Quack or cure?

Through our reading it had become clear that there are many alternative approaches to fighting cancer beyond those available through the National Health Service. The range of treatments is astonishing. There are various medications based on herbal ingredients, there are immunizations, there are dietary supplements, you can be baked till your temperature reaches 107F - a temperature that cancer cells cannot survive; and this is just a start.

I wanted advice about how to reduce the impact of the radio-therapy and so survive it with the minimum discomfort. I also wondered whether there were other, more appropriate approaches to my treatment. So, last Tuesday we took the last, long drive in my trusty Alfa down to Bath. We had an appointment to see a well known doctor who has specialised in cancer treatment for over twenty years. Although (as I understand) she works as a normal GP her cancer patients are all seen privately.

The hour long appointment turned out to be a sales pitch for various dietary supplements and an Indian Aryuvedic herbal concoction - all of which could have been predicted from the web-site and Internet investigations. There was some useful information;
- there is a private doctor working in Bristol who runs tests that are much more sensitive than those used by the National Health. She can identify whether there is still cancer in the body and also identify which chemo agent is most effective. Again, "cutting edge" technology, not accepted by the National Health.
- I can protect myself against the worst of the radio-therapy side effects by using Aloe-Vera cream and mouthwash and also by taking zinc tablets.
- she also questioned whether radio-therapy was necessary at this time (hence the conversation about testing) or whether it could be delayed until it was clearly necessary.

This is a ghastly field to get involved with. If I just accept the National Health approach without question I will just get on with it, grin and bear it and accept whatever comes with the treatment. Once I began to discover that there are alternatives - which appear less damaging and traumatic than what the NHS wants to throw at me, I then have to start making judgements about which I trust more (which I had more faith in!) and faith does not come easily to me. So I'm caught in a dilemma somewhere between faith and hope.
The alternatives offer far more hope. They appear less damaging and traumatic; I will emerge with a better quality of life, I won't be damaged by unnecessary treatment - all this sounds great .... but
My faith in these approaches is reserved. None of these treatments has the NHS 'seal of approval'. Some are supported by very little scientific research, testing, publication or approval. There appears to be a medical sub-culture of doctors with expertise in the field who do not have the approval of the establishment. They know each other and cross-refer their patients and claim considerable success for the treatments they support both here and abroad. They remind patients that cutting edge medical practice can take as much as twenty years to be accepted by the NHS, a fact confirmed by conversations I have had with NHS doctors.
Their time and tests do not come cheap and whilst I do not put a price on my good health I have no wish to waste money. As a result of my visit to Doctor Bath we went straight out and spent a small pile on dietary supplements that are supposed to build up my immune system, increase my cancer fighting capability and ensure I have a complete and well balanced diet. Are they going to help? Does taking them mean I can avoid being zapped by the Dalek? I don't think so!

I could go and spend a bigger pile on having a blood test to see whether I still have cancer cells in my body. If I have - well Dalek treatment is well established, provided by the NHS and has a long history of success. But what if the result is negative and shows no cancer? Is the test reliable and trustworthy? Can I safely thumb my nose at the Dalek and tell him that I prefer Doctor Who? Can I turn my back on treatment feeling secure in a belief that the cancer has been dealt with?
I'm quite sure that those who have committed themselves to conventional therapy within the NHS would advise me strongly against this and I can not avoid the suspicion that sailing too close to the wind brings one closer to the charlatans and quacks. I'm in a vulnerable place looking for the very best and least traumatic treatment. I could end up being an easy source of ready cash for someone with few scruples. I am sure such people exist - but how does one spot them. Of course it is too late now for any treatment that could have dealt with the tumor in a less dramatic way. I can live with the results of the surgery, there is little pain, I can still speak and eat but I would rather have avoided it. It's too late now to wish I'd had better or more timely advice. But I don't want to make the same mistake again and live with two sets of regrets.

So, how should I view and use the expertise of these doctors and their alternative therapies? Should I be courageous and go for the new, cutting edge therapies hoping that they work and will effect a cure. Or should I stick with the standard, tried and tested approach and put up with the unpleasant side effects? Should I put my trust and faith in these alternative practitioners or should I listen to my native cynicism and regard them through a veil of suspicion? It's a tough call and one I'm really not qualified to make. I suspect I'll just grin and bear it ... but watch this space.

Getting worse is getting better..

Now that the surgery is over it's time to think about other things.

