thingafterthing

After the weigh-in on my latest trip to Clinic E I found myself sat waiting for new money kilos to be converted into some old money pounds and ounces I could understand. I was fearing the worst and expecting a familiar dressing down from the diet police, but unexpectedly I found myself facing smiles rather than thin lips.

I’d actually managed to put on a whole seven pounds since I was last weighed. I’m now eight stone ten. My cream cake and Chelsea bun diet seems to be paying off. There’s a way to go before I can call myself a normal weight but at least I’m going in the right direction.

My BMI is now 18.9, which turns out to be a way short of the UK average (26.9) and even a bit off the Ethiopans (19.3)  a people not known for their hoarding of fat. But I’m on a roll, I’m coming after them.

So I’m still on two of the protein drinks a day, though there’s talk of cutting those down/off if progress continues. There’s no doubt I’m able to eat more and more often these days, though it’s still a bit of a struggle at times. My appetite, though better, is still a way off what it was.

And because my saliva production is poor there are some foods I have problems eating; dry stuff like bread and, infuriatingly, chicken. Now these days eating the occasional chicken body part is as far up the evolutionary scale as I’m prepared to go for protein, so it’s been particularly infuriating to find myself chewing and chewing, trying to get each forkful into a swallowable condition.

When the dietitians said try chicken thighs and since then I have and it’s worked, it’s been pretty much a time for singing and dancing.

I’m getting well used to Clinic E, and it seems the feeling is becoming mutual. These days the nurses say hello Mark when they see me. Now this is all very cheerful and matey, though I can’t help sensing the bonhomie is only a step away from their thinking ‘oh here he is again’.

This time I was ushered in to see Mr A for what has become my regular examination, only to find yet again it wasn’t him I would be seeing. He apparently had more serious patients to see.

Well that’s probably fair enough, I know what they mean. But it is slightly off-putting to be termed non-serious, as if I’m somehow not pulling my weight and need to pull my finger out. Don’t these people know how hard it was to put those seven pounds on? Ethiopians aren’t easy to beat.

I must have looked a little disappointed because the day’s doctor was at pains to tell me that he knew what he was doing, had done it lots of times before, had all the qualifications. In fact I was beginning to think he was protesting a little too much. But I thought well I know the drill, if he needs any help I can probably nudge him along.

Of course he was brilliant. He managed to combine friendliness with professional efficiency in a way that made trusting him easy.

He was a bit let down by his equipment though. It turns out Mr A holds onto all the hi-tec stuff. His assistant has to do things manually. So it was back to how it must have been done in the old days. There was no screen to view the images from inside my throat on. The doctor just had a hand-held viewer attached to the camera, which was at the end of the same old tube that he stuck up my nose.

But maybe the old ways are the best. After feeling around my neck for lumps and saying everything looked fine, the doctor hit paydirt. He found that part of the base of my tongue had fused to the side of my mouth as a result of the radiotherapy. Not easy to spot, and something the student nurse he implored to get close and take a good look struggled to pick out.

But it did explain why that area remained sensitive. Nothing to be concerned about though.

I was sent away with another appointment, and with a homework assignment. I have a minimum of another seven pounds to put on before I can think about beating the Ethiopians.

It’s been a while. In fact it’s now been a year since I went to my GP and said I’ve got this lump, pointing to my neck. As they say round here, it’s been a helluva year.

It feels like the worst is over, though my cautious self tells me not to be complacent. These regular check-ups happen for a reason. And one time when that camera on a stick emerges from my nostril there might be a silent moment from Mr A and he might say something about a curiousity or suspicious architecture or some such flannel. And the ordeal might start again.

So I don’t want to tempt fate. However, nearly eight months after my treatment stopped I have a long list of stuff that hasn’t happened for a while. I haven’t had a needle stuck into my arm for ages; no blood tests, no canulas, no sitting for hours with a bottle of chemo dripping away.

