there’s a Vibe in the soup … and there's going radioactive

3 minute read time.

There’s 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!)

If 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.)

However, 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.

 

After 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 the pain.

 

As 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.)

 

Nearly 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.

 Hmm. 

This comes as no surprise to us.

 In 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.

The good news on the scan is that ‘there is no visible invasion of the aorta.’ 

 Phew! 

 That is all right then!

 And we had only been worried about a little spread on the spine. 

But it is not good news, is it?  Or it doesn’t sound so to us. 

After 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.   

Our Hero is now going to be offered some 'palliative' radiotherapy and his appointment diary is getting very full. 

You 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. 

You 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? 

Poor us. 

It is all hell, and we are all going radioactive. 

 

PS The 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 ….   

 

 

Anonymous
  • FormerMember
    FormerMember

    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.

  • FormerMember
    FormerMember

    Hi Buzzie,

    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

    Daffie xxx

  • FormerMember
    FormerMember

    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

  • FormerMember
    FormerMember

    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

  • FormerMember
    FormerMember

    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.

    xxx