The first is recovery from the surgeon's knife. The infection that developed in my neck has cleared up and there is almost nothing left of what was a large hole. It seems safe now to record my fears of MRSA, septicemia and other hospital acquired infections. Those worries at least, are a thing of the past. The surgery has left me now with two areas of discomfort. The worst is my right hand. A circle of flesh was removed from my inside my wrist to patch into my cheek. Half the back of my hand and the back of my thumb are now superficially numb but beneath that are a constant tingling, pins and needles and coldness. It hasn't stopped me using my hand and at times I'm hardly aware of it. On other occasions the hand doesn't even feel as though it's a part of me. Fortunately I have normal feeling in the all my fingers and the front of my thumb. Everything moves and flexes almost normally so I can do most things and hopefully as swelling and bruising to nerves wears off, my hand will feel more normal again.
The second area is my mouth. I suppose it was inevitable that this was going to feel badly mauled. Not long after the surgery my mouth felt as though it had been kicked by a horse. Now that more feeling is coming back there is an almost permanent tingling in my left cheek and lip. Not as uncomfortable as my wrist but not a normal or natural feeling. I'm also more aware of how the shape of the inside of my mouth has changed and that's a bit unnerving! In a way I've only got half a working mouth. It's almost good enough, my speech is somewhat compromised, in particular it's difficult to roll my r's. Eating is difficult but getting easier. Things like cake and bread are the hardest as they get sticky in the mouth and hard to move around. As long as mouthfuls are small I can move lumps and chew quite easily but I do bite my tongue more often that I like. Again, it's hard to tell whether this will improve and get easier or whether I'll just have to learn to live with it. I may end up having another tooth removed as I can no longer use my left canines and these are the ones that catch my tongue. At least I'm on a solid diet and we're having to puree less and less. I've been out twice now for curries and had both Chinese and Thai takeaways - that's a lot better than being attached to a drip for twenty hours a day in order to avoid malnutrition.

Looming in the future is the radio-therapy. Having just got back to some degree of normality the Dalek is likely to send me back to 'Go' again. Effectively the ray gun just burns tissue and cancer cells. Very slowly and gently but the cumulative effect will be to burn and scar my mouth just as I'm beginning to use it properly again. There may be more scarring, there may be ulceration and swallowing could become more difficult. Of course, this could be the worst case scenario and I could 'breeze' through the treatment with only mild discomfort - I hope so!! Having met the Dalek nearly two weeks ago, I'm just waiting to hear from the hospital as to when treatment may begin. Radio-therapy is a kind of non-guaranteed insurance that hopes to get rid of any rogue cancer cells that made a dash for freedom before they were cut out by the surgeon. The daft thing is that no-one can tell whether there are any just camping out any waiting to multiply madly. If there are, no-one knows how many there are or where they are. So Dalek zapping is a bit of a shot in the dark and there's no-way of telling whether it's necessary or not. The natural consequence of this is that there is no way of telling whether the zapping has been effective or even done any good at all. I just have to wait and see whether anything else develops in the future. At least, that's what the mainstream docs seem to be telling us.
Once again, to get a different view you have to go outside the National Health so the next exciting entry will tell you about our visit to Bath.

Hard Graft

To the tune of 'Dem bones'.

Well the cheek flap's connected to the wrist graft,

And the wrist graft's connected to the tummy tuck,

And that's the way of the cure."


A week after being released for hospital I went back to have the dressing removed from my wrist graft. Again it was held in place by metal staples and a scar went all the way up my arm to the inside of my elbow where some artery had been removed. Slowly the bandage, the padding and then the foam 'pressure dressing' were removed. The graft had not been looked at for more than three weeks as it needed constant pressure to ensure that it took and that new blood vessels grew into it so that it would become part of my arm rather than just a surface dressing. The medical staff were delighted when finally they saw what had been hidden. The graft was perfect, it had taken all round without any patches of weakness. In fact it was so good that they wanted to take photos of it to be used for educational purposes. Unsurprisingly in this day and age, I had to sign a release form to give my permission and to forgo any royalties. I was still not allowed to flex or bend it, not to carry anything heavy nor drive. I had a lighter dressing put on just to act as a reminder that it was still not right.


Two days later I was back in hospital again. The community nurse had expressed a little concern about one of the wounds in my neck. It was a bit red and a bit swollen so she suggested that I should go back to see the doctors in hospital. One phone call and two hours later I was back in the consulting rooms having needles stuck in my neck, samples of fluid extracted for analysis and prescriptions written for antibiotics. Satisfied that everything was now under control, I was sent home to continue recovery and self-medicate.

The following morning Elaine was even more concerned. My neck was more swollen and tight. Even so I did not feel ill nor have any sign of a temperature but when the nurse came she was sufficiently concerned to suggest that I should go back to the hospital again. So, on Friday afternoon I was back in the consulting rooms again with the doctor muttering that my neck did not look too good. He peeled back the dressing and we all got the shock of our lives when a considerable amount of fluid that looked like cream of tomato soup but smelt of dog-shit, came gushing out. I didn't look to see how much but I did feel the doc get two fingers into the hole to scoop out any remaining gunk.

"You'll have to stay in," he said and so my second weekend in hospital began. I was on I.V. drips of antibiotics three times a day in another single room. Unfortunately the entire communication/entertainment unit was not working so I had no TV, no Internet, no games and only my own transistor radio for company. I did a lot of reading!! By Monday the wound was beginning to heal and the infection was under control so I was allowed out but under instructions not to drive and still to avoid any heavy lifting. At least the Rugby world cup was about to start and the seven one day games against India were underway. There was something to focus on and think about.

