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Good Day

So, I finally started back at work. It was a week later than planned because of a HR hiccup, but all in all the transition back has gone smoothly, with a nice graduated return for the first six weeks. I’ll be increasing my hours in November and again in December until I’m back to full time again in January. This is working out so far. This is good.

I don’t know what I expected from going back. I guess this calls for a list or two:

1) I was worried about not being able to remember things.

This isn’t proving to be that much of a problem so far, which is nice. Things have changed, processes and whatnot, but more has stayed the same than hasn’t. I’m reacquainting myself with the software apps I use, and remembering how to use it when it’s up in front of me. I’ve learnt a couple of new tricks with it too, which is always a good thing. No one is expecting me to do too much, and my colleagues are being genuinely helpful instead of making me feel bad for having to retrain me to do the job I used to do with my eyes closed.

2) I was worried about having to talk to people about being ill.

This is weird with some people but not with others. Some have asked outright how I am, expecting a real answer, not the standard “I’m good, thanks” line. I’ve had to explain to a few people that I’m taking it as it comes and though I’m good now come next month when I’ve had scans it might be a different story. I think most people think I’m cured, that I beat it. I’m carefully telling people that I’m not counting my chickens just yet, but that I’m hopeful. Talking about it isn’t making me sad, though. Or uncomfortable.

3) I was worried that people would have moved on from me.

When I came back to work after maternity leave, too many things had changed. Including the dude I used to have dinner with every day. He’d got himself a new group of dinner buddies and I had the distinct feeling I wasn’t invited to be part of it when I returned. This time it’s been different though. Nothing seems to have changed. The same conversations about the same types of things and the same people after two years. I’ve slotted straight back in again, and it’s okay. Oh, and on top of that, I had this as a welcome back when I walked through the door:

 

Surprise! Welcome back!

Surprise! Welcome back!

 

4) I was worried about the physical aspects, such as my nephs showing through my clothes.

I think I’ve managed to hide them pretty well, I mean, I don’t think half of the people even know about them. I noticed today that I had a kind of bulge where the bags were on my back before I emptied them today, but then I figured, if anyone asks me about them, I’ll tell them what it is. I don’t see why I should be ashamed of them. Yes, they hold urine. But they are there because I’ve had so much radiation that my bladder isn’t viable anymore. It’s because I almost died. It’s because I’m “hard as nails” as one friend has said. No, I don’t want them on show in the general world of the public. But they’re there. They’re doing a good job. And I realised I don’t care what people think of them.

There are things about the job that I’m sure I’m going to get tired of easily. I don’t know, I remember being annoyed a lot of the time before. But right now I think being there is good for me. It’s all about distraction; pretending I’m okay again, hoping I’m still beating the odds.

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Things are still going pretty well for me at the moment.

The biopsy I was worrying about came back negative for cancer cells, which is fantastic news. It means I can relax a little more. For the time being anyway. I’ve been told that I need to have an operation, the ‘diversion’ the doctors mentioned when I came round from the EUA in July. They want to swap the biateral nephrostomies with a urostomy. I panicked at first because I really don’t want to go into hospital and have to have another operation anytime soon. I asked them if it was urgent, and they said no, but that it should be done sometime in the next twelve months. They also want to make the appointment to swap out my nephrostomy tubes with new ones, I’ve had these ones in for longer than the recommended time. That will be any time in the next few weeks and I’m dreading it because I know full well it will hurt. But it’s not a full on hospital stay, so I’m okay with that.

The big news right now is that I’m going to be starting back at work next week. Yep, that’s right. Back to work. In a spur of the moment I called my manager and asked when I could come back, and went to talk to him a couple of days later – and here we are. A lot of people think I’m crazy (mostly people I work with) but I think it will do me some good. Get me out of the house. Get me active in the days. I’ll be interacting with more people, and I’ll have neutral things to think about. Things that will keep me occupied for hours without me actually having to worry about them and bring the problems home. The money will come in handy too. That goes without saying. I’m getting more excited and nervous about this as it gets closer. It’s not back to work as I knew it – it will be a long phased return, because there’s no way I could handle full time work straight away after this. And I’m worrying I’ll have forgotten too much. I’m worrying I won’t be able to concentrate enough to do the job I used to do. I’m worried I just don’t have the organisational skills to do it anymore. I’m also worried it will bore the hell out of me and I’ll regret giving up my wonderful days at home. Two years at home is a long time. I think I’ll miss having quiet time, me time.

