Worry or not to worry . That is the ?

Hi Jeff, I just picked up your post when I was doing a SCT search to pick up anyone that is or has been through SCT.

I totally get where you are coming from. I have had a rare type of NHL for over 18 years and have had two Allo SCTs over the past 3/4 years. I am now two years post second Allo and I can honestly say that its only in the last 6 months that I have started to been more normal - what ever that new normal now is.

I was walking with walking sticks for 3 moths post second Allo. I had Physiotherapy during my time in the SCT unit and did not get out until the team were happy that I was safe on my feet. Stairs just looked like Mount Everest and I had to crawl up and down them for 3/4 months.

I lost over 23kgs and a lot of it went from my legs. I was bed bound for long periods of time. So muscle wastage was a big issue, but persistent exercise has done me good. I do still have problems going down on my knees and even more problems getting up but it is improving.

My main lasting problem apart from the Peripheral Neuropathy in my hands is nerve damage on the left side of my neck. This is where my brick sized growth was. It was so big that all the muscle and nerves were incased with the growth. It also locked my jaw so I was on liquid food for a few months. By the end of the day I feel that my head is just far to heavy for my body ;) I was given a set of exercises and these are helping and I notice that the more I exercise the less painkillers I use.

I am coming to the end of a 7 week course at my local Maggie's and last week a Macmillan Nurse Consultant (Oncology) was dealing with post treatment challenges.... we have Breast, Throat and Cervical patients and at the end of the afternoon the nurse openly acknowledged that "the SCT process can be one of the most demanding medical journeys someone can ever embark on........ but the rewards can eventually blur the edges of the memories of the actual journey taken"

My Head SCT Consultant likened the physical process of treatment (I had Radiotherapist, Chemo and 2 SCTs) as going through a boxing match and running a marathon every day I was in hospital.

Take heart, you are on the long road to recovery........ however long that may be. But don't get under pressure to over do it until you get to the point of confidence in your abilities. 

Hello I'm new to this and probably typing this jn the wrong place.  It's supposed to be a message to 'Jeff' - Jeff Im in exactly the same position. I had hoped to be feeling normal four weeks into remission but I feel as if Ive got flu the whole time. Im unable to sleep at night, have back pain which Cocodamol doesnt seem to do anything for - only made me itch! I went to the theatre with a friend but had to leave at the i terval cos I felt so awful and nearly fainted on the way to the car park. So I share your pain!! Keep going abd God bless - Annie Iwl

Hi Annie

Many thanks for your post , in a perverted type of way it's nice to know I'm not the only one with these issues . I'm unsure as to your type of condition but I have multiple myeloma ( which you may also have ) . I had a terrible time through my SCT and it took what seemed for ever to recover somewhat . It is obviously fantastic that we are in remission, however its terribly difficult to try and explain to your loved ones that you still have issues , as remission to most non cancer sufferers means cured ! , and all should be back to normal . As you are acutely aware this is not the case . With MM being a currently incurable desease , every little ache or pain makes me worry all the more . 

Just as a side note , I was chatting with someone the other day who is still suffering the niggles even after 18 yrs . Let's hope this isn't for us . 

Been to GP's this morning and he has prescribed Nitol 50mG's to help with the sleeping , could have gone down the tramadol route but I dislike anything that can become dependent . Movalat gel for my back pain when needed and I am already on quite strong co-codomol. Also strangely he has told me to eat about 3 bananas a day as they are full of vitamins and in particular potassium which he says will help with any constipation and the aching limbs . 

Anyway that's enough of the war and piece . I do hope you start to feel human again soon , at least we are still here for now . 

God bless you on your journey. 

Anytime you want to chat or get something off your chest feel free to drop me a PM or on the open chat . I'm here for everyone as they have been for me 

Ciao for now 

Jeff x

Bananas are fantastic Jeff.

They also help prevent cramps - I used to get them a lot in my legs (cramps, not bananas)  - and they help reduce queasy feelings though I'll admit I know that from being on boats, not from chemo-induced nausea or anything particularly relevant.

I wanted to comment on your contact with the side-effects after 18 years. Perversely - as you might say - I wonder if they could ever have imagined they'd still go be fighting Myeloma nearly 2 decades later. 

Hi Jeff - yes - same ad you - Multiple Myaloma.16 weeks of an injection called Velcade and pills - cyclophosphomide ad dexamethazone. Very interested to see what you are taking for back pain - mine extends to my ribs as well. Taking a sleeping pill for first time tonight -zopicline. So nice to talk to someone in same poition as me. Do keep in touch. Hang in there, Annie

Hi Barb

I was just trying to say that this desease  can effect us for a very long time and perhaps I shouldn't moan so much . Sorry if you took offence to this . 

Stay well 

Kindest Regards

Jeff x

Hi Jeff

I just re-read the posts and I have no idea why you might have thought I might have taken offence. Absolutely not at all. Actually I'm a bit baffled.

Hi Annie

Yes I was on Velcade , Tholidomide ,and Dex . This was before my SCT . Cyclophosphamide was given to kill m cells during or just before SCT . 

The pains I have also are in my rib cage area . I know this is a personal question but do you suffer from constipation . I know just after my SCT I was taking co-codomol which bungs you up and this can be extremely painful . Just a thought . 

Yes I am back on cocodomol and oramorph liquid for the pain . Also take an anti sickness in the morning . 

Once a month I visit my clinic for Zometa injection . This as you probably know strengthens the bones but I do suffer a lot for a couple of days after . 

Anyway keep as well as you can and keep posting . If nothing else it reminds us we are not alone . 

Jeff x

Hi Barb 

I've obviously read your post and interperated it in the wrong way . Sorry . All good 

Jeff x

Hello again Jeff - sorry to be dim but what does SCT stand for? My guess is someting - chemo therapy? In answer to your question- yes, constipation is a problem but I'm coping with the aid of prune jioce (ew) and mustard pickle.! An oddity of life at present is that the soles of my feet feel as if I have pieces of paper attached to them....mystifying.  My bigger problem is depression which I'm finding very hard to cope with. Of course it's natural when you are diagnosed with an incurable disease but when linked with lonliness - sorry to sound pathetic - it can be crushing. I have the dog to talk to but he doesnt say much. I had planned when told of my remission to 'get out there' and join all sorts of clubs but at the moment, 4 weeks into remission, I just feel too ill to do anything. I'm happy for you that you have a partner.. Do get in touch again if and when you have the time. Onward and upward! Annie