I don’t have to get into an ambulance every day and spend hours at the hospital. I don’t have to sit around waiting to be called, I don’t have to get hoisted up onto the radiotherapy slab, and I don’t have to listen to The Proclaimers.

It’s been a while since I was with a bunch of men who have prostate cancer, watching them sitting round drinking their pints of water before treatment, a while since I had a sleepover on that cancer ward, and a while since I saw someone die in front of me.

Reading back over this blog, I’m reminded there have been some pretty ghastly moments. I realise I’ve forgotten some of those moments, and maybe that’s no bad thing. Some of the horribleness is probably best left behind.

As I’ve said before, it hasn’t been so much as fighting a battle as enduring a sustained period of really bad weather. That I’ve been stoical and managed to put up with everything hasn’t really surprised me. Having MS is good preparation, I’ve had years of endurance.

One thing about MS though is that you’re often not believed. If you say you’ve got a symptom, say pins and needles, or you’re feeling whacked because it’s humid, you tell people and they’ll say oh yes, I get that, awful isn’t it? And you say yes but it’s worse with MS and the people nod, but they don’t believe you, not really. They’re thinking how can it be worse? And pins and needles, that’s nothing, isn’t it?

Maybe that’s being harsh but the truth is, however sympathetic a listener is, only another person with MS (even though no two of we MSers are the same) can understand the reality. The encompassing reality.

But I’m starting to steer away from my point. Which is that I found myself facing a bit of cancer unbelief that was very familiar.

I had a drink. In fact I had my first alcoholic drink of the year on 25th December. I’d talked it over with the dietitians first; they said if you want wine then white would be best, or a light red. I thought a Beaujolais, as it was the nouveau season. They said water it down if it helps, and don’t open an expensive bottle, just in case.

So in the spirit of the festive season I went for a bargain glass of Tesco’s (highly rated) vintage champagne. Which proved to be my mistake. And it was my mistake. No one made me do it. No one had even suggested it as an option. Call it over-confidence. Call it stupidity.

Over the next few hours my mouth became more and more painful. It was like the pain I had with that mouthwash, the one the nurse likened to battery acid. It did diminish, but only slowly. It was New Year before I was fully back to where I started.

And when I told the dietitians about this, I got sympathy, but I could tell they were thinking champagne pain? That’s nothing isn’t it? They said the pain shouldn’t have lasted that long. They implied, gently but definitely, that I was building the champagne pain into something bigger than it deserved. I was deluding myself.

It was a familiar kind of moment. Right then I wanted those dietitians to be me a fortnight before. I wanted them to drink that champagne and feel that pain, and I wanted them to keep on feeling it like I had. Then they’d know.

But of course that wasn’t going to happen.

They did tell me to avoid carbonated drinks for a while. Funnily enough I think I’d worked that out for myself.

On Friday afternoonI returned to Clinic E. I wheeled my way along the seemingly never-ending corridor, past the hordes waiting to be seen at Clinics A, B, C, D, then up to the familiar reception desk at familiar old Clinic E. Where the nice receptionist was all smiles and welcomes.

And I settled myself down to wait in my usual place, by the end of a row of seats, easy for a quick dash into the consulting room. And I waited. And waited.

Now to be fair I was a bit early. And I’ve hung around for longer. But hanging around is hanging around. I was wishing they’d just stick to appointment times. Then I told myself to be patient, it’s a hospital, they don’t know how long it’s going to take to deal with patients.

Then a nice nurse came up an apologised. She said sorry for the delay, the morning clinic ran over, things are a bit late. She said things were about half an hour late. And she was right. Thirty eight minutes after my appointment time, the nice nurse came back and said Mister A is ready for you now.

I’d been expecting some or all of the multi-disciplinary team to be there like before, but there was only Mister A. No team, no  dietitian, not even a student. Mister A said you (meaning me) are an easy patient and as we are so busy….

