I should have updated this a couple of weeks ago. Longer, really. But I’ve been busy for the last couple of months, and then, well, then there was the bad news and I didn’t much feel like writing anything at all.

I’ve been told that from my scan on 14th November, it looks like the cancer is back.

This wasn’t that much of a shock to me; I’d been tired again, I’d felt anxious about it for a few weeks too. It just hurt to hear it because everything and everyone around me had started to get on with a normal life. Including myself. We’d all sort of, put the last couple of years behind us and started to believe that this might actually be over. But, no. I’m not that lucky. Even when I lie in bed for a week chanting ‘I want to be cancer free, I want to be healthy’, as if the Universe is even listening anyway.

First thing to say is that if it’s back, it’s only small. Not properly measurable. Just back. Just there. And they don’t know how fast-growing it is. Or if any more new tumours are likely to pop up now, what with the first one emerging after over a year off from Chemo and my op in February. They (the doctors at the Christie) are going to rescan me in January and make some proper decisions then, they say. Based on growth, on what else turns up, and how healthy I am I guess.

I feel okay about it now. The results were given to me on Thursday 20th November. I cried for two days and then shook as much of it off as I could, went to a Charity Ball for Jo’s Cervical Cancer Trust, and then went back to work on the Monday as though nothing had happened. I wouldn’t say I’m in denial, it’s just, you know, I don’t know what I’m up against yet. I don’t know what exactly to worry about. How hard to worry? I don’t know what to call it. So I guess I’m just not going to worry too much until I get those scan results in February.

I’m not sitting here doing nothing.

I saw a bowel specialist at the Christie yesterday who told me the oncologist I saw last time I was there had written a letter with recommendations. Chemo, Trials, Cyberknife. The specialist I saw yesterday also offered the possibility of an operation to remove it but only if he thought he could get a clear margin, which is understandable. But also nice to hear, that he’s going to take a proper look and see if there’s anything else he can throw into the mix in my MDT. And I’ve had a letter sent out about the Trials. We found four I’m interested in initially. We’re going to keep trying on that.

This is kind of short and sweet, but it’s the latest.

And I need more luck if you have any to spare x

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.

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.

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.

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.

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