I just think I’m trying to live a normal life again. I’ve been tagging along on more of the weekend outings instead of hiding away at home. I’ve been making the effort to see friends more than I have in a long time. And I think that going back to work is another piece of that puzzle. Another routine that needs to start back up again to make our family life more normal. I think that when I go back to work, it will be the marker that says ‘everything is okay’.

I’m under no illusions. I know that I’m not all clear, and that I probably will never be. But I’ve come this far without a new site cropping up. Six months since my operation. If I’m having scans every three or four months then I’ll be due next month or November and I’ll find out if I’m still getting away with it.

The longer I get away with it, the less chance there is of it coming back.

Wow. I hadn’t realised it had been so long since I last posted. Lots has happened. The not wearing the leg-bag thing has worked out okay for me. I have sore patches on my back from where one of my nurses didn’t dry my skin before placing the stoma bags on one time, but I’m hoping over time that can get better and heal and I won’t be all itchy forever. My energy levels are back to more or less normal. So is my eating, more or less. I still don’t eat as much as I used to, I don’t know if I ever will get back to that level – but I’m thinking maybe that’s not such a bad thing at the same time. Also, the depression I’ve been caught up in has lifted. I’ve been able to get up out of bed, I’ve been able to enjoy things again, I’ve been able to have a life again as opposed to just being alive. All good.

People are starting to treat me like a normal person again. That’s one thing I’ve noticed recently. Maybe I’m acting differently? I don’t know. Maybe I just look normal. After the op and the not eating, I ended up losing a total of 21Kg. That’s about 3st or something I think. A lot. Nothing I wore fit. Trousers would literally fall off me. Tops felt like tents. I’ve never been in that position before. It’s always been the other way for me, since I was at school. I had a fear at first that I’d start liking being stupidly thin, and that that would add to my eating disorder, but no, I like eating far too much now I’ve started to be able to again. I suspect I’ve put on some of the weight that I lost. I’m just going to have to pick up on the exercise thing if I want to carry on fitting into the new clothes I’ve had to buy the last few weeks since I realised I was wearing two sizes too big.

I’m even thinking about going back to work again now. I hated work. I probably still will when I go back and I’ll lament all of this time that I’ve had off from the place doing not a lot. At the same time, I think it’ll be good for me to get out of the house and see normal people and live normally for a while.

I’m still waiting on results. I had an Examination Under Anaesthetic last month and they took a biopsy then from my bowel. I also had a CT scan and an MRI. The two scans have come back with nothing for the oncologists to worry about, though there is some oedema in the vault left by the hysterectomy, and my bowel has drifted south and stuck itself to scar tissue. I’m waiting on the results of the biopsy, and I’m waiting for my next set of appointments to see what’s going on with the bowel specialist, but that will happen at the same MDT where they’ll discuss my poor excuse for a bladder. Since having the nephrostomies fitted, one of my ureters has, I don’t know, closed up or disappeared altogether – they couldn’t find it with their camera when they were doing the cystoscopy. The other one is okay, and I could possibly have had one neph tube removed if it wasn’t for the fact that my bladder has shrunk to tiny proportions and now only holds 90ml when full. So unless they decide to build me a new bladder from my bowels (not likely, I’m pretty sure that has been damaged by the radiotherapy too) I’m going to be stuck with the bilateral nephrostomy tubes forever. They may do a diversion and give me a urostomy, but that’s another operation and to be perfectly honest, I’m terrified of having to go back into the hospital again.

For now, I’m reasonably happy, still trying to come to terms with the schrodinger’s cat status of my cancer, of having cells that may or may not grow another tumour, but not letting it drag me under.

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 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’.

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.