Then just like last time he put the tube with a camera on the end up my nose and pushed it in. He said turn your head and look at the screen, and for the first time I could see what the camera saw. I asked Mister A what was I looking at, and he took me on a tour of my mouth and throat and the place where my left tonsil used to be. There everything was, my epiglotus, the (surprisingly narrow) entrance to my oesophagus, it was a bit like a moving picture Reader’s Digest. Mister A said everything looked ok, then pulled the camera cord out

Then he examined my neck and that was that. All clear after three months.

He gave me the timetable for future check-ups. Every six weeks for eighteen months, then every three months, then every six months, then every year. So I’ll be coming back to Clinic E for a while.

On my way back to reception to get a date for my next appointment the nice nurse smiled again and handed me a Patient Satisfaction Survey. All the friendliness suddenly made sense. Staff appraisal ratings might depend on my response. No wonder they’d all been smiling.

But fair enough. I filled the survey in. Actually I did it online, which was helpful for those of us who can’t do handwriting too well. And I was pretty complimentary to be honest, apart from the thirty eight minutes, obviously.

I hope the appraisals went well.

More good news this week. My RIG got taken out. After three months of having to put up with a length of plastic tubing sticking out of my abdomen, I got called in to Clinic D at the hospital where a nurse I’d met back in radiotherapy leant over my wheelchair, deflated the balloon in my stomach and all in a trice yanked the tube free.

To be honest it felt a bit like being punched in the guts. The nurse said it was only my stomach going into spasm, just relax. I tried, and as promised, the feeling passed. She dressed the wound, I thanked her, and I was out of there licketysplit.

And I’m now, to my considerable relief, able to sleep on my side, not all the time on my back as I’ve had to since May. The wound looks a bit odd. Apart from the dried blood, most of all it seems now almost as if I’ve got two navels. Which, if it stays that way, will be odd. But also, the dressing keeps falling off. My new navel seems to be in a place where sticky things won’t stick.

The nurses come round twice a week though, bustling about in their Hattie Jacques way, cleaning and dressing and tidying things up, including my rapidly healing wound. I try to get them to share horror stories of other patients they’ve seen, but unfortunately, despite my saying they’re welcome to tell anyone anything about me, they all seem to stick to their infuriating confidentiality policy.

But I’ve also been back to the dietitians, who weighed me and found I’d lost a couple of kilos. So I’m not far off eight and a half stone now, and it’s a long time since I was that light. However, and as I was at pains to tell the diet police, I am beginning to eat more. It’s been a battle to actually get through three meals a day, but in the last week, maybe inspired by the sight of Michael Phelps’ gigantic breakfasts, I’ve managed it on a majority of days. Even though portion sizes may not have been great, and certainly not as great  as Michael’s.

They did come up with some helpful advice though. Like trying Weetabix with extra milk for breakfast, having moist fillings such as tuna and mayo for lunch on lightly toasted bread with the crusts cut off, and tinned fruit with custard for afters. Then they said why not add marscapone to tomato based sauces to take the astringency away, and give extra moist scrambled eggs with smoked salmon a go. So I’m doing all those things, as well as throwing myself into rice noodles, quorn, avocado, white sauces with extra herbs.

I must have been getting a bit over-excited. But then they told me I could get worse again before I really get better. Apparently it’s qute common for things to be going swimingly and then you can get a big setback, with a return of some of the worst symptoms. Well all I can do is hope that doesn’t happen. But at least I should be prepared if it does.

Now, I have to say I’ve been very encouraged by responses to this blog. Firstly by the volume of views (now well over 800) but also by the nice comments people have made. And then there are the gifts of ‘soft’ food, which  have been much appreciated. Less welcome have been the offers of Proclaimers CDs.

Hopefully the worst is well over now. I’m aware I have a way to go in terms of stamina and fitness; I’m  still sleeping a lot and I do feel weak at times. Then there’s my stubble growth. anywhere near to where the radiotherapy beam went doesn’t seem to want to sprout, so I only get bristles above and below the lips, oh and fortunately where the Bradleys are.

