Primary CNS NHL

Hi RABMK 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 am so sorry to hear about your partner's recovery challenges.

I don’t have CNS Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Long term inactivity can cause significant muscle wastage. During my second Stem Cell Transplant I was bed bound for weeks including a few stays in CCU..... so the day I left the hospital I was in a wheelchair and could not walk.

My Consultant told me that going through treatments like these was like doing a boxing match and a marathon every day over the months of treatments and this was done without any training.

Think doing the London Marathon without any training and you had to finish it as your life depended on it……. this is the journey your partner has been on.

The problem with recovery is the 'less you do' the 'longer the recovery takes'. There are signs around our Haematology ward that says a week in bed can reduce your physical fitness levels equivalent of aging 10 years........ I must have been 100 when I left the hospital ;)

I was quickly referred for Physiotherapy and actually started attending sessions within the week....... I was going 2 times a week for 4 months and during these sessions I was slowly shown how to get active and rebuild my muscle mass.

At home we set very small but achievable goals for every day. At the start it was as simple as getting out of bed, having a shower and getting dressed...... my wife did not allow me to stay in bed..... ever.

Once I was on my feet and able to walk a small distance with walking sticks we set small walking goals. Along the street to the first lamp-post and back.... after a few days it was the second lamp-post and back...... I also had to make my own coffee.... just to get me moving about.

Once he starts any small activity his body is going to complain as the pain from the muscles will scream at him but he will have to push through to rebuild  the muscle mass.

After 4 months I started going to a men's circuits class at my local Maggie's Centre where the group were given specific exercises to strengthen our bodies - the class was run by a cancer trained instructor.

The NHS is great at treating us....... they don't have the facility to do the post treatment rehab well.

Recovery after treatment takes a lot of commitment on both side of the family and I have to say a touch of tough love from you .....just as my wife had to do to keep me motivated.

Always around to help more or just to chat ((hugs))

Thank you so much for your reply- at times like this h believe that h are the only ones with thus particular issue & worse still think the treat has failed. We have not been offered Physio although I have requested- u will request again as my partner is more likely to respond when pushed first by a medic ( this helped me with my dislocated shoulder.

your advice has been so valuable thanks again- Jan

Hi Jan RABMK 

The post treatment journey can be as hard as the treatment journey and I often think it's actually harder for the ones looking on as they often feel powerless..... The challenges you are facing are not unusual and you are not the only family walking this walk.

My journey is 23 years long so we have had time to develop our ability to deal with stuff and as to how to move things forward (see my story in the link at the bottom)

You may want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.

They run regular Support Platforms both for patients with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

I have read through your full journey & it is so inspiring & I can not begin to relate to all of the challenges that you have had to fight through all of the way.  Currently my partner is very weak & although some of this is muscle wastage there is certainly something else going on as he was far more mobile a week ago.  Bloods done by the GP came back abnormal & not getting any sense from them so have approached the Cancer Centre for support & they have suggested that he needs full bloods done & a review there which should be soon. My partners speech is starting to slur again which is not a good sign although I believe that radio therapy can do this 

the waiting game for answers can be very difficult & you can not help but fear this worst at times

Jan

Hi Jan RABMK sorry to hear this and based on my journey you have to lean on the shoulders of Hope all the time....... there is always Hope until there is none.

You did the right thing in getting in contact with his cancer team..... GPs actually don't have much idea this close to folks having completed treatment so your first stop is always his clinical team until 'they' transfer his primary care back to his GP and for me that took a few years post treatment.

As for the 'power' of radiotherapy it is considerable....... when I had my Total Lymphoid Irradiation on all my bodies Lymph-nodes in June 2014......... it was still working in my body in Oct 2015 when I went for my second Stem Cell Transplant.

I hope you get answers soon ((hugs))

Has he any history of depression? Did you perceive any at his diagnosis? It is certainly conceivable that the stress of all of this has brought about a certain level of depression. Although the stress is primarily physical, the mind suffers along with the body. "IF" it might be a concern then some help, at least with the fatigue, might be on the horizon. He could enquire himself, or you could even ring up and mention it to the staff. Otherwise, it is a long journey back, but with perseverance, will pay off.

No , with having Altzheimers he is forgetting he has NHL which is good but the pain in lower arm, wrist and thumb is really getting him down, and is not improving at all.  

So sorry to hear about that bit. Good news out of the bad. Have his blood numbers rebounded after treatment? Anaemia is one possible side effect and this will certainly exacerbate any fatigue. The (nerve?) pain is curious. Is his arm/forearm swollen? I have faced with that  from time-to-time in one arm and one lower leg. it can impart pressure on the nerves and be quite painful. When that occurs, I was advised by the nurse to wear a compression sleeve or compression hosiery as would reduce the  swelling and help to prevent any potential blood clotting. Am tossing out ideas which pop up here. 

His GP has given him a compression bandage and suggested icing but doesn't seem to be working.  No idea about anything regarding numbers.  The wrist looks a strange colour - not quite a bruise colour.  Thanks for the info.

If he has a low red blood cell count, that would put him either close to the limit or into anaemia. It can cause all manner of difficulties, shortness of breath, weakness, loss of balance and very low energy. As we age, our bone marrow is "experienced", thus it may take longer to recover from the treatment cycles.