High Grade NHL Stage 4

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My mum is going through R-CHOP 4th one due this week.

My mum has two large spine tumours which has caused paralysis, eventually diagnosed as HG NHL.  Has anyone had paralysis and did it reverse after treatment?

My Dad has Lung cancer and going through immunotherapy.  They both have lived with me for 14 years

I need to make a room downstairs for my mum now, as she may need a wheelchair.  

I have a toilet and would need to try adapt and build onto it to make a wet room shower.  Do you know if financial help from the Authorities is available for this?

They are both on basic pension but my house is bought and I work full time.  It is the house I have lived in raising my 3 kids as single parent for past 15 years.

Just a bit lost at the moment, was looking at trying to get a bungalow but very confused at the moment with it all

Any suggestions would be much appreciated.

Thank you

  • Hi  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

    I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

    Although High-grade non-Hodgkin lymphoma is fast growing it normally reacts well to R-CHOP and there is an expectation that it should reduce the tumours in your mum's spine...... but time will tell.

    My main growth back in 2013 was in my neck and it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted and my treatment - slightly different from your mum's did the job rather quickly.

    As for you looking for support with regards to try and adapt and build a wet room shower you may want to put you questions to our experts in our Ask an Expert section but do allow a few working days for a reply..... or call the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 and speak with our benefits/financial guidance team.

    Always around to help more or just to chat

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • thank you so much Mike for your response I will look at Ask an Expert for this.  Wishing you good health 

  • Very sorry that you have so much "on your plate" as they say. There is a way in which you may take some occasional time off. Care of the caregiver is crucial. Family, friends,  neighbors, co-workers - someone, somewhere, will be able to pitch in and give occasional help. Can social services offer anything? The important thing is to care for yourself. If you are in hospital from being over-stressed, what good then? This exact thing happened to my wife, several years into my journey. All was well, but it only added unneeded stress to a stressful situation.

    ______________________________________________________________________
    One cancer (PTCL-NOS) 3 times. Two other cancers: Angioimmunoblastic T-Cell Lymphoma 2 times, and 20q deletion MyeloDysplastic Syndrome) were chemo refractory. All three cancers simultaneously in 2015. Stage IV twice + MDS @ 23% of marrow. 12/22 diagnosed with Squamous Cell Carcinoma. Thus far, 14+ years, 20 drugs, 4 clinical trials, Total Body Irradiation, 1,000+ years of background radiation from scans. 7th remission so far. Haploidentical stem cell transplant, acute > chronic Graft-versus-Host-disease. Currently receiving my 7th GvHD regimen.