I went back to ENT this week and saw Mr A and his team. It’s different in ENT. There are a lot of deaf and hard of hearing people who pop in for hearing aid batteries. There’s a fair bit of shouting.

But away from the maelstrom I met again with Mr A and his team. Mr A examined my neck and just like a few months ago one of the team put a camera on the end of a length of cable up my nose (ouch) and poked it down into my throat. Looking at the image on the screen Mr A gave a running commentary.

He started to get all enthusiastic. He said I was recovering well from the treatment and then he said there was no sign of a tumour. The tumour had gone. In other words the treatment, with all its pain and misery, had worked. All those days of coping with the mouth pain from hell, of falling asleep and falling over had been worth it. Maybe it had even been worth doing all that listening to the Proclaimers.

The assistant pulled the cable with the camera on the end out of my nose and gave me a tissue. Mr A passed the bin over for me to dispose of it, which was nice of him. A task considerably below his payscale no doubt.

He said this would be only the first of many examinations. I wouldn’t be able to say my cancer was cured until I’d been clear for five years. The next check would be in six weeks time, and after that the checks would be spaced further and further apart.

Then the dietitian piped up and quizzed me on my eating. She wanted to know how much I was able to eat. I truthfully and not without a hint of pride said I’d moved up to cod in parsley sauce, pasta carbonara, macaroni cheese. I was expecting to move on to a Jamie Oliver fish pie very soon.

I asked the dietitian when could my RIG get taken out? She said soon but let’s get you weighed first. I sensed a conflict brewing. The dietitian was cautious while I was impatient. I said I was fed up with having a length of tubing hanging from my chest. It got in the way when I was in bed (I have to remember to keep sleeping on my back) and it got in the way when I was getting dressed. In fact it got in the way most of the time.

She banged on about the amount I was eating, how many of those replacement drinks I was having. Trying to change the subject.

She said it’ll come out soon. She would phone me. Well I’m starting to get desperate. I’ll be like Blondie, hanging on that telephone, waiting.

But of course a bit more waiting is a small price to pay. Being tumour-free even if not yet definitely cancer-free is a relief which feels like it’s been a long time coming. Though actually from the first visit to my GP to now has only been just over six months. Even if an intense six months.

I have an appointment at the Dietitian Clinic next week.

Into the third week after treatment and I’ve been beginning to see some positive signs. Slowly, gradually, I’ve begun to notice there have been changes for the better. The most noticeable one has been that my neck now looks like a normal kind of neck, even a neck with a bit of a tan. certainly not the open wound it was two weeks ago.

And my mouth, though it hurts, is definitely not quite so painful. I’m still taking a fair amount of pain relief, but I’ve put the liquid morphine away and cut back on the codeine. It’s mostly just paracetamol and brufen (liquid ibuprofen) plus the anaesthetic mouthwash.

I’ve also been getting a bit of strength back. No more falls, after the fallorama of the first week, and I’m able to transfer from chair to bed and on and off the toilet with a bit more confidence. Carers are still coming in to help morning (nice and early) and evening (usually too late) and I still need that help, but I’m beginning to think there’ll be a time pretty soon when I’ll be carer-free. I even managed to get into bed unaided last night.

So there are lots of positives. I’m  even finding I’m sleeping less during the day and am generally a bit more alert.

I went back to the radiotherapy department after three weeks, scheduled to meet with Dr B. He wasn’t there, he was off doing important consultant stuff. But his registrar (Dr C) felt I’d recovered enough to  be referred back to EN&T, who would be doing the checking to see how well the treatment had worked (physical examination and maybe scans). So an appointment there in the next few weeks.

But after the meeting with Dr C  it was off to the dietitian, who wanted to find out how much I’d been able to eat. I was able to  triumphantly declare that in addition to five or six of the lovely energy drinks a day I’d also managed some custard and small bowls of Ready Brek and chicken soup. I could tell she was impressed.

