Back pain

Hi Poppydays,

Thank you so much for your response and for the information. Big congratulations on completing week 5. You are almost there and only a few more daily trips. 

It really says a lot when you say that the nerve pain is distracting you from the other symptoms! Goodness knows how you’re managing both and retaining your kindness and positivity. 

I only took the morphine briefly at the end of week 5 and into the first week post treatment and while I was initially reluctant it helped so much at the time.

 I never imagined I would be taking daily morphine again as I am at the moment. I would say that it has helped a bit in dulling the pain for a few hours but it is still pretty intense and breaks through. i most definitely don’t think it’s worse than yours but similar. 

I asked at the hospital if a steroid injection was possible but was told to wait and see. I’m not sure for how long. The department I was sent to by MacMillan nurse and for review of MRI was the emergency ambulatory care unit so not specialised. The doctor I saw last Monday was quite dismissive and suggested that this was just general ‘wear and tear’ so I felt like an annoying old lady moaning about aches and pains when I am climbing the walls with the intensity. It is a you say a special kind of hell.

 I’m glad that you are scheduled for a spinal epidural and am sure it can’t come soon enough.

 Hoping that you manage to rest up and have a peaceful weekend.

Sending big hugs xxx

Thanks PEB24

I’m currently waiting for my 3 month MRI and a I’ve sent my Physiotherapy report to the oncologist! It’s such a waiting game and juggling with various side effects and symptoms!! We’re all the same boat so know so thanks everyone for the advice!  

Hi Heather09,

It’s good that you’ve forwarded the report and can hopefully have a more comprehensive MRI including the spine.

It must feel like endless waiting and I’m sorry you’re having to juggle all the other symptoms on top. That’s a tough call and can only imagine the stress.

Sending a large hug x

I'm trying to take a moment before responding because I feel such outrage on your behalf. Spinal stenosis is a real diagnosis, and the pain associated with it is well documented. I can't believe your doctor was dismissive! 

Is it possible to get another doctor? Did you ever see a neurosurgeon, or was that the doctor who was dismissive?

I saw a physiatrist (Physical Medicine and Rehabilitation) and am considering asking to see a pain specialist (generally an anesthesiologist with special training)--both can do various nerve blocks and epidural injections. Do you have access to such specialists?

My heart goes out to you because nobody should suffer as you are suffering. Please don't be shy about pushing to get the care you need. And make sure whoever provides it knows that you have had radiation therapy.

Please keep me posted. I'll be thinking about you. Xx

Hi Poppydays,

Thanks for your understanding. I know that you absolutely get it and can understand my frustration.

The hospital contacted me on 15th March and asked me to go to the EACU unit to review the scan report on 17th. They told me that they had found the cause of the pain and confirmed that it was nerve compression due to stenosis and started the morphine and pregabalin. They also said that it would be reviewed by the neurosurgeon so I at least felt hopeful. The scan also showed some spots on my liver. They asked me to go back on 24th which is when I saw the unhelpful doctor who didn’t seem to really know why I was there. 
He did double the medication but no other follow up or suggestions and dismissed my query about possible steroid injection.

As you say will just have to battle on but it’s kind of exhausting having to do so. It’s the same department that were dismissive of the anal cancer symptoms of pain and bleeding so it sort of brings it all back.

Apologies for going on about it but it does seem to be a bit all-consuming as it’s now 6 weeks since it started. 

Anyway- rant over! 

I hope you are as ok as possible at this stage of your treatment as this last bit is a bit of a crescendo of symptoms and a tough time. I do hope the medications are helping and that you are having time where it’s possible to rest over the weekend. Thinking of you and sending love and strength for the coming days xx

I cannot begin to say how upset I am for you! To be going through this at all is horrible, but then to be flogged off is like getting kicked in the head when you're already down.

I came into this already having degenerative spine disease, so I know a bit about what you're dealing with. I had to go off all my RA and OA drugs but was still able to get a spinal injection, which I know has helped so very much already. Because my tumour is protruding, I've been given pregabalin for nerve pain along with Oxycodone extended-release, as well as a liquid for a breakthrough. Contacting the Macmillan team has been what saved me. I am still in a lot of pain, but I know it could be worse.

Holding space for you and praying for relief

Hi PEB24,

I'm baffled why the one doctor is so unresponsive. It sounds like a doctor problem, to be honest. Is there any way you can work around him/her to get to a doctor that is more responsive? 

As for the pain seeming all-consuming, I have total sympathy. When pain is so intense, how can it be otherwise? My pain has limited my ability to walk and because I'm on round-the-clock narcotics, I no longer drive. I'd say that's a pretty significant impact on quality of life.

Thank you for your kind words about my own situation, and I am appreciating this weekend break from treatment. I still don't know if radiation therapy is contributing to my nerve pain, but I am hopeful, once treatment finishes this week, to see some improvement in symptoms.

Please take care and keep us posted. I'm thinking of you. Xx

Hello PEB24

You have a lot going on at the moment and I am sorry that there is such uncertainty around what is going on which certainly can't be helping your frame of mind - and pain is just so debilitating.  I may have mentioned before that I have had checks on my painful hips, physiotherapy (the physiotherapist said it could be my age and took one look at my face and backed down - I was superfit BC) and finally an Xray which showed I have degenerative osteoarthritis in both hips.  I had absolutely no problems before and had regular hip checks.  But that doesn't come near what you are experiencing, plus dealing with a doctor who ignores the bedside manner aspect of care.

And I hope these spots are harmless, please let me know how you get on.

Gentle hug

Irene xx

Hi Irene,

Thank you for your kind words.

 I’m sorry to go on about back pain on what is a cancer forum, but I am convinced that the issues have been caused by the treatment or at least exacerbated by it given zero history.

It sounds like your onset of hip pain was similar. I hope that you are able to manage it as you sound like such an active person and can imagine the challenges. 
I am hoping that somehow I can access a steroid injection but it seems like it will potentially be a battle.  

Thanks again xx

Hi Poppydays,

 Thank you so much. I think you’re right in that it’s a doctor problem. Despite being booked for review I don’t think he got it and couldn’t get me out of there quickly enough! I will absolutely push for an injection as it’s now week 7 and I don’t want to be on constant strong narcotics.

Wishing you well for your final treatment days ahead this week. You are well and truly almost there. It’s incredible how you have managed to go through this when you can barely walk. I am in awe of you!

Wishing you strength and big hugs xx