really do want to feel better.

I’d say I’ve had a good start to the year.

I joined the clinical trial and even though it’s in the early stages they’ve had positive results for Cervical Cancer with the drug. It turns off mTor receptors. It isn’t radioactive, just makes me a bit tired and a bit sickly. I hope it works out and gets to be mainstream one day.

I’ve also had my appointment through for my operation: in ten days, it will be over, one way or another. That is if all goes well with my pre-op this week. But I feel fit and healthy, and my blood work and ECG’s the last few weeks have been fine, so I’m almost optimistic about it. Of course, I still remember that they took the operation away from me at my pre-op last year, so I’m refusing to get overly excited. But if this happens… I can’t even type the words for fear of jinxing myself. It will just be very good.

I haven’t been doing an awful lot the past few weeks. Or maybe I have. I have been to my old zumba class a few times – pretty amazing considering I’m technically on chemo and I’m absolutely lazy. I’ve not made anything, though I’ve been buying fabric and looking at patterns. I’ve subscribed to a couple of magazines. I know, that’s pretty brave/optimistic of me, isn’t it? I’m making lists and thinking about what kind of things I want to make this year, now I’ve tried a few more things out. I’ve been looking at booking more courses, though the timing depends on what surgery I end up with. We’ve booked two short breaks for later in the year. It was my son’s 5th birthday – a dinosaur themed party at The Manchester Museum. ‘It was awesome’ (his words not mine). And then the week just gone, I went to a massive crafting event at Trafford Park.

I’m hoping I can be more upbeat on here again. I’ve realised my condition is never going to go away, even if I get technically ‘cured’. Ignoring it and omitting it isn’t going to work for me. But it’s not going to be the driving factor in me writing any more either.

If I don’t write again sooner, I’ll see you on the other side of this operation.

Keep your fingers and toes crossed for me, eh?

x

I’ve been in two minds over whether to knock this blog on the head. Or have a hiatus for a while. Or to make the opposite decision to write more frequently so I might write about different things. It’s not what I set out for it to be at all, and when I read it back I guess my life doesn’t sound like much fun. And my posts of late are just updates on where I’m at with my treatment. I’m tired of writing about cancer. Especially when I feel healthy. I feel fine right now. I have no pains, I’m living a normal-as-possible life. I don’t look or feel like someone who has cancer anymore. I do though. So how do I keep it off here, when that little fact of my life is there, in the background, all of the time?

I had a pretty good New Year ‘s Eve; spent the night on the sofa at home with my husband and our four year old, who we decided to let stay up for the occasion, if he could stay awake (thinking more of the lie-in we’d get the day after too, to be honest). We watched Wreck it Ralph, the Little mermaid, and then switched between Gary Barlow and the Hootenanny until the fireworks and for a little while after. One bottle of buck’s fizz and one bottle of Prosecco consumed, along with fillet steak and grilled vegetables. Yep, pretty satisfactory as far as celebrations go.

So I guess I’m supposed to review 2013 too…

Well, it wasn’t a bad year. I’ve been trying to decide if it was better or worse than 2012, and I really can’t. 2012 was the year I was diagnosed after being very poorly for a while. And when I think of the last couple of months of the year, the effects the radiotherapy had on me and the trauma of the Brachytherapy? Ugh. But the earlier part of the year wasn’t too bad, I suppose.

2013 was different because I knew all the way through the year, right from the get-go, that I had cancer. I was still pretty ill from the radiotherapy, for the first six months at least. I thought I’d kicked it for a while though – and that felt great. But then there was all the waiting, the hospitals changing their minds about whether I was getting to have an operation or not; finding out that I’d been misdiagnosed as node-negative and that my situation was worse than we all thought, and the recent death of a lady I clocked up a lot of hours with in the chemo suite…

I don’t know.

The last year has been a massive learning experience and for that, there’s a lot to be grateful for: I know a lot more about myself now. I know who the people I can count on are; I’ve lost a fair few friends, made a whole bunch more of them, and built far stronger relationships with the ones who really have been there for me through this. I’ve discovered sewing, finding something I can do that is creative, a way to be absorbed in something other than my current situation, a way to keep calm and stress free. I’ve realised that it’s okay to say no to things I don’t feel like doing, but also that I shouldn’t always trust my gut feeling about whether I want to do something or not: I’m lazy by default, and I’ve learned how to shrug that off and go to the park or the seaside or climb mountains instead of sitting at home alone: I also know better what my limits are, and when I do need to stay home and rest. I’ve spent more time with my family and given more attention to my son than I think I otherwise would have. And it’s been the first year we’ve been debt-free since the last century.

I’ve changed a lot in myself, too – both physically and mentally. I want less material things. I don’t know if that’s partly because I can afford things these days, or if it’s because my values have shifted from material things to the things that really matter, like friends and family and spending time with people and appreciating them, and just appreciating being happy when I am happy. Strangely enough, I’m happier with myself in general now. Physically my body is the worst it has looked, maybe ever – but while I’m still here, still able to walk and talk and play with my son and eat good food I don’t mind. Maybe that’s what losing your hair does to someone, strips away a layer of vanity. I don’t know. For a while I didn’t even recognise myself when I looked in the mirror. Now I’m coming back, but I know it may only be a temporary thing. Losing my hair isn’t the worst thing that could happen anymore because it already did once and I lived, didn’t I? (I’m shrugging here, behind the keyboard). In some ways I’m more selfish (yes, I do play the Cancer card sometimes when I’m not getting my own way) but in others, I’m more likely to give more of myself away. There are some people I would do almost anything for now when I might have made excuses before. I definitely like myself more than I did.

In short, I’m thinking of 2013 in a positive light. I kicked some ass, had a lot of rest and reflection, learned a few new skills and had time to be creative, and found people who matter. As I go into 2014, I feel positive despite still being in one hell of a shitty situation (apologies for the swear, just no other word does it justice). I still believe that there is someone or some drug out there that will take all of this away and make me better. People are doing brilliant things with research these days.

The only thing I have to say to 2014, is ‘be kind’.

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.

x

She-Ra

She-Ra

 

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.