Hi all,
I was diagnosed with low grade fibromyxoid sarcoma on my neck/back area 6 months ago. As part of the surgical procedure, they removed the tumour, trapezius muscle and levator scapula muscle; and reconstructed the area with a flap using the latissimus dorsi muscle.
The operation went well, and my scans so far do not show signs of recurrence. It took me 3 months to start doing "normal" life again, I did a phased return to work this January and by February i was working fine and living as I used to, just carrying less weight with the affected side.
As part of the recovery, I was sent to physiotherapy sessions, which started in December and have consisted in being given 5-6 exercises to do at home with the idea of building my strength. The physio sees me every ~6 weeks and also checks if I'm stronger and my mobility a bit.
This past month/ month and a half I've noticed that the muscle(s) reminding on the area affected are getting really sore. Long walks seem to be the thing that triggers the pain the most, and this past weekend I could barely move my arm and neck for 2 days after going for a walk (20k steps). I can visually see how the muscles are tense, and even if I and my husband have tried to massage the area to try and un-knot it, it hasn't been possible and I'm still in pain.
Here comes my questions (sorry for the long-winded explanations!): Can NHS physios do anything regarding this? And how can I make them understand that I need something more other than just exercises at home (massages for example)? When I explained my pain to my physio before, they've just said it's normal and haven't really offered any alternatives. I'm feeling a bit dejected as I was promised that after surgery I would receive intense physio and help and that never materialised. I'm also struggling a lot with anxiety at the moment, as I am worried this pain will continue to get worse, will set me back, and make me have to stop working. Working is extremely important for me.
This also brings me to another question: are there any physical therapists or massagists that anyone could recommend in the central/north london area? Specially any that are affordable, or any options offered by charities, as I don't have the economic capacity to pay for these types of services for lots of sessions.
Any advise or help would be greatly appreciated. Thanks to all and also sending you lots of strenght for your own journeys.
Hi AAF
Sorry you are going through this and also sorry there have be no replies so far. My experience of cancer is via my wife who has a different type of sarcoma with a very different treatment so have nothing really to share in that line.
I do have some experience of NHS physio because I have a form of rheumatism in my spine but my experience there is around Oxford rather than London so cannot really comment there though I certainly get the feeling of frustration with being given exercises to do at home.
Hope you find some answers soon.
<<hujgs>>
Steve
