[christinepughParticipant]

Hi All

My husband Chris is on Day 42 following Auto SCT. Having a tough time in terms of getting platelets and red blood cells to kick start. He's been back to the hopsital twice a week for the last three weeks and needed either platelets or blood each time. Yesterday was the first time he didnt need anything. However he has had a BMB early as the consultant feels that the myeloma is still there and possibly dominating the good bone marrow. He left hospital with flu so that wouldn't have helped. His pp's were 20 prior to sct after three different forms of chemo starting March 2012, pp was 35 started on