[PerkymiteParticipant]

Hi all, I think I have now fully recovered from the SCT I had in December.

The last little niggle, which was a very sensitive right hand rear of my lower and upper jaw, has now gone and I can chew anything again. The NP in my feet (spongy foot) has also eased off. So last week I started on a dailey 1.5 mile speed walk. I use the term ?speed walk? very loosely but I managed 23 mins for the measured distance. I intend to up it to 3 miles when I have reduced my time for one lap to around 18 mins.

I have always enjoyed keep fit so it is so nice to be all hot and sweaty again.

Kindest regards ? vasbyte

David

[BADGERParticipant]

Hi David

I have exercised since I finished CDT it always makes me feel better my husband Geoff and I usually walk about three miles every day it takes us about an hour not rushing then! we swim some times but I am a bit worried about infections from the public pool any way Mc Millian have said just this last week all cancer suffers should do some exercise each day do you still ride your bike:-P

Keep well Jo

[DaiCroParticipant]

I have become acclimatised to my lack of mobility (bone damage and PN) and tend to think of exercise and general lifestyles as pre-mm and post-mm… the first a memory the second a reality and that is fine… I have no big issues or traumas over the matter… but I do miss the actual walking… the scenery that changed with every corner, the people I'd bump into, the freshness of ideas plucked from the open air.

Morris The Dog [i]TM[/i] died this early spring… I had to fight myself to stop feeling incredibly guilty about his lack of proper exercise and what I would call our 'Doodlebug' walks… but now he is gone and so has the guilt, which makes it easier for me to treat serious exercise as a memory. The hospital has an exercise group and I was tested and sent along… one session knocked me off my feet for 3 weeks, no kidding… I never went back… whatever measures they use none were appropriate for an MM'er with laodsabone damage.

Mind you, they produced a nice infosheet with cartoons of the exercises and that has proved useful. 😀

Dai.

[PerkymiteParticipant]

At the present time I have not got the bike out. It is planned for the future. I am banned from doing any exercise which puts undue pressure on my bones such as Gym work and running are out. My wife is concerned I will fall off the bike 😉

I do find my, now daily, walk very therapeutic and it gives me a small sense of ?I am in charge?, I know it is an illusion but you know what I mean I am sure.

Kindest regards ? vasbyte

David

[BADGERParticipant]

I do know what you mean I always feel good after a walk and knowing that I can do it I will do it it does give you small sense of I am in charge.
I also am not allowed to run so it just as well I have never liked it anyway always a tortoise never the Hare

Keep well Love Jo

[GillParticipant]

Good luck to all of you that can still do some excercise Stephen is hoping that after another visit for radiotherapy , he will be able to once more walk the dogs, even if it is just round the block rather than the 4 or so miles he did after his first transplant.

He has been most unwell since the second SCT. I am hoping it is just taking longer this time. One very worrying thing is the lump that has appeared on his neck ( just about behind his ear and half way down his neck, roughly where our mothers' always felt to "see" if we had mumps) has anyone else had that? He is due to see the oncologist next Tuesday.

Gillxxx

[DaiCroParticipant]

Hi Gill & Stephen,

I have been following Stephen's progress forever… but with particular interest since he struggled to get to his 2nd SCT. Talking to others (mainly at our DayCase Unit) it seems that the 2nd SCT is often rougher (i.e. not as smooth) than the 1st and takes much longer to recover from. I hope this is the case with Stephen.

The lump doesn't sound encouraging… but to be fair Gill it is in a popular place for general lumps and bumps to appear. Seeing as most MM tumours are associated with bone there is a fair chance that Stephen's lump is 'something other' and not necessarily evil in nature. I went through a phase where I used to get run down and I often got 'swollen glands' that I swore were tumours but turned out to be no more than swellings (one of which had turned quite hard simply because I couldn't/didn't leave it alone). I really hope that this is of a similar ilk.

I cannot exercise at the moment… as a matter of fact I am in a poor physical condition but I can pin this state of affairs to being on Velcade… my swollen leg notwithstanding I just do not have either the strength or energy to walk very far at all… at best fifty yards or so before I need to sit down. I can't wait for Velcade to be finally over so I can recover and get something near to what I was like up until April – which wasn't brilliant then… but a hundredfold better than now.

All the best to you both.

Dai.

[MinParticipant]

Hi
Sorry to hear of Stevens problems here is hoping the radio therapy gets him back on his feet. I can understand how worried you are by the lump too and I am sure they will calm your mind on Tuesday. Good Luck to you both
Peters second transplant is becoming very unpleasant compared to his 1st. In our case we are actually hope full that this is a good sign.(How sad is that) But with only 5 months from the 1st one and 5 cycles of velcade and revlamid each failing ;the fact that he has classic symptoms now that he didn't have with his 1st one that this is a good sign.
Velcade was the pits for Peter and Revlmd not much better though they were both good to start with.
He has the sore throat and gums dreadful diarrhoea constant sickness and feels generally like sh***
Had platelets today two bags of blood for tomorrow followed by the new GCSF injection Neulasta!
1st time had nothing, and no support needed so perhaps explains why it didn't work,
Hey ho, Roll on the Bank Holiday so we can all cheer up in the rain. Bet you have sunshine 'down south' hmmmm
Min

[PerkymiteParticipant]

In some ways I am pleased that I have been told that only one SCT for me. I fully appreciate that if I was younger, 68 now, I would jump at the chance probably but it seems a very unpleasant experience. My SCT in Nov/Dec went very well and apart from a doggy 24hours a walk in the park. I wish both Peter and Steven a speedy recovery ? VASBYTE.

My walk time is down one minute to 22 mins, from 23.5 mins, so I am getting somewhere I think

Kindest regards ? vasbyte

David

[BADGERParticipant]

Hi Gill and Stephen

I am so sorry Stephen is still not feeling so well lets hope he is soon up and walking like he did sfter the first SCT
GOOD lUCK
Regards jO

[Author]

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