Recovery Continues

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.

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Then Some Good News

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.

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Recovering From Treatment

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.

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First Week After Treatment

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.

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Sixth Week Of Treatment

Radiotherapy sessions are properly called fractions. My thirtieth and last fraction was on Friday. It had been a long time coming, but at last there it was, the day the music finally died. No more Proclaimers or Showaddywaddy or Take That.

But music aside, the experience has been hard going. The overriding memories will be of discomfort, pain, nausea and unfailing fatigue. The fatigue has got worse as time has gone on, to the extent that now on the day after the last treatment I find myself having the duvet day of days, slapping myself awake between keystrokes as I try to remember the events of last week.

Mostly things went smoothly, although not for the first time there was a problem with hospital transport. And more particularly with their Norwich-based regional co-ordination centre.  This time, when an ambulance failed to collect me I was told they had no record of a booking. Even though I had phoned them to confirm said booking (being naturally suspicious of the situation) only three days earlier. Thankfully a relief ambulance was diverted via Belstead.

And then I found myself feeling light-headed on the hoist one day. Now this could have been fatigue, dehydration, MS-related vertigo, even the effects of the Norwich incident. But I was sent immediately for a blood test, which showed my white blood cell count was low. Could be the after-effects of chemo, which thankfully I’ve now seen the back of.

In fact chemo seems like a world away now. In time I expect the discomfort, pain and nausea I’ve experienced will seem the same. They have all been alleviated by drugs and I’m thankful to be living at a time when there is so much helpful pharmaceutical stuff around. I have a reasonably well-stocked cabinet full of paracetamol (soluble and capsule), ibuprofen, codeine phosphate and lidocaine hydrochloride (an anaesthetic mouthwash). Other mouthwashes include an anti-plaque mouthrinse, Muguard to combat mucositis, and the old favourite, which remains a timeless classic, salt and water. For nausea I have the anti-emetic drugs metoclopramide and ondansetron. Both of these are very effective but have an unfortunate constipatory side effect. So it’s a balance – constipation in one hand, vomit in the other.

Then for the pain in my neck, which has become the outstanding feature of the last ten days I have a couple of gels. Something called QV cream which is just a run of the mill kind of moisturiser, and the rather harder core Intrasite gel which has to be slapped on the raw bits.

Because my neck has got well and truly raw. I’d put a picture up but it would need a health  warning. My neck is a ghastly site. In places there is flaky skin, in others there are exposed, red, even bleeding patches. Think of those wartime pictures of nuclear bomb victims and you wouldn’t be far off.

And without the Intrasite gel it really hurts. It stings like the stingiest thing you can imagine.

But at least, you’d think, the treatment is over. I’ll start to recover, right? Well actually, not just yet. The affects of radiotherapy contnue to build for a week to ten days, so I can expect things to continue to get worse for a while yet. But all I  have to do is keep applying the creams and gels, keep taking the painkillers, keep swishing the mouthwashes around for a while longer. And then at least the pain will begin to subside.

I met with Dr B on Friday. He examined me and said once again he was pleased with the way things had gone. He wants me to go to the ENT clinic in three weeks time to meet with him and Mr A (remember him?) to review progress. If things looked ok, and he said there was no reason to think they wouldn’t, they would then carry on having regular reviews at regular intervals until in maybe eighteen months time he’d be confident in saying I was cancer free.

I asked him what if things didn’t look ok in three weeks time and he said well then we’d have a problem. But he said it in a ‘that’s not going to happen’ kind of tone which was kind of reassuring.

So I now have three weeks of not having to go to the hospital. I can try to get my white blood cell count up, recover, think about maybe having my RIG removed and eating something. The dietitian said don’t expect either of those to happen just yet though.

Oh and I might listen to some proper music.

 

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Fifth Week Of Treatment

Some people with MS really like hot and humid weather. For them, the more sticky and sultry the conditions the better. But I’m not one of those people. The more hot and humid it is, the worse I am. Now you might say oh everyone feels like that and to an extent you’d be right.

But with MS, most people with MS, it really is seismically different. Imagine you’re wearing a thick rubber suit, maybe the most hideous gimp suit you can think of, and you’re trying to lift an arm, or a leg. You struggle, and you slowly do it, then you struggle again.The whole thing is tiring and a strain you eventually have to just give up on. The weather can be utterly draining and leaves you just feeling weak and unable to do much at all.

And in the heat this week, combined with the effects of over a month of treatment, it started to get a bit too much for me. These were what you might call the hard yards. Now I’ve run marathons, I know how tough it can get, and this felt like mile twenty-two when all of a sudden you hit the wall and your legs don’t work right and you realise you’re dehydrated and bang things are starting to fall apart.

