Touch of Cancer, Jean Charity [most inspirational books txt] 📗

simply can’t bear the thought of a possible parting which will be heartbreaking for them. They can’t bear to watch someone they love so much going through a kind of hell they are powerless to alleviate. They would rather disappear, keeping their memories of that person unsullied and as they were.
It must be wonderful to have close family around at this time with all their love and support and understanding; but at the same time it must add to one’s concerns.
Do I protect the family a little or do I let them see how I’m really feeling today?’ ‘Do I try and make light of it all and bury my frustrations or do I snap at them when I’m under stress?’ It is such a hard situation for families to face. If we open up to it there is a kind of peace in this for us; but our families cannot know that peace. Only fear, heartbreak and concern. I have watched loved ones die with cancer and I would, every time, choose having the disease myself rather than watching someone I love go through it. Whilst our families have the frustration of being unable to take it all away and make it better; we have the added frustration of witnessing their pain, no matter how hard they try to hide it from us.
None of this is easy for us, but I truly believe it is much harder for our loved ones.


2


DRUGS AND DECISIONS





With regard to the treatment offered I put my faith totally in my Oncologist, mainly because I had little choice in the matter, and when he suggested using, in conjunction with my chemotherapy, a new as-yet-untried-here drug, I willingly agreed. The words ‘guinea-pig’ infiltrated vaguely into the murky recesses of my mind, but these were roughly pushed aside by the memory of what my mother would say to me when I was being particularly obstinate and stubborn: ‘Take what you are given and do as you are told’. My mother has been dead almost 50 years now, but I still find myself adhering to many of her standards and values.
The new drug, Mabthera (Rituximab) was at that time only possibly effective with my particular form of cancer, although the researchers were endeavouring to develop it to treat other forms. I have no idea whether they have as yet succeeded. Before embarking upon it, however, it was necessary to undergo various cardiological tests, all of which proved positive. I was to remain in the hospital after my first batch of chemo. in order to receive the Mabthera the following day; the initial dose of which had the effect of blocking my airways and throat and turning my face to a colourful purple hue (according to the audience its administration had attracted) and leaving me talking in an exceedingly high-pitched helium-balloon-type voice. I do talk a lot. This is a common trait amongst Aquarians I’m told, and apparently I even talk in my sleep and whilst under the influence of anaesthetic! The forms I had to sign
immediately prior to my taking the Mabthera each month, releasing the hospital from any responsibility should I die during or after its infusion, left me somewhat short of confidence, and as I signed my life away with bold flourish indicative of a courage I was far from feeling, I realised that I had little choice in the matter. The alternative seemed a non-win situation, and I now know that without this combination of treatment my chances of survival thus far would have been minimal

However, with remission came choices. Four to be precise:

1. I could keep taking the Mabthera but only every six months
2. I could take yet another drug, Interferon, three times a week (more commonly used for multiple sclerosis and leukaemia)
3. I could take both of the above drugs
4. I could take none of them.

