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.

Describe the one decision in your life where you wish you could get a “do-over.” Tell us about the decision, and why you’d choose to take a different path this time around.

The obvious answer to this is that I would “do-over” the first time I went into my doctor’s office with my very first symptom of having Cervical Cancer. I would list all of my symptoms and then instead of nodding and feeling stupid when he told me that my abnormal bleeding was due to my age/weight/hormones, I’d politely tell him that I’d just listed all of the main symptoms of a terminal disease, and that I was requesting to be sent for investigation, and that if he didn’t send me I would be making a formal complaint. That would have saved me the last two years of having to live with this disease. I would have been diagnosed early enough to have it fixed with a hysterectomy, or maybe less. It might have spared me the radiotherapy, and maybe I wouldn’t have had all my hair fall out. It would certainly have spared me and everyone else around me from the trauma of the last eighteen months treatments.

But that’s the obvious answer.

I used to watch ‘Being Erica’, and loved the idea of it. Of being able to go back and change your actions, to be less awkward, to not do that thing that you’ve been beating yourself up about for your whole life afterwards. Never more so than when I started having a clear-out/tidy-up post New Year and found all my journals from when I was a teenager. They’re completely cringe worthy. In my old age I seem to have forgotten how out of sorts I felt, how few people I could trust, how incredibly awkward I was, and how much I hated almost everyone, even – no – especially my friends. I guess it’s like that thing you do after labour. They call it ‘mumnesia’, because you instantly forget the amount of pain you were in after the event.

I’d go back to the first day of the last year in high school. I’d spent the summer working and hanging out with my sister and discovering music while my friends, the girls I hung out with at school, went on their summer holidays with their non-divorced parents, went off on day trips together while I slaved away in a shop, and by the end of it I suppose I’d outgrown them as much as they’d ignored me. I was a different person to the quiet, timid, always trying too hard girl that had left there in the summer, yet still on going back there, I went back to trying to fit in, pretending I liked what they liked still, pretended that I wasn’t royally pissed off with them for what felt at the time, abandoning me. I fell back into place at the bottom of their food chain and let them carry on making me feel like crap for another six months before I finally shrugged them off and did my own thing. This is what I would change.

I’d go back, knowing that in a few months time they’d be copying me. When they laughed at my Doc Marten boots on the first day of school, instead of letting them make me feel bad, I’d keep my head up and tell them how good they were for kicking people with. I’d have made it clearer that I didn’t have crushes on the boys I’d loved the year before, that instead I wanted the tall guy in the back with the long hair. I’d have been more vocal that I’d been listening to grunge over the summer, had found something I felt comfortable and connected with. I’d have started to experiment with make up earlier; and I’d wear the shit out of those second hand flowery baby doll and shift dresses instead of going back to my jeans every time. I would tell them that I wasn’t fat anymore. I was never fat in the first place. And pull them up on what kind of shitty friends they were in the first place, to find enjoyment in making one of their own feel unworthy.

I’d go back, and I’d work harder. Get a proper weekend job, and earn more. I’d appreciate my family. Go and see my grandparents more. Help my mum out more. By this point I’d started getting on with my sister already, but I’d definitely try to tag along with her more. Instead of hiding in my room writing in my journal all the ways a bunch of girls I would cut myself off from in the future made me feel useless.

I’d go back, and just be myself. Be confident in who I was becoming, let myself grow into my own skin and my changing body and shake away the awkwardness that was put upon me. Maybe I’d have the courage to stop being friends with those girls who told everyone else all my secrets to get attention for themselves sooner. I know who the decent people from school are, these days. The girls who were probably a lot like me, who came into their own when they could leave the fabric they’d been woven into at the end of the school year.

I don’t know how much this would change life as it is now. maybe that’s why I picked this as something I’d do over. It’s more to do with having self respect early on, about standing up to the bullies who made me believe I was ugly and boring and fat for far too many years. The things I didn’t do, just so I wouldn’t stand out in a crowd.

If I’d taken a stand at this point, I believe I’d have far fewer regrets today.

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.

Follow

Get every new post delivered to your Inbox.

Join 103 other followers