I said I’d been able to taste the chicken soup but not the Ready Brek. She said this was a sign my savoury taste buds were recovering better than my sweet ones. She also said that if I continued to up my eating then the RIG (the stomach feeding tube) might come out when I went to EN&T next. And that will be a huge relief. I’ve been constantly aware of the tube, worried I’ll accidentally pull it out, unable to sleep in any position exept on my back.

She sent me away with a ‘Soft Diet’ factsheet, which has all sorts of advice on what foods to eat and how to make them more eatable. So to start with it’s  basically stuff that’s liquidy, like rice pudding, soup, custard. Kind of where I am now. Then moving up to foods which remain a fair way beyond me at the moment, like pasta with white sauce (no tomatos with their evil fruit acid) or jacket potato. Not yet.

But I can maybe see me tackling a bit of fish in white sauce some time soon. That’s of course if I have the appetite for food, which though improved is far from where it should be.

I am getting impatient for things to return to normal. It seems to be taking a long long time, and I’ve read all sorts of horror stories of peole taking months and years to recover from radio/chemotherapy. Maybe I  haven’t quite realised how big a deal the treatment was.

I want to get back my appetite, taste, and I want to get my mouth back. I want a mouth that feels unulcerated, one that doesn’t hurt when I move food round in it, or swallow. I’m told I just have to wait, that everyone is different and recovers at a different rate and there are no set timescales they can give.

This thing has been going on for a while now though. It’s actually just a week under six months since I first went to my GP with a lumpy neck.  It’s been a long six months.

Well they said it would get worse and they were right. I’m apparently now in the grip of a post-radiotherapy flare that should last about ten days. This week has without doubt been the worst so far. Not only have I been exhausted and more asleep than awake, but also feeling really weak and struggling to get dressed, move about, do anything really.

In fact I’ve had two falls, one when moving from wheelchair to bed that left me spending an uncomfortable night on a sofa and the other when transferring from toilet to wheelchair which led to me being rescued by my carer and a team of ambulance men and women. It wasn’t as exciting as you might think, though they do wear uniforms just like the ones in Casualty.

There has been a bit of improvement over the last couple of days though. The burn scar on my neck is looking much less angry and there have been times when I’ve felt a bit more together, though it still feels like I’m having to make my way through a very thick fog.

The carers have been a huge help. They come in morning and evening now, to get me up or put me to bed. They help with a whole range of everyday tasks that you wouldn’t realise you needed assistance with until you do.

The only downside is that I’m tied to their timescale. Which has meant that I’ve had to go to bed at about 7.30 most nights. Now this has not been such a problem because I’ve been so tired that quite frankly I’ve welcomed the early night. It has though meant I’ve had to record the second Euro 2012 match.

And I’ve been a bit inundated with equipment. The NHS seem to like nothing more than letting a patient have a new piece of kit. So far I have acquired a belt with handles to help carers with transfers, a transfer board, a super-supportive wheelchair seat, a pressure-relieving mattress and a self-propelling commode.

I also of course have my Immobilisation Shield, the mould that covered my face during radiotherapy. This is sitting in the corner of the room, staring at me in a slightly scary, slightly sad way. I might end up having it put on the wall as a sort of memento mori.

There’s little sign of my appetite returning yet, so I’m still surviving on a diet of liquid ‘nutritionally complete high energy drinks’. Obviously these are not the best thing you’ll ever consume, and six of them a day can be a bit of an ordeal. But I’m persisting, waiting for my flare to come to an end.

And I’m also hoping for some taste changes. Not that I’ll develop a sudden passion for the Proclaimers, but that I’ll get my  taste buds back. How good it would be to eat and appreciate food again. But even more, how good it would be to get rid of the taste of radiotherapy in my mouth. I can best describe this as the combination of an unfamiliar metal and bad honey.