[donParticipant]

Greetings, one and all,

Here is the story so far of the travailles of a man in his eightieth year.

A couple of years ago, I had a recurrence of Giant Cell Arteritis.

This was not good news.

The medication starts with taking a large daily dose of Prednisolone, and this is gradually reduced so that towards the end of last year, I was taking 5mg a day.

However in November, I was diagnosed with myeloma.  The scans showed that I had lesions on most of my skeleton and the bone marrow sample showed that 74% of my blood cells were cancerous.

This was not good news.

It was speedily arranged that I would pop into hospital to start the treatment but a couple of days before that date, I had a pulmonary embolism. The blood clot landed where the artery divides to each lung, both of which contained blood clots.

This was not good news.

As I lay in the trauma unit the options were to keep on breathing or settle for a wooden overcoat and I opted for the former.

After five months of medication of Velcade, cyclophosphamide and dexamethasone, the consultant decided that my progress was ‘satisfactory but could do better’, a phrase contained in most of my school reports. To check on how things were getting along, I had another bone marrow sample taken and another Pet CT scan. My level of cancerous cells was down to 50% but the scan identified an unrelated cancer in my bowel.

This was not good news.

I went back into hospital to have a colonoscopy. This started by drinking two litres of a revolting liquid called MoviPrep. Not the most advertising friendly name – it should have been called Faith, for it can move mountains. The colonoscopy was painful but I could see the growth on the screen. It was not as exciting as watching the World Cup.

So, next Monday, I shall be having keyhole surgery to cut out the offending length of bowel and have the two ends stapled together. I suspect this will probably start with more of the MoviPrep. Ugh!

So, this has been an interesting six months, though not the pattern that I would have chosen. Do remember, when you feel down in the mouth, so was Jonah and everything turned out okay for him, so it probably will for you also.

Best wishes to one and all

Don

 

[wallaceParticipant]

Hello Don,

I like your sense of humour in the face of adversity, where are you being treated?

Mike

[kpParticipant]

Hi Don,

Crumbs, what a time you have been having, hope all goes well with your keyhole surgery on Monday.  You must be feeling quite battered by everything that has been happening to you.

I too love the humour, keep positive, medical science is amazing these days.

Best wishes

Karen

 

[PerkymiteParticipant]

Best of Luck Don. What more can you really say :-)))

Kind Regards – vasbyte

David

[tonyfParticipant]

Nothing more to say Don, I wish you all the best for the future.
Regards
Tony F

[donParticipant]

Hi all,
Thanks for reading my tome.
Mike, I am being treated at Milton Keynes Hospital, in the McMillan Centre. Praise doesn’t come high enough for the nurses, doctors and consultants there. I have put them under some pressure for I have assured them that, if they don’t keep me going until I am eighty five, I will return and haunt the McMillan Centre. That should keep them on their toes.
Karen, the real victim in this has been my social secretary, financial controller and life organiser, for she retired last September but before she could start to enjoy her retirement, along came MM and then everything else. Like others, I get very fatigued and breathless, my bones ache and I get grumpy and I’m ashamed to say that I sometimes forget momentarily that all this is worse for her than for me. She organises all my medication, including my daily injection of heparin, which will continue indefinitely. I am apprehensive about going to the pub for I have had so mant needle injections in my stomach that I worry that the beer might squirt out in all directions.
Thanks for the good wishes, David and Tony F.
One thing that I have done is put my affairs in order. If I should pop my clogs, I quite fancy my final exit being accompanied by Gracie Fields singing ‘Wish me luck as you wave me goodbye – Cheerio as I go on my way’ it would make an interesting change, don’t you think.

Don, otherwise known as the Cancer Kid

[tonyfParticipant]

Hi cancer kid, otherwise known as Don. What a wonderful outlook on life and death. I hope that you are considered an inspiration at the hospital, if I had to be parked up next to anyone in hospital I would choose you, a laugh a minute, bet you keep them on their toes.
Good luck.
Tony F

[mhnevillParticipant]

Hi Don

Like the others I admire your style. So sorry you have so much to cope with.

I do believe attitude counts for a lot, so if anyone can get to 85 it must be you!

All the very best for the surgery. I do hope it goes well.

All best wishes.

Mavis

[elsshepParticipant]

I love your sense of humour, you will make it to 85 :). Your amazing outlook inspires me.

