more of the same

I am back in the chemo treatment room at the Norfolk & Norwich for my three weekly 'hit' of prescribed & potent poisons.

It's quite clear to me that with other illness the medicine makes you better, but with cancer the medicine just makes you worse, and in my case as sick as parrots, although I've never known why parrots particularly are meant to be sick.

I saw the oncologist yet again last week, and in view of all the sickness and weight loss he has reduced the dosage of irotenican by 25%, and has cancelled the two intervening weeks when they give me only fluororacil. So I come every third week now, when the dosage has been lowered.

He says there is still only a one in two chance that this treatment will work on my deep rooted tumours. Apparently the chemo drugs needs a good blood supply to reach the affected areas, but apparently this is not the case to the lining of the abdomen, which is one of the places where I have tumours, the others being the bowel (intestine) and lungs.

I will be having another scan in July, when they should be able to tell if the treatment is working or not. If not, then other than put me back on the fearsome oxaliplaten, which made me dangerously, ie life threateningly, ill in January, there is little else he can do for me.

Cancer research is making great strides forward, especially with regard to the new genetic drugs that neutralise the cancer cells rather than try to kill them off. So there are some exciting new treatments coming forward, but sadly it seems that these will not be available for several years yet to come. So it's unlikely that I will be able to benefit from these.

So, needs must, I have to do my best to cope with the adverse side effects, and all the unpleasantness, and so give this aggressive treatment a chance to work.

once more unto....

After a four week break I am back on the chemotherapy train at the Norfolk and Norwich in the Weybourne Unit - so named after a village in North Norfolk. I am starting a new six month treatment.

In the meantime we have spent two wonderful weeks on the Scottish west coast islands. I'm hoping not, but should the treatment get tough going again, I will at least have some wonderful remote and beautiful places for my mind to escape to!

I am now on a drug cocktail of three, including AVASTIN, which is a genetic drug rather than a chemo drug. It is intended to attack the genetic structure of the cancerous cells, and hopefully 'cap' them off so they can no longer incessantly reproduce themselves, rather than to kill them off altogether, which is the purpose of the chemo drugs.

My main chemo drug this time is IRINOTECAN, and then finally there is 5FU which I was on before. Every three weeks I have all three of them and for the intervening two weeks I get only the 5FU which previously I have managed to assimilate without any seriously adverse side effects.

The irinotacen increases the production of saliva and mucous in various parts of my anatomy for a day or two. They have given me an injection that stung rather to counterbalance this effect. However my nose is now running as a result, and, worse, there have also been some fairly acute stomach cramps which double me up every twenty minutes or so. I hope they won't last long.

This extended procedure, which happily will be every three weeks only, has lasted about three hours. Whilst they drip the drugs into me, Lynne and I sit in a large room where the nurses are treating up to twelve or so patients at a time. We read the papers and do the crosswords. I listen to my Zune mp3 player, and then look away every time they come at me with another needle! I've never been very good with needles, but lately, since all this started, they have been sticking them into me so often, that I am getting better able to stifle the distress.

Lynne is being brilliant with all this. It's just the steady way she comes with me every time, and sits out all this unpleasantness without fail, and without any whisper of her being there under obligation. With her calm and cheerful presence she gives me a deal of reassurance. Because I need to stay strong myself, I won't say that I couldn't actually do it without her, but what a dear person she has been to me!

God knows I wouldn't wish any, let all alone all of this dire situation on our worst enemies. Lynne's loyalty and devotion in the face of such adversity has been a pure joy to me in what has become an imperfect existence. I surely couldn't ask for a better companion.

So, anyway the kindly nurses are all done with me. I've been given a veritable arsenal of immodium pills, sick pills, streroid pills and antibiotics to counter any more adverse side effects as they kick in. Fingers crossed I won't need them! But if I do then let's hope that I won't then need yet more pills to offset the side effects of the side effect pills....If you see what I mean!

carry on regardless

Well I saw the oncologist on Wednesday, and he - Dr Biswas - says that the ct scan results are inconclusive, but that he feels that the 5FU or fluorouracil treatment is not working as well as he wants. Even though I am feeling absolutely fine at present he has persuaded me that it would be for the best if I were to come off this drug and to start me on a new cocktail of three. Reluctantly I have agreed. I was tolerating the 5FU so well, and have been feeling fit, regaining my weight and strength and generally was in the pink.