The next day, Tuesday, was the second training day for those who were returning to teaching this year. It was held at school. Around lunch-time Elaine chauffeured me to Droitwich and we called in to see friends and colleagues. We had a good time catching up, enquiring about peoples' holidays and catching up on news. It was good to be able to show friends that I was well and recovering and still the same old person they had known just a few weeks before. We talked and talked and talked and instead of staying for the half-hour planned we were there for two hours at least. The rest of the week went in a daze of listening to cricket, seeing the district nurse, taking antibiotics and falling asleep. By Saturday night we were both so tired that we went out to get a take-away, my first non home-cooked food. A local pub has recently opened a Thai restaurant - just a five minute drive away. I managed to eat it although I was slow but the Yellow Thai Chicken Curry with Vegetable Fried Rice was excellent. I was not allowed wine as I was still on antibiotics but even so, this was a big treat.

The following Tuesday and we were back at the hospital again, this time for an appointment. The dressing was removed from my wrist graft and not replaced. There are still dozens of stitches in it but I am told that they are self dissolving and will come out by themselves in time. I had two stitches removed from the front of my lip - these were catching on food, towels and tissues when I wiped my mouth and so were a bit uncomfortable. The docs said I was OK to drive; I met the speech therapist who said I was making wonderful progress and really had no need of her expertise; the nutritionalist came and made new arrangements regarding my liquid diet and then it was a question of waiting to meet the Dalek from Cheltenham.

After another long wait he came rolling in and told us what he felt he needed to do. As expected, he would zap my cheek and the left side of my neck hoping to exterminate any nasty little cancer cells that had escaped the lymph nodes and were now just waiting to reproduce like rabbits in my neck. Just to be sure he was also going to zap the right had side of my neck as well. It would take five weeks or twenty-five sessions. The first two weeks would be fine, the third week will start getting uncomfortable, the fourth and fifth weeks are likely to be unpleasant with sore (burnt) throat, ulcers in the mouth, a swollen tongue and 'sun'burnt cheeks. My 'olive' skin may offer some protection against the burning but no-body can say how any individual will react. Analgesia will be available as well as creams to help the skin recover. When it's all over I will probably not grow a beard in the radiated areas although I will need to shave the rest, the treated area will remain photo-sensitive and so I'll have to slap on sunblock before going out on sunny, summer days and my jaw bone and skin will find it harder to heal after any injury - I'll have to be careful. Elaine has done some Internet research about getting through this as easily as possible and next Tuesday we're off to Bath to see a complimentary doctor who specialises in cancer. I hope she may be able to suggest ways both to deal with the radiotherapy but also to approach life after treatment to ensure the minimum chance of the cancer returning. The fact that she is also a GP gives me some confidence that this is more that just blatant quackery.

Just as we were about to leave I asked again about exercises to help open my mouth wider. The exercise kit ordered had still not arrived so in best Professor Branestawm manner the butcher asked for a box of wooden 'Tongue Depressants". He took out eight and, having asked me to open my mouth, slid them (just) between my teeth. Then another one was taken from the box and it was inserted in the middle of the first eight and slid in stretching my gape just a little more. "Do this three times a day and keep them in place for thirty seconds," I was told. So this looks like a new exercise regime for the foreseeable future. I suppose I will stop when I can bite an apple or take a mouthful of melon but I expect it will be a long, slow process.

Two hours later we finally got out of the hospital and I drove. Before I went in we were looking at changing the car and so we now picked up where we left off. We'd been looking at a Kia Sportage small 4x4. The only other vehicle in the frame was a Honda CRv. These two are very similar in many ways. From appearance to equipment, size, tax, performance, emissions and more they almost like non-identical twins. Ultimately we went back to our first criteria - comfort. The Honda shaded it on this as it did, just, on noise levels. I had also read one comment on the Internet that claimed that Kia owners reported a number of worries regarding the transmission and air-conditioning. So we negotiated £800 off the windscreen price of a Honda and got a reasonable trade-in on my Alfa 145. So my recovery is benefiting from a little bit of retail therapy, our budget will benefit from lower fuel and road tax costs and next Thursday we'll be the happy owners of a new vehicle.

Today is the birthday of one of our closest friends. As we often did 'pre-cancer' we'll meet up this evening at a local Indian restaurant for a curry - my first meal out since hospital. I hope I'll manage and enjoy it even if, as I expect, I'll be a bit slow on the eating.

Well, that's it for now. It's taken me a long time to get round to recording this. I've either been in the garden or test-driving cars, watching rugby, cricket or football or falling asleep. But now, in GWB's famous words, "Job Done". There will be more to add so watch this space but don't hold you breath.

Ron