The 4th option appealed to me most, especially when informed that I would be expected to continue with these drugs (or drug) for the next five years; but I went home to consider my options and make out a list of pertinent questions. That done, and unceremoniously dragging my
Surgeon with me to translate, I returned to see my specialist. I had decided I preferred to remain drug-free, and enjoy a better quality of life for whatever time I had left, than to pump myself full of debilitating toxins in an endeavour to prolong that time. I would probably take a gin and tonic too many one night anyway and be ‘scuttled’ way before the five years were up. I would take my chances.
It hadn’t been an easy decision to make; and once all my questions were answered I had a change of mind and did a complete turnabout. I would take both drugs.
How foolish would I be to turn down the chance of a possible extension of time? I thought of two friends who had recently died from cancer and asked myself what would they not have given for this opportunity? A possible life-line was being offered to me – how foolish would I be to refuse it?
I gave my Oncologist my decision and then nearly had apoplexy. I would continue to be hospitalised for the Mabthera, but he had taken out of his drawer a pen-type syringe used to administer the Interferon and told me I was to inject myself every Monday, Wednesday and Friday in my tummy. My sudden lack of control must have taken him aback as I screamed at him: ‘I CAN’T. I HATE needles. I CAN’T inject myself’. His assurances that I would soon become used to it did little to assuage my fears.
Nothing in connection with my illness (not even the initial diagnosis which I think I was perhaps expecting) had fazed-me-out like this. I am scared of needles. Having others continually pushing them into me is a necessary evil, but having to do it to myself was unthinkable. For the next few days the prospect dominated my mind and every time I thought about it I felt sick. I would tell myself that millions of people had to inject themselves every day; but this didn’t help. I was scared, and the sick feeling remained. Finally I decided I could take the tension no longer and it was ‘now or never’. Before going to bed that night, as instructed I took the drug out of the fridge for half an hour to let it warm up, mixed my soluble pain-killer, and put my sleeper on the side. My instructions had been to inject, take the pain-killer followed by the sleeper and go straight to bed. I was shaking. I knew I was being terribly cowardly, but although I tried to watch the television whilst I waited for the half hour to be up, my eye kept being drawn to the menacing object lying on my coffee table. I would look at it and once assured it wasn’t about to pounce on me, quickly look away again. Then my eye would be drawn back to it.
Eventually the half hour was up. I steeled myself whilst I went through the brief preparations necessary and, with eyes half closed so as not to see too much, I blanked my mind and did my first self-injection. There was nothing to it! I still can’t bear to watch anyone sticking a needle into my flesh, but somehow doing it myself (and the needle is very fine and tiny) was no problem. The relief was intense.
So intense, in fact, that I burst into tears and had a good cry.
And so the thing I had most dreaded turned out to be no problem at all.
The other experience which left me somewhat reeling was my second bone marrow extract. The first wasn’t too bad, uncomfortable rather than painful, and I likened the experience to having a sack of potatoes pulled up my back in steps, not that I have actually had that pleasure.
But the second was pure agony and I am very positively not looking forward to the next one; which I know is awaiting me at some stage. I shall just have to determine to grip the rail; grit my teeth; curl up my toes; and think of England as I try to force myself not to betray that stiff-upper-lip syndrome of which we English are so justifiably and inordinately proud. At least that’s what I hope I shall do! I must bear in mind the fact that it’s all for my benefit and when it is over I shall be released, unlike so many hostages and POWs who suffered so much worse.
We each have to make our own decisions with regard to the extent to which we are prepared to go in bombarding our bodies and permitting experimental treatments. It is our body; it is our life for which we are fighting. Some of the choices we have to make are far from easy, but ultimately they too must be ours.
It is very important that we be allowed to deal with our condition in our own individual way – whatever way that is, and not in the way others may wish for us. And this is our right. To do it our way.


3


ANTI-SOCIAL ISSUES





DIARRHOEA

From the initial onset of this totally unsociable condition through Salmonella picked up, and subsequent drugs resulting in a torn inner bowel, this is now a legacy with which I have been permanently bestowed, coming as it does without warning.
At first it caused me untold embarrassment to the extent I suggested my Surgeon wear his raincoat and wellies when examining me; and trying on one occasion to clean the hospital bathroom walls and floor with toilet paper. I didn’t want the nurses to witness my ‘shame’. It has tempered somewhat since then with prescribed tablets and two natural yoghurts per day, but can still catch me off-guard, as was the case when a visitor left my apartment just in the nick of time before I had to strip down and discard all my clothes. The visitor was not only a friend but also had clairvoyant abilities and I wondered if his sudden, perfectly timed, exit was due to his having privileged information.
My most recent incident, however, wasn’t such a lucky one. It struck whilst I was walking from the hospital after my TAC (CAT in UK) along one of Palma’s main shopping streets. By the time I got to a loo I felt very unsavoury and convinced that the whole of Mallorca knew
of my plight. It didn’t exactly help, either, when the driver of my taxi home wound down all the windows on such a cold day. That really upset me, but it was an extreme case, and normally it just leaks slowly after I have left the house feeling all lovely and fresh from my bath or shower. There is nothing one can do in these circumstances (short of always carrying a bag of fresh clothes and wipes around) except keep one’s head high and try to pretend it isn’t happening, until in a position to do something about it. For me, Bridget Jones’ type underwear has long-since replaced the lovely silk cami-knicks I used to wear; but it does cause anxiety when being pressed to socialise
‘Dare I, daren’t I?’ The answer usually lies in the close proximity or
otherwise of a nice lavatory.
It is a very undignified problem and, I feel, more distressing perhaps to the more-sensitive female sex; but to get it into perspective, it is a small, albeit