[davidainsdaleParticipant]

Hello Mervyn

Good luck with your stem cell transplant.

I am now 15 months on from mine which I had in Liverpool and am doing well. I took in a radio with headphones,books and crosswords which kept me busy. You will find that the nursing and support staff are in every couple of hours day and night to keep an eye on things so you won’t get bored. I found that it was very frustrating being hooked up constantly to the drip line trolley especially when showering and going to the loo in a hurry, the wheels always seemed to be pointing the wrong way! I was up and dressed every day but on a couple of days half way through you are likely to feel pretty tired.

The advice to suck ice lollies when having the melphalan worked well for me. Try and do everything you are told by the nursing staff since they know best, particularly where eating and drinking are concerned, often easier said than done. Contrary to what the papers often say I found the food and care to be first class under the circumstances. I was lucky in having a relatively straightforward time and was back home after 16 days – expect to feel tired for a few months afterwards. I was up and about soon afterwards at home but found that the mind was quite often more willing than the body.

Hope this helps. Good luck

David

[davidainsdaleParticipant]

Hello Emma
It is difficult enough having to deal with myeloma without having to worry about work as well. My experience ( again from a civil service background and as both a manager and employee) has been quite different.Part time working, working from home, flexible hours – nothing has been too much trouble for my employer who has been extremely supportive throughout. Employers need to be flexible when dealing with cases of ill health to distinguish between the genuine and those who play the system. I would suggest that you contact someone senior in HR ( SCS or one grade lower) to explain your situation and discuss your options.This may avoid dealing with rule book based middle managers. They will know what can be done within the system, eg career break, job share etc. It sounds as though the OHA report supports your case. If your are a member of a trade union they can also provide lots of advice and a local rep can attend meetings with you. It may be obvious but it is always a good idea to a record of meetings, emails, discussions and calls in case you need them in the future. Managers have alot of discretion, it is up to them how they choose to exercise it. If you are off work, it also helps to keep in touch with your line manager every few weeks, but they should be doing this anyway.

Hope this helps.

David

Good luck with the treatment.

David

[davidainsdaleParticipant]

Hello Jan and All

My Myeloma journey and experiences which started two ears ago have been very similar to those reports in the posts above. Perhaps it helps us to know that we are not alone in facing these challenges.

When ones mobility has been severely reduced for several months, unable to get out bed, get dressed etc then any gains are worthwhile and forever appreciated. It was a good 6 -9 months post diagnosis before I gained any sort of mobility ie getting in and out of the car for example.

I would just add that my consultant said that my back muscles would gradually compensate for the spinal damage and for this reason I am never sure just how much exercise we should be doing to make the back muscles work and strengthen. Physiotherapy might be one option but this has never been offered to me post diagnosis. I have found that trying to keep busy around the house and garden, combined with a good dose of common sense have had beneficial effects. Also walking with the aid of Nordic poles has helped the road to recovery.

Hope this helps.

David

[davidainsdaleParticipant]

Hi

Sorry to hear that your dad had joined the Myeloma club.

His problems sound similar to my experience,but they do say everyone is different. My Myeloma when initially diagnosed was at a pp of 54, this caused spinal lesions and compression at the T7 vertebra causing a loss of about 4 inches in my height. I was in alot of pain ( agony ) for the first six months caused by what I think they called a plasmacytosis tumour pressing on the spinal cord. I was more or less in a wheelchair and couldn’t walk. This was picked up by an MRI scan. 10 sessions of radiotheraphy and the CTD gradually reduced the pain. Two years on and much improved, just returned from holiday in Dublin which at one point I thought I would never do except in my wildest dreams, so there is hope.

Hoping your dad has a speedy return to good health.

David

[davidainsdaleParticipant]

Hi Leanne

Sorry to hear that your mum is having a rough time at the moment with the treatment. They do say that everyone is different and if in any doubt to consult the experts.

I had a lot of fluid retention whilst on the CTD regime, swollen ankles,legs, tummy and a puffy face. Coincidentally I had my eyesight tested for new reading glasses and the optician said that I had high pressure in my eyeballs. I checked this out with my consultant who said that it was most likely the CTD and once I had finished the course of tablets things did settle down fairly quickly, but it was some months before I felt all the fluid had gone from my system. Although it was difficult for me, due to spinal damage caused by the myeloma, I found that walking did help to get my body back going again.

Hope this helps and that your mum starts to feel better.

David

[davidainsdaleParticipant]

Hi Val

This is my first post on the Discussion Forum since my diagnosis of Myeloma in March 2013.

I was pretty much wheelchair-bound and immobile for much of 2013 due to a cytoplasma in the T7/T8 spinal vertebra. Like your husband, I had radiotheraphy (at Clatterbridge) which helped reduced the pain and then on to CTD. As you may know there are various treatment plans for CTD, I was on the most aggresive which meant taking 20 dexi tablets on Days 1-4 and Days 12-15 along with a host of other medication.

Lots of side effects including swollen feet, ankles, face and abdomen. This did eventually disappear but in my case it was over 12 months, exercise eg walking seemed to help. The other main side effect was muscle weakness and by the end of Cycle 6 I was pretty worn out. That all said, my pp level came down from a starting level of 54 to about 2.8. I had a Stem Cell Transplant 11 months ago and am in remission.

During the course of all this I lost about 4 inches in height and put the beer belly down to the fact that my insides have been squashed. Am now able to walk a couple of miles and do most jobs around the house with common sense not to do to much. I am very grateful for the treatment and improved quality of life.

Hope this helps.

David

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