Balance problems. Only symptomatic treatment now.

FormerMember
FormerMember
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I have problems with walking, balance and focussing due  to disturbed sensation from spine and spinal nerve root irritation due to multiple metastatic lesions that affect different areas of the spine. The cancer is in ribs, hips and spine. Pelvic tumour low grade.

No neurological or any evidence of any major nerve root irritation (spinal surgeon Nov 19) so latest letter from neurologist states treatment of the condition is symptomatic with physiotherapy, pain management and walking aid from occupational therapist.

I had 4 round's of chemo and it was then put on hold because of Covid 19. Last one was March 20. At this point I could walk pretty well.

Then had shingles on face and to cut a long story short no more chemo or contact with cancer Consultant since.

Now treatment under the haematology team has come to the end. As above, treatment is just symptomatic.

Is anybody else in the same position please?

I feel very much on my own and nobody has said really what happens now. I feel maybe just a case of having more and more pain relief and that is about it.

Worried about ending up in wheelchair as house not suitable to be adapted for wheelchair use.

I just wonder how others manage in this situation.

Feel in a way that I have just been thrown on to the scrap heap.

  • Hi and welcome.

    I had a different type of NHL and treatment journey but it sounds like you need to get your pointy elbows into the doors of your Heamatology Department.

    These COVID times are challenging but the Government keep saying the NHS is open so kick the door.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Well said  you must  kick  that  door  down  this is worrying times as it is for us all with out your  treatment being  put on hold keep  your  spirits up we all fighting the fight  stay safe  every one  all the best  car /clecker 

  • Sorry to hear about these problems but it does sound as if you need a review as soon as your team can do it.  Bone involvement is sore and it doesn't sound like something to just put up with.   I agree with Highlander - time to deploy pointy elbows!   

    Cecren

  • Hi Sue, sorry to read you have hit the NHS brick wall, have you discussed your concerns with your GP because fi your GP is any good they should help navigate the system to have you reviewed. I had an experience last year during covid where I saw ENT and they did various tests and said I needed to see Gastro and basically they refused to see me despite my GP's intervention, but the GP did arrange a second opinion from ENT which gave me the chance to discuss more fully the issues I had and some solutions, they also explained the professional difference of opinion they had with Gastro colleagues and how impossible it was to get them to take a different approach to patients like me. 

    Fortunately I know my way around the system and have worked with Health for many years and was able to allay most of my concerns and be satisfied with where I got to with ENT and manage the niggle I still have. For others this would be bewildering, hence my advice to try to work with the GP and find a way to have a consultation. PALS at the hospital is another thought if you do need to complain or seek a second opinion through the GP.

    Hope you get things moving

    John  

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are