Good luck x

[donParticipant]

Thanks everyone for the kind wishes.
We had a lovely evening, sitting in the garden until 11.30, having had a BBQ and a beer.
I had a couple of phone calls from my great grand children, but they are a bit too young to know how things are.
Today, it’s off to hospital. My grandfather advised me to ‘always keep yourself out of the hands of doctors and lawyers’ and generally I have followed his advice. On this occasion I have to let them get on with it.
Grandfather maintained that he could remember a winter when it was so cold that lawyers had their hands in their own pockets.
So… I’ll post here in a week or so and let you know how things went. If I don’t post, well, all the best to you all.
Don, Darling of the Debutantes, 1953

[kpParticipant]

Dear Don,

Best of luck for your operation tomorrow. I am sure you are in good hands.

I look forward to hearing how you got on and also how the nurses cope with your irrepressible humour. I expect you will be like a breath of fresh air as you recover from the surgery.

Best wishes to you and your social secretary, financial controller and life organiser.

Karen

• This reply was modified 10 years, 3 months ago by  kp.

[donParticipant]

Well, now, where are we? Oh yes, I said I would let you know how things are.

The news is that The Bad Penny has turned up, replete with irritating jokes.

I can’t bore you with details of the operation for I was in the Land of Nod and remember nothing. The aftercare was tremendous, from consultant down to cleaner. For this operation the hospital runs a programme of Enhanced Recovery, so having awoken at 17.00 on Monday after the operation, on Tuesday morning I tottered for ten steps and gradually over tha past week this was increased, so that, by Friday I could go to the loo on my own, reawakening a satisfaction achieved when I was three years old.

Now home, my diet bans roughage and consists mainly of things that are not good for you, but are good for me.

Things get a bit painful at times, but this is nothing when compared to the agony suffered several times each match by Premier League footballers when tackled. However they recover immediately, being made of sterner stuff than mortals such as I.

More later

Don ( aka ‘The Cancer Pensioner’ )

[kpParticipant]

It is good to hear from you Don, glad all went well and hope you feeling stronger every day.
Best wishes Karen

[donParticipant]

Thanks Karen,

Assuming that the operation has totally removed tha cancer in my bowel, we can focus on getting the myeloma into remission. That’s my next target.

If you think about it, we set targets throughout our lives and achieving them can give a great sense of satisfaction.

How about these.

At four years, getting through the night without wetting the bed
At ten years, having two or three really good friends
At eighteen years, having a driving licence
At twenty three years, having a true love to share life
At thirty years, having a happy family around you
At forty years, having enough money to live life in reasonable comfort
At fifty years, having a happy family around you
At sixty years, still having your true love to share life with you
At seventy years, still having a driving licence
At eighty years, having two or three really good friends
At ninety years, getting through the night without wetting the bed

Think on these things, my friends in adversity

Don

[donParticipant]

Hi y’all,

Generally things are getting better, my bloods are back to normal and I am on a holding regime of Revlamid. There are just a few remaining clots in my lungs but nowt to worry about.
At the start of December I was back in hospital with pneumonia. When my temperature spiked and my blood pressure went down by a third, I thought this was my grand finale and I wondered if I should decide on something pompous to say as my final words. Onyroadup, things got better so I’ll be around for a bit.

Apropos Revlamid, as I was on numerous antibiotics when in hospital, I stopped taking my daily Revlamid pill. I saw the consultant last Tuesday and she decided that I should restart the cycle and I received the 21 Revlamid pills, for I take them for three weeks and then have a week off. As I still had 13 pill left from my stay in hospital, I asked the MaMillan nurse what I should do eith the pills.

She explained that, if I gave them to her, protocol required that she throw them away. She suggested that take them and then eight from the twenty one in the prescription and she would reduce next months prescription to eight so that all the pills would be taken. She then explained that a packet of 21 Revlamid costs £5000.

I could hardly believe it but a check showed that an equivalent price is charged in the USA. This means that my daily pill costs the NHS £250. Unbelievable! I’m on my nine month of treatment with Revlamid so the cost must be around £45,000.

If I think of all the scans I’ve had, the numerous stays in hospital, the hours spent with the various consultants, the keyhole surgery on my bowel and the hours being treated in the McMillan Centre, I shudder to think at the cost and effort spent at keeping me, an eighty year old man, alive and well.

Think you, NHS and my thanks to all you taxpayers who have funded may treatment.

Don

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