So at short notice we have been given three weeks chemo holiday. Next week there is family business to attend to. Then, as Lynne has managed to arrange a couple of weeks off work at short notice, we head for the Scottish islands on Saturday May 5th, via Aberdeen to see Lynne's brother and his family.

Upon my return I will be climbing back on the chemo bandwagon and onto my cocktail of three:- Irinotecan, also called Campto, Avastin, and more 5FU. The combination will be more potent, but I can expect my hair to fall out. It will also make me tired.

Lynne and I are being philosophical, on the basis that if at first you don't succeed then of course try again. Dr Bis says there are one or two other tricks up his sleeve if this doesn't work.So there are reasons to be cheerful.

We do enjoy each and every day together, and there will undoubtedly be many many more moments of joy and contentment ahead for us. I am as happy as I have ever been, and I take great pleasure in my family and friends and in everything that life has to offer. Like Iris Murdoch I have come to believe that “One of the secrets of a happy life is continuous small treats.” For example we did the three tiered plate at the Assembly House this afternoon. Sandwiches, scones and cakes all washed down by three cups of the hot and freshening. Delicious!

I pray and hope that I will continue to find the strength to carry on regardless of this (ultimately) life-blighting illness. When we talk longevity, I want my -evity to be as long as the road from here to the back of beyond!

i feel fine

the good news is that i am still feeling very well at present, and continue to cope ok with the chemo....of course there are moments and days when i have a wobble - in terms of both health and emotions - but by and large i'm doing much better than we expected....i have learnt not to rest up, but to try and keep going both on the chemo day (thursday) and also on the day after the chemo day, as the sickness and tiredness seems to bother me less if i am otherwise occupied....i do suspect though that by the end if it all i am going to be sick and tired of being sick and tired.....(a joke in the best possible taste....no? oh well never mind then....!)....work is still a pleasure and i like still being able to get out and about and feel useful....the income is always welcome too....have ended up buying a lot of new clothes to accommodate my slimline new self....i was entirely fed up of everything being so baggy and collars with four inches to spare....we enjoy our leisure and seeing all our friends and the family....we are loving having the city on our doorstep for a change and all there is on offer....i like walking in the countryside and always enjoy the wildlife...i have treated myself to a new camera with a good zoom lens to get up closer....and of course a good stiff gin and tonic goes down a treat...so you see the simple pleasures prevail....i don't think so much about the future but live for each day the best i can....i had the ct scan this week (donut day) and we get the results on the twenty fifth....am trying not to set too much store by it....whatever will be will be, and by not trying hard to wish it all better i hope i will avoid the pain of a big let down if the news isn't good....we'll also find out then if i get a one week or two week break before the next course of chemo begins in july....it's significant because it's the only time we will be given by the oncologist for a decent holiday away from it all....we are thinking scottish islands at the moment in the happy knowledge that if the midges bite, with all the chemo drug inside me, they will get more than they bargained for....! i see that there have been over five hundred and seventy visits to this site since i started in january....wow! i'm overcome with emulsion....thanks so much for your interest and support....love and best wishes, jellybean.

going steady

20th march, 2012 and so i'm on week nine of the first chemotherapy treatment and i am happy to advise that I have been doing very well ...the fluororacil or 5fu has been quite easy to deal with....i get a bit drowsy and a little overtired for a day or so after treatment and then i'm fine...well enough to work albeit only part time as a full week would be too tiring...i walk, do the garden, and chores around the house and I keep going as much as i can...the morphine patch is working well and keeps the pain under control fairly well...there are still some aches and pains seemingly quite random and i also use paracetomol some days which helps and which i prefer to the prescribed liquid morphine which binds me up badly and makes me squiffy.... . . the oncologist also says I will develop a resistance to the chemo drugs and the longest he's known the 5fu work is twenty months...after which he'll go onto other drugs and combinations thereof....the difficulty is though that there are only four drugs he can use for this type of cancer....and the others are much more aggressive than the one I'm on at present....so long may it work because the treatment is likely to get rougher and tougher.... . . for the moment though we are calm comfortable and content....i don't think much about the future and instead i live for the moment...ambition is replaced by treats and gratification in the here and now...for example we are becoming well known in the local tea shops where tea and scones is very much the order of the day... . . there will be a scan next month and a further meeting with the oncologist on twenty fifth....i'll post again then so you can keep up to speed....in the meantime my best wishes to you all....jellybean