So on Monday I had my bang moment and found myself sitting in the Day Centre with Dr B and his registrar and a nurse and we agreed (probably I was told but to be fair I genuinely did feel included and agreeing) to stop the chemo as the side-effects were just making things worse.

Unfortunately, by this time I’d already had blood taken for a pre-chemo test, and had five plasters scattered over my hands and arms. No change there.

Radiotherapy continues relentlessly on, and my neck is becoming increasingly flaky, red and inflamed. I’m beginning to look more and more like a Hiroshima victim, and of course Hiroshima was the scene of similar if cruder and more forceful technology than I’m being subjected to.

I’ve been given a more heavy duty cream to aply to my neck, and told that if the skin continues to decay it might be necessary to wear an attractive gauze bandage.

This would be changed by the District Nurses, who continue to visit me daily to flush my stomach feeding tube through with water (via a big old syringe) and generally check on how I am.

My other daily visitor is now a carer from the Council who helps me to get dressed, fed and medicated. This kind of support has been so useful over the last week or so as things have got rougher. I’m normally the type of person who is likely to get called ‘fiercely independent’ but some times you just have to know when to give in a bit. And this is definitely one of those times.

Music-wise this week there was more Take That and a little bit of light indie pop. Though one of the radiologists has declared a liking for thrash metal, so I’m expecting a drop of Anthrax next week.

I’m still managing to avoid using the feeding tube, though I’m now consuming almost entirely liquid food. I have a line of ‘milk shake style high energy drinks’ which come in a range of flavours (none of which I can really taste) including tropical fruit, strawberry, cappucchino and vanilla. I’m supposed to drink up to six of these a day, which is more of an ordeal than you might think.

At my end of the week meeting with Dr B he suggested a final chemo session next week, if I’m feeling strong enough. Well I’m not sure I do at the moment, though perhaps two days of watching Royals get wet will perk me up.

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Fourth Week Of Treatment

I’m beginning to think I’ll soon be able to at least look up at the parapet, if not over it. Two weeks to go and those two weeks still seem like an awfully long time but there’s no mistaking there’s now an end on the horizon.

The ace nurse has moved on to pastures new, but her replacement got the canula in in two so all was far from lost. Actually quite a jolly atmosphere in the Day Centre this week. Not exactly throwing paper streamers and letting off party poppers, but the mood seemed almost light-hearted.

No one ever minds giving their story here, we’re all in that same boat/river and we all have a tale to tell. Mostly it’s about numbers, so it’s how many chemos have you had? How many radios have you got left? And then if someone’s been unlucky it might get on to how many times has it come back? And where?

In the radiotherapy waiting area there’s a lot of chat, and often it seems a preponderance of chatty men who have prostate cancer. Now if you have prostate cancer and are having radiotherapy you have to drink a lot of water. The purpose of this is to move your bladder so it doesn’t get x-rayed. Fair enough. But having a full bladder is not an ideal state of affairs for someone with a dodgy prostate. The chatty men seem to chat most about the location of the toilet. But they also say how important it is to get to the GP early if you start to have symptoms. I’ve met one or two who regret not going early enough.

But talking of radiotherapy, the soundtrack shows no sign of improvement. Highlights this week were Take That, George Michael and those old radio favourites,The Proclaimers. Walking 500 miles never seemed so far or so hard.

This was made worse by the machine breaking down mid-cycle with me on it. So I found myself lying there immobile, my mask firmly in place, while the invisible team of back room tech guys press whatever buttons they press to make the thing work properly.

After suffering rather more of George’s easy listening album than I would have wanted, the tech guys finally found a way to turn it off and on again (the machine not George) and it burst into life. I emerged relatively unscathed, though unsure if I was ever gonna dance again.

Aside from the severe fatigue, my worst symptoms have been mouth-related. I have all sorts of analgesics and mouthwashes to relieve pain and discomfort, but eating is becoming a problem. I can swallow, well certainly liquids are ok, though solids are trickier.  The dieticians are beginning to get concerned about my weight and have increased the liquid feed they prescribe for me.

The liquid feeds are, to misquote from Star Trek one more time, ‘nourishment, but not as we know it’. They look like an appetising fruit drink, as far as I can tell they taste a teeny bit like one too, but actually they are a fabrication, a mishmash of protein and vitamin and mineral and who knows what else. No self-respecting appetising fruit drink would be seen anywhere near it.

I haven’t used the RIG (stomach feeding tube) yet, though the nurses and I did have a dry run with the contraption that attaches and feeds through the night. It’s all fairly ghastly and to be honest I’m hoping I don’t ever have to use it. I can see myself lying next to it while it ticks away, slowly delivering its insomnia-inducing gloop into my guts.

But on Friday, some good news. At a review meeting Dr B examined me and said he was really pleased with the way things were going, that progress was exactly as he had hoped. And expected.

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