Pain everyday.: Finished Taxol just before... - My Ovacome

My Ovacome

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Pain everyday.

shaz_123 profile image
8 Replies

Finished Taxol just before Christmas to be advised not working. Waiting for oncologist to get back to me to see if I can go on a trial treatment. Still waiting to be told yesterday its going to be another week before they get back to me. I'm in bad pain everyday in lower abdomen, back the tumour is pressing on my bowel, i take morphine liquid and tablets they do help but they soon ware off.

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shaz_123 profile image
shaz_123
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8 Replies
peanut2 profile image
peanut2

Hi Shaz Do you have contact with palliative care they are very good with pain management sounds like you need review so you don't get break through pain. I know many of us hate the thought of palliative care but they are able to help just a thought

Kris x

shaz_123 profile image
shaz_123 in reply to peanut2

Thanks Kris, will look into it xx

TinaB1 profile image
TinaB1

Hi Shaz .. I'm sorry you're in such pain. There is no reason why you should be suffering in this way whilst you get the trial sorted out in my opinion.

From the time of my diagnosis through the A and E route, I had a lot of pain which was debilitating. The pain increased and my bowel stopped working properly. Nothing was done about it for two and a half years until I turned up at my GPs doubled over and tearful.

The hospice had been mentioned on the previous visit the week before as in 'Do you want to be referred to the hospice for pain and bowel management?' Of course, I was very shocked because of the connotations.

Little did I know that the hospice is where the pain management for cancer specialist has her clinic.

I got opiat patches immediately at the lower strength. Taking Oramorph would have made me constipated as it's an oral opiat. I had paracetamol to top up.

Bowel medication was increased too.

I had a number of visits to the hospice and found the consultant to be a no nonsense, gentle, open woman who spoke to me straight which is what I like.

I got an increased dose patch, paracetamol, and Naproxen to manage the pain. Over the course of two months, the doses were tweaked.

Instead of just Movicol for bowel management, I was given Bicicodyl too.

I can't tell you enough how my life improved.

Since then, the pain has gradually decreased and I'm off most of the pain medication including the patches which, to me, is nothing short of a miracle.

If your GP thinks this is chronic pain, I feel you need proper help to manage your symptoms. Nobody should suffer from these symptoms is my honest opinion. There's no need for it. Not only is pain debilitating. It also makes a patient acutely aware of their illness which leads to psychological stress too.

It was a long time before I realised that cancer patients suffer from what's called (professionally) Total Pain which is physical, psychological and emotional pain all rolled into one. It can be very distressing.

If I were you, which I'm not I might add, I'd ask for a pain and bowel referral. A GP isn't normally qualified in pain management,

Sending love and hugs. Xxx

p.s. This is a TLDR (Too Long Didn't Read) post but if you got to the end, I send my apologies!

shaz_123 profile image
shaz_123 in reply to TinaB1

Thanks very much I'm definitely going to do something xx

I think that sums it up, ring your oncology team or unit and ask them to help sort your pain. It can be very debilitating as I have known. Your team would either refer you to those involved in pain management or assist you themselves. There is no reason for you to stay like this so do look for help. I am off all meds at the moment apart from an odd paracetamol so a pain management plan is the way to go and as you feel better, you can reduce your meds accordingly. Best wishes

shaz_123 profile image
shaz_123 in reply to

Thanks I will be doing this at my next appt. X

Susan3 profile image
Susan3

Agree with Tina . Get in touch with palliative care or symptom control team as they are thankfully been renamed as. I ended up meeting them for a bowel problem and was pleasantly surprised at how helpful it was . I suppose they are they experts in dealing with cancer pain so should be out first port of call. It's the name that puts people off, understandably

I really hope you get control of pain soon .

Jo-Bo profile image
Jo-Bo

So sorry to hear about your pain. I hope you have a trial and there is some improvements soon.

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