alright now

my week now revolves around thursdays when i fetch up at the norfolk and norwich weybourne unit for my weekly fix of a chemical cocktail which i hope and pray will kick tumour backside....lynne drives me when the appointment doesn't clash with her shift and today it did not....i still am overawed at times by her kindness and devotion as it's not really been something i've much been on the receiving end of for many years....anyway it was as cold as an eskimo's breakfast outside this morning as we make our way in her ford ka with me riding shotgun....happily the revised fix of 5fu on its own only takes a half hour max to deliver into my bloodstream and then we slip away grateful to not be spending all morning in there like some of the other patients....the side effects make me queasy and i don't have much appetite for the rest of the day....also I get tired and dose off dormouse like a few hours later....there is also a metallic taste in my mouth and food tastes funny....happily though am putting weight back on and am now 10.5 stone....tomorrow i'll be a bit better and by sunday i expect these effects will diminish although i remain quite tired during the whole week and manage a half day of activity before wanting to sit down again....i imagine this will be the pattern of my week for a few months to come....jellybean

no more 'poxy oxy'

thursday 19th january...as a result of my medication review i have been taken off the oxaliplatin as the oncologist thinks it would not be prudent to risk my health any further for the time being at least by continuing with it....i am to carry on weekly with only the 5fu for three months when they will do a scan to see how i am responding....i am relieved as i can see my way forward to regaining my strength and weight....but my wife lynne is concerned because she knows the 5fu won't work as well on its own and she's so rooting for me to give this cancer the biggest kick in the teeth that I can muster....i agree but i know also that i have to find the balance between fighting off the illness without knocking me down and out...then i managed to faint to-day whilst the nurse bodged my blood test when she stuck me with needle endlessly to find a free flowing vein in my hand when normally they stick me in the arm....then it took ages for her to coax the blood out of me and she was pushing and pulling on the needle so....well ouch...and eventually i keeled over and was gone!...to tell the truth i was mostly embarrassed because in close proximity to me were other patients and family members including a teenage girl sat right next to me....it's no condition to be seen in by strangers frankly....i want to be stuck in the arm next time not the back of my hand....thus far the 5fu has made me tired and a little queasy but otherwise am ok...

can't cope with this

thursday 12th january...and so a week later i check back in at oncology at the n+n....before the nurse gets to stick me with the canula i ask to see the doctor....he takes me to a side room and i list all the oxaliplatin 'fall out' I have been through...(see below)...he weighs me and i've dropped down even more into the high nine stones...he tells me there will be no chemo this week and he'll refer back to my oncologist for instructions....I breathe an audible sigh of relief and shuffle off to visit the hospital cancer help centre where i speak to a kind ex nurse and tell her of my mounting fears about this doctor saying there are no guarantees that i won't be as sideswipingly sick as I was last time around the next time around - if you get my drift...it makes me weep at times with fear and foreboding....i decline the offer of a cup of tea and take the bus back home calling in at m+s to buy my self something tempting for supper....am now hoping my strength resolve and courage will have a chance to build again before next thursday....

sick as a parrott

Monday 9th January
Well I was as sick as the proverbial dog and parrot combined for three days, and have held bar nothing down. Alarmingly I have lost another stone in weight and am now down to ten, having been fourteen before all this started.....!
Happily I am well on the mend now and have been getting on the outside of some reddy brek, oranges and beans on toast. It's kiddy comfort food I know, but it's whatever you fancy is the thing to eat I'm told.
I've also been to see my gp and he advises ask the oncologist for a plan B. It would not be prudent to go through that again every three weeks. It's reassuring to have my expectations confirmed and I can now face up to the oncologist with some certainty.
Also I am so weak. Just standing makes my back ache. I am determined to get back to work though and will try for some tomorrow.
Lynne has been amazing and so supportive. I'm so very fortunate to have her by my side.

bracing myself

well the oncologist gave me paperwork describing the side effects of the chemo drugs they will start me on in the new year.....in a nutshell we are talking

numbness
lowered resistance to infection
bruising/bleeding
anaemia
nausea
diarrhea
tiredness/feeling week
breathing problems
allergic reactions
mouth ulcers
taste changes
hair loss
blurred vision
light/heat sensitivity
skin rashes
risk of blood clots

there are more but perhaps i've seen enough already!
if i'm lucky i'll only cop some/a few of them...otherwise I could be suffering with most...
it will be the oncologists job to find the drugs that control or even reduce the tumours and which produce a minimum of side effects....my gp says he's good so i'm optimistic.

!