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a vibe in this soup … and there is going radioactive
We now have so much in the way of pain
relieving opiate-type ‘meds’ in Cold Comfort Cottage that we could be doing a
brisk trade in the village square to replenish the diminished funds. So I will not be making any joking
‘asides’ about topping up the poisons of your choice. (But, go on, if you must!)
the blog has been quiet it is because the writer of our ‘script’ has recently seemed
a little bored with his characters and it looked as if he/she was hastening
them towards the end of the series.
(But, really, I have not had
the heart for it.)
the script has a few more twists and turns in store for us yet – or so we
sincerely hope. But it has been
touch and go, my friends.
some truly terrible pain-filled days, some frantic phone calls, some threats of
formal complaints, we have had not one, but two oncologists coming out of the
woodwork (or taking time out from the conference season, which might be considered
to be much the same thing).
We will do a little flashback for new
readers: more than two months ago,
Our Hero raised the point that he had a ‘little’ back pain. (For that ‘little,’
read ‘excruciating’.) The nice registrar pointed out that it could be the affected
lymph node/s pressing on the spine and radiotherapy might be offered to help
quick as a flash, the big boss oncologist has Our Hero back in to the local
hospital to prove, it seems, that it is nothing to do with the lymph nodes but
it is more likely to do with the treatment (PDT) which we have sought
elsewhere. He prescribes a
slightly stronger dose of Cocodamol. (Keen readers will remember that he prescribed the
‘tablet’ form – impossible for Our Hero to swallow.)
two months on the pain team, in a hospital several hundred miles away, who are
monitoring closely the doses of pain relief drugs required, suggest that Our Hero
has clearly been putting up with a lot of pain and it might be coming from the
lymph nodes on the celiac axis.
This comes as no surprise to us.
the meantime, another scan has been done, because we (with the other hospital
behind us) have kicked up a fuss, and another ‘lymph node mass’ has popped up on
the scan, sited between the spine and the aorta. It is not a tiny ‘mass’ – it measures a fairly hefty 3cm x
something. Given that the other
tumours are growing so slowly, if at all, this suggests that this one has been
there for some time, doesn’t it? Or does it?
I don’t know.
good news on the scan is that ‘there is no visible invasion of the aorta.’
is all right then!
we had only been worried about a little spread on the spine.
it is not good news, is it? Or it
doesn’t sound so to us.
I point out to the GP and, later, to the Macmillan nurse, that Our Hero has
been putting up with this pain for more than two months, and that I think that
if something is not done soon I will, I tell them respectively, ‘kick some ass’ and ‘put in a formal
complaint,’ the phone has hardly stopped ringing.
Hero is now going to be offered some 'palliative' radiotherapy and his
appointment diary is getting very full.
will remember that I am being ‘phased’ back into work to top up the funds? Being ‘phased’ back in’ is a little
like ‘phasing out’ nuclear missiles, except in reverse. Like an elderly nuclear missile, my
timing and control is very unreliable.
can imagine my anxiety as I try to work out how we are going to manage all this. Work?
Radiotherapy? Appointments? All those questions that need to asked of the medics? The Hounds?
It is all hell, and we
are all going radioactive.
liver metastases are all stable – to start with this was the major
concern. The PDT also seems to
have slowed the growth of the primary tumour in the oesophagus. Just thought you might be interested ….
dear buzzie, well I am flabergasted at the whole predicament you are in - having to worry about finances and going back to work is the last thing any of us need - it just compounds the nightmare we are already going through! I too have been having really bad back pain in my right middle back which is worse when I go to bed at night to have a read but I am just given more meds and told there is nothing wrong - why give meds then?! I shall read your blog in more detail to learn who you are and where you are coming from in terms of treatment. I didn't know you could ask for a second opinion without causing bad feeling but whatever it takes you keep on fighting. I hope your partner's pain is now being more controlled and thank you for sharing your blog with me. Ann xx. Wish you both all you wish for yourselves.
I do so feel for you both. Suffering two months of pain is totally unacceptable, and unbelievable in a so-called civilised society.
Is it disgraceful that you have had to fight every step of the way to get relief for your hero.
When does the radiotherapy start? I hope you will soon be able to reprt that your hero is getting some relief.
Love and good vibes to you both
Hi Buzzie, isn't it unbelievable that someone has to suffer such pain for so long a time without someone doing something about it. We are constantly told that no-one needs suffer in this day and age and yet........
I hope the radiotherapy has a positive and fast effect.
Best wishes, Christine xx
Dear Buzzie - I've so missed your blogs, but you must be worn out with all the fighting you've had to do. I hope the pain is sorted for your hero soon. Best wishes to you both. Val X
Thanks for your kind comments and anger on our behalf - as always it is much appreciated.
Just thought I should add that our anger is not directed at either the GP or the Mac nurse - a fact that might have been lost in a particularly bad sentence! Nope - it is the big boss onc who is the baddy of the story.
Best wishes to all looking in.
Its obvious to all the oncs ego has been dented so his misguded approach to be proven right is not doing anyone any good. I am guessing having a new onc is not a practical option, but you are able to call on the advice the other team who have treated your super hero, his status has to rise now.
On a personal note you must both be drained, mentally and physically, I hope you do both get some respite to recharge the batteries.
If you have any energy left then the time may have come to either formally complain or approach pals if you have them in scotland to resolve the ego problem of the onc.
best wishes and strong vibes to you both
Buzzie- Am quietly looking in & watching and see your hero is rallying again (do hope you are as well ?) Don't be 'polite' & hold back on the complaints as we were told (aside by a cancer nurse during vhemo.) that it does them good to be on the pointy end of the stick & stop them being complacent - don't they always say 'lessons have been learnt' ? I hate that phrase as by now they really shouldn't still be needing lessons.
Glad the PDT has been effective though and your exteme efforts have been worthwhile.
Love to all (& Hounds), Jewels xx
what a pair of fighters, but all energy is needed to fight the bloody cancer not the proffessionals who are supposed to be helping! I too have found we have to fight for attention and even pay for extra help and advice, how sad it is. Still I hope everything improves for you both, fingers crossed for some painfree time to enjoy what really matters, each other. Love leisha xxxx
Hello all - thanks again for replies.
John - excellent advice about getting someone else to work on the complaints. I also think you are quite right about the dented ego. It is very unpleasant to think that we are in some way being 'punished' - that is what it sometimes feels like. But part of the problem must be that Jonathan has done so well, survived so much longer than expected, and has been so adamant that he didn't want a stent, that he has gone outwith their treatment 'protocols' and well beyond their gloomy expectations.
Thank you Jewels - I will keep that pointy end of the stick in mind!
Thanks Leisha - how nice to see you here! You know of what I speak as far as frustrations are concerned.
Lots of love - seize the day, my friends.
Buzzie, I'm late again. I should change my name to the White Rabbit ... but I don't have the ears for it!
It's lovely to see a new blog post from you particulary after what has been (and no doubt continues to be) a really stressful time in Cold Comfort Cottage.
Hopefully the radiotherapy will provide your Hero with some additional and welcome pain relief on top of your supply of (legal!) opiates.
I totally agree with everyone else ... now is not the time that you should be forced to be thinking about work and finances. If I ever track down the leprechauns with the pots of gold I shall ensure that a couple are hastily (and badly) buried at your gate posts.
Lots of love
Bad Fairy xxx
Hi Buzzie, so sorry to hear that you are having to fight so hard. Re the radiotherapy I had palliative radiotherapy on my sacrum(huge secondary mets) in March and had a change of meds and the pain relief is not immediate but it has now kicked in and I am now able to get around easier than before. Def worth a go.
Wishing you both all the best there is,
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