This Cure is Killing me!

Hello Friends: I have to tell you that this last month has been the worst of the entire illness and probably of my life! The inflammation problem that I wrote about in the last entry got worse and worse until, a week or so before Christmas it had become virtually impossible to swallow anything. Eventually, after quite a lot of pressing, I had to go back into hospital to have a peg feeding tube fitted.

To do this they slip a little camera down the throat and into the stomach. The camera has a light on which can be seen from outside and a hole is punched (under local anaesthetic) through the stomach, a tube inserted and a clip fixed inside to stop the tube coming out. The tube is used for squeezing food and fluids through and at least keeps you healthy whilst swallowing is impossible. That was the theory. The reality was that my throat was so constricted that the surgeon could not even get the paediatric size camera down my throat, so they sent me home for the weekend. There were two other options. The first, and preferable, was to perform a minor surgical procedure and insert the peg tube from the outside and stitch it in place rather than clip from inside. The problem was finding a theatre slot, a surgeon and getting it done before Christmas. They couldn't so they went to plan C. Plan C uses an older technique of pushing a very narrow tube up the nose, down the throat and into the stomach. This then works in the same way as the peg but rather more uncomfortably as there is a permanent tube up the nose and down the throat. This causes almost constant saliva production and so I am constantly have to cough up and spit out saliva - a process which I'm sure my friends, family and visitors find distressing.

We are pushing hard to move on to the peg and I'm hoping to go back into hospital soon to have this put in the the tube taken out of my nose. I will feel much better about life when I don't have to walk around looking like some bizarre character out of a Startrek movie and feeling as though I've got a permanent restriction in my throat. With a great deal of luck the swelling will have begun to die down and I'll be able to eat,drink and swallow again.

We went to see the doctor in the hospital a couple of days ago. He was reasonably encouraging. They have seen the results of PDT before and know that inflammation, especially on top of surgery and radiation scarring, can take a long time to calm down. I'm taking big doses of steroids to try and get the swelling under control but there's little sign that this is working other than, perhaps, to keep the swelling in check. The one encouragement is that if all this swelling is due to the cancer cells being killed off, and that was the intention, then there's a lot of cancer cell death going on.

But in the meantime I have to sit still five times a day while Elaine uses syringes and mixtures and bottles and dishes to squirt potions, solutions and medications up my nose and down into my stomach. It's uncomfortable for her and depressing for me. Let's hope we can move on soon.

I don't want everything to sound glum and negative so I will move on. The NHS has been pretty supportive over all of this. I suppose they come into their own when one is really ill rather than just suffering from a cold or a broken finger. We've had a lot of support from the district nurses, the hospital staff, the hospice staff, the GP the nutitionalists and many others who have expressed and care and concern in different ways. Their help and support has been encouraging and occasionally productive and we are using whoever we can to speed up the process of getting the peg put in.

Apart from that we have determined that our lives will go on as normally as possible and that has included all those post retirement plans for house and home that have evolved over the last few years. So the kitchen is having a mini re-vamp. Having replaced the dishwasher, hob and oven we are now waiting for new work surfaces to be fitted. We have gone for an unusual solution. It's a kind of reconstituted granite veneer which is stuck over the existing surfaces. As it's only thin there is no weight problem and the existing kitchen does not have to be ripped apart. The whole fitting can be done in a day and we're hoping that it will be done any day now. At the same time we'll have a new sink and tap as Elaine has never liked the resin sink that was originally installed as it always stained so easily.
Meanwhile I've been re-fitting and re-arranging our utility room. This has been necessary for a couple of years - since we had the conservatory fitted in fact. So far it's gone well and I managed to find a small drainer sink that just fits the space available - so if anyone wants a single, stainless steel sink with double drainer and taps just let me know before they end up at the recycling centre. We're going to replace our venerable washing machine as well. Our existing Blomberg was the Which Best Buy 21 years ago, has proved to be exactly that. It's had a few minor problems but nothing that a local repair man couldn't sort out for us. It's been efficient and reliable since we first had the extension built. Don't go for Blomberg today - it's a very different make as we discovered when we bought a Blomberg dishwasher from Currys' (their own brand as we were told) - it was of much poorer quality.

We've also bought a new telly, gone SKY (which I swore I never would). I began thinking that if I was going to be more ill I'd be likely to be spending time at home and that I'd want to be able to distract myself watching the live Rugby Union and Test Cricket. Even more amazingly we've bought a games console. Now I never was a computer games player but we bought a Wii and although playing tennis and golf and bowling on it is pretty easy it does give more of a physical workout than sitting on the sofa - the tennis in particular is quite demanding! Elaine want's to add to the interactive nature by getting a Wii fit board to help us exercise and keep fit. The only problem is that there don't appear to be any available in the country! Does anyone have any experience of this kit? The reviews on Amazon make it sound astonishing!

Well, that's where we are now. I'm either getting better or not. I'm certainly suffering at the moment but am hoping and hoping that, for the time being at least things are going to get easier and, who knows, perhaps recovering. I'll let you know. In the meantime, if anyone wants to visit you'll be welcome. I get quite tired so don't plan on staying too long but there will always be a cuppa and hopefully some nibbles. Talking is a bit difficult still, especially with this tube down my throat so come and entertain me! I'll join in as best I can.

Hope you all had a great Christmas and let us wish you all the very best for the New Year.

Ron and Elaine.