Post-radiotherapy blues

You may have realised I’ve been a bit quiet for a while.

I’ve stopped crowing about my super-smoothies and my ventures towards solid food, simply because it ain’t happening. After two doses of radiotherapy, neither of which appear to have done much except maybe stop the bleeding from my main oesophageal cancer (my back is no better at all), I have observed the relentless weight loss (over 52 lbs so far) and it took a bio-scientist friend of mine to say “You’d better get back on those Ensures or you won’t be here for long! You need the carbohydrates they offer and you need them now!”

I trust my friend, the bio-scientist. He is one of the most eminent people in his field. I also trust other views I am getting but I am in a cleft stick – if he tells me I am hastening my death by refusing easily-absorbed carbs such as are found in “Ensure” I feel I must follow his advice. He gave me a long explanation of why Ensures will keep me alive and I can see no point in throwing what little I have left away because of a somewhat academic issue. He is of the view that, whatever I do, this type of cancer is relentless. Refusing to nourish my body is really being suicidal and that I ain’t!

I have given a raw food diet every chance, to my absolute detriment, that is to say I can SEE my body deteriorating and that’s that. The speed at which the deterioration is maintained is very scary and I will take some Ensures as well as “the good stuff”.

My response is determined by my absolute inability to ingest anything other than liquid. My fantastic “smoothies” will no longer stay down as I fancy the tumour is advancing up my oesophagus, making it harder and harder.

My own advice will not be appropriate for everyone. Clearly the state of my digestive system is a bit unusual, so right now my priority is NOT TO DESTROY MY MUSCULAR SYSTEM COMPLETELY.

So today I reluctantly went on to Ensures again in the hope that it might give me a brief respite from becoming a living skeleton. What really brought it home were the family photos after my son’s wedding on Tuesday (see them at Adam and Mandy’s Wedding at http://www.flickr.com/gp/16735390@N00/054kh9 and I’m sure you’ll agree!) Watching my family and friends watching me was an education! I think it’s time for me to concentrate on building up a bit as the “good food” is not helping at all.

Any advice welcome.

Another problem is that the nature of these sickly drinks is that they come straight back up if I drink the slightest amount of fruity stuff, because they curdle into lumps which won’t go down because the aperture to my stomach is now so tiny. I crave ice cold fruity things but can’t have them without real discomfort.

I will see my oncologist next Thursday and she will offer me chemo but knows I’ll say “NO”. She may offer me a stent to allow food down but the dangers here are making the cancer bleed again and metastasize further, as well as possible rejection.

My spiritual side is being well looked after with meditation, reiki and an excellent grop of positive buddies, so do not fear for my state of mind. But, when the body is so relentlessly attacked, it’s hard to see that in a positive way without deluding oneself.

Working is tougher now but I’m still doing it as we have to pay the mortgage. After that, who knows?

My Radiotherapy Experience – Days 56-70

There has been a tiny but clear improvement in my swallowing. I am able to eat thicker liquids and, on occasion, small amounts of more solid food, chewed very thoroughly.

Last week I spoke to John Frank, (www.johnfrankonline.com) on the recommendation of a close friend. What he said surprised me and what I experienced on the phone talking to him was a bit astonishing, but immediately afterwards, on my wife’s instructions, I ate a small omelette and some mashed potato. Since then I have been experimenting with morsels of all kinds and this culminated in a trip to the Cotswolds this past weekend where I joined my wife and friends in some real food, viz. soups, a little bread and butter (minus the crust!), various ice creams (even a knickerbocker glory!), a scallop, some avocado, some melon, a whole lemon sole, a crab, a potato, a poached egg, a fried egg, a little black pudding, some porridge…

I have to say that this was all purely experimental. Eating these items resulted in some real discomfort (often for hours afterwards) and I didn’t keep it all down, exactly. But it’s a start, tempered by my over-enthusiasm which tended to make me overdo it somewhat. I know in myself that it will continue to improve. I am well aware that this period of over-indulgence was totally incorrect from the point of view of my cancer and my alkanization regime, but I just had to do this and I have done it. Now I shall return to my super-drinks but occasionally add a little something, and why not??? One has to enjoy oneself.

I also had some more radiotherapy last week for my back which had become exceedingly painful in the sacral region where the metastases are. Just one shot last Wednesday, and this would cause some side-effects of varying degrees, as everyone is different. The onset of the side-effects could be (I was told) as soon as the next day. Well, so far the pain has not got worse before getting better. There is a slight burning and dryness of the skin which I am treating with E45 cream, but no diarrhoea or bladder problems.

So far, so good, then. When in the Cotswolds (Broadway High Street) I bought a stick to help me favour my right leg, and this helps – quite easy to get the hang of, really.

My continuing objective is to gain a little weight now whilst attempting to alkanize more, so I just have to work out the right regime for each day. Because my once powerful biceps had almost disappeared I decided a couple of weeks ago to start weight training with my arms and this has met with some success. The arms are more toned now and the exercise is good anyhow. Whilst in the Cotswolds we must have walked three or four miles each day, so I feel generally more energised.

When I got back home I really expected to have lost some weight as the food I consumed was not as great in quantity as my superdrinks, and I was clearly using more calories during the break, but I was exactly the same weight as when we left.

My Radiotherapy Experience – days 40-42

Before and After

Here’s roughly where I thought I would be by now. The shamefaced little sod should be well shrunk and in terror. Perhaps it is a little easier, however, as some thick drinks aren’t giving me quite so much trouble. (Fingers crossed!)

My Radiotherapy Experience – Days 27-39

Frankly, nothing much has happened on this particular front during the last 12 days. In other words, perhaps the bleeding has diminished because my haemoglobin is up to 12.0, but my ability to swallow is either unchanged or so marginally improved I can’t tell the difference. Last night I tried 4 asparagus heads and kept them down, but only just, at the expense of soup which wouldn’t follow them down. But I like to think of those as maybe the beginning. What has changed, quite dramatically, is me – from the experience I have just had at the Penny Brohn Cancer Care Centre in Bristol. I’m so glad I went there! Read all about it (when I’ve written it!) under that subject heading. Wow.

My Radiotherapy Experience – Days 18-26

Question is – what IS going on? I am now at the point where I thought things might be a little easier, but swallowing more than liquids is still impossible. My weight is now down by more than 30 lbs from when I started and I am getting loads of advice about how Ensures are bad – one American doctor tells me the only thing they will do is KILL ME! – but if I don’t drink them there’s very little else my stomach will accept, certainly that will give me any energy at all, and with no energy I fear my resistance to everything will be low, and along with it my morale. I’m not used to feeling anything but robust – the frailty means I don’t recognise myself, and for the first time my daughter told me maybe I was starting to get depressed (ME _ DEPRESSED?!?) I had some reiki today and it was terrific, out in the sun with the birds singing in my garden.

However, there’s no doubting the fact that I’m simply waiting and hoping that the radiotherapy has done something in the way of shrinking the tumour. It just hasn’t happened – yet. It’s only five days now until I go back to Penny Brohn Cancer Care at Bristol, this time for five days. I hope I can eat something -their food is wonderful! It is now three weeks exactly since I finished the radiotherapy.

My Radiotherapy Experience – Days 11-17

Wow! Have I had radiotherapy or haven’t I? The truth is that this is very different from the last time, and no-one seems to know exactly when and how the treatment will manifest itself. Day 17 (today) is not much different from the other days – occasional vey mild nausea, occasional pain in the vicinity of the irradiated area, a distinct loss of appetite, slightly harder to swallow my “ensure” liquids, but this seems to fluctuate. When I spoke to the nurse yesterday she gave me the impression that these are “early days”, and that maybe the effects will get worse (or better) over the next two weeks or so. Really, then, I’m none the wiser, and certainly not anywhere near swallowing solid food. I have lost a bit more weight, but that’s to be expected.

My only fear is – maybe it’s achieved nothing?!? I should be a patient patient.

My Radiotherapy – Days 9 & 10

Well, yesterday seemed uneventful from a symptoms point of view, except for some dark sputum with “coffee grains”, which I suspect means the radiotherapy’s kicking in, but today? No sickness, but a definite loss of appetite and some gnawing pains soon after swallowing my liquid diet. I have some medication for this, but, even combined with a regular CoCodamol, the pain remains. But it’s bearable. See what happens tomorrow. Swallowing’s harder, but they said it would get worse before improving…

My Radiotherapy – Days 7 & 8

Day 7 Nothing really on Day 7 – maybe a twinge or two. Drove to Bristol for tomorrow’s appointment at the Penny Brohn Centre. Stayed with daughter Rachel and the grandchildren – fantastic time and managed to successfully practice telepathy with Lula (11). (See “Telepathy”) Basically, I drew an orange disk on a sheet of paper , hid it, and called her in. I then concentrated on the shape, having told her only that I would be thinking of a single shape (COULD BE ANYTHING) in a single colour, on a black background, asking her to visualise the background and wait for an image to appear in her mind. 20 seconds and then she said “An orange circle”. Impossible but true. Anyone else done this? Permutations must be endless…

Day 8 Still no real change – maybe a slightly sore throat. Went to the Penny Brohn Centre for an amazing experience (See Penny Brohn Centre)

My Radiotherapy – Day 6

Well, it’s begun. This morning I woke up with a searing pain in the location of the tumour and my first thought was – “This means YOU’RE suffering, you bastard!” That gave me a kind of victory. I also felt nauseous and wasn’t keen on devouring my precious “Ensures”, but Tracy had fixed me a mixture of organic cucumber, carrot, apple, celery, and ginger in the juicer, so I didn’t starve. Up to the Hospital, and I’m told I will be seeing one of the oncologists tomorrow, presumably as it’s my last day of treatment.

I do seem to have rather lost my appetite, which was to be expected, but I realise I need to keep my strength up. This evening I have more pain, and have taken some Sucralfate, which is supposed to relieve “soreness in swallowing”, although that’s not quite what I am experiencing. Should I take an analgesic with this drug? I phone the Hospital but there’s no-one to give me any advice. I phone my GP and he will come back to me. Then maybe I can take a painkiller. Actually, I don’t like painkillers because (a) they only mask an important message from the brain and (b) I believe taking them when not absolutely necessary tends to make them less effective over time. But serious pain increases tension, and that’s not clever, either. Tomorrow will be the last day. Hopefully, after a period when it gets worse, it should all get a little better…

Tonight I might take Mark Adams’ advice and start work on a pencil sketch of my tumour, maybe with a few shots at depicting it as it suffers and shrinks. “Flower” will appreciate that one!

My Radiotherapy – Day 5

Sunday – and a bit of a Delhi-Belly today, I’m afraid. But not much of a problem.

Been browsing a bit and have linked some new sites to my blog, and as a part of what I am learning went out to Tesco to get loads of organic stuff for juicing. Maybe the “Ensure” days are coming to an end, at least for now. I also seem to be losing my appetite a bit as forecast. Just means my dear wife has to remind me to grab a ’shake.

My Radiotherapy – Day 4

Today is a Saturday, so no trip to the Churchill. Just a lazy day working, blogging and tonight – Dr Who (already pre-recorded on Sky+)!

No side-effects yet, either. I haven’t eaten since the turn of the year, except for a kind of milkshake called “Ensure Plus”, which has all the minerals, vitamins and calories I need. Plus soup, tea, coffee, Horlicks, hot chocolate, and maybe a glass of red wine or some Scotch and water. Later when I have finished my radiotherapy and left it behind for a couple of months, I will switch to Absinthe (yes!) because it contains Wormwood, which I am told is a powerful anti-cancer agent. More tomorrow…

Starting Radiotherapy – Day 3

Not much to say on Day 3 – a different machine and different radiographers, just as lovely people. It’s a long journey from my part of Buckinghamshire to Oxford for about 4 minutes of irradiation! But it must be doing something, although no side-effects yet. The journey across country was really quite enjoyable today in the wintry sunshine that followed the thunder and hail.

 

My song for today: Amy Winehouse – Back to Black

Starting Radiotherapy – Day 2

Day 2 – woke up with no pain or discomfort – not feeling sick or particularly tired (at least no more than usual) and no feeling of burning. So far , so good. A good friend came over after I had done a couple of hours work. Long chats. Then back to the Churchill. In and out like a dose of salts. Even quicker this time, as the machine was rotated back to front by remote control. Lovely radiographers (I think I called one a nurse last time – sorry!!!) and in a flash I was back in the car on the way home. Worked all afternoon. It’s now 6pm and there is the slightest suggestion of discomfort, but it may just be wind!

Starting Radiotherapy – Day 1

I’m curious enough to record my actions and reactions as regard my five-day course of Radiotherapy at the Churchill Hospital, Oxford. When I say curious, I remember that the last time I had radiotherapy (in1982) it was similar but different, and the mists of time have so obscured it that I wish I had recorded my feelings at the time. Now I can do it, so I will. I had the previous Friday travelled to the Radiography Unit for a “Planning” session, where a nice nurse (they are all brilliant at the Churchill, with good humour – just see the notes the patients have had fixed to the wall) put me through a special scanner to “fix” the area where they would irradiate me with some kind of tiny tattoo. (I remember last time it was crosses scrawled on my torso in gentian violet!)

My first day was quite simple. I was asked to lay on a kind of narrow bed while the machine was passed over me to the precise point and focused on the tattoo on my midriff. The machine delivering the radiation was spun around me to “do” me from behind first (about 2 minutes of bleeping while the nurse left the room), then the same from above. That was it. A few minutes, and then the long drive home.

They said I might feel sick after about two hours, but this didn’t happen – everyone’s different.

Next morning I feel fine. No after-effects as yet. Will keep you posted.

On another subject, I am confused by the various views on cancer and iron supplements, so if an oncologist happens to read this, a view would be appreciated. Does supplementary iron (the cancer is bleeding and so I’m anaemic – my GP has prescribed iron in liquid form)) make tumours grow faster? There does seem to be a dichotomy of opinion on this.

My Song of the Day: Bob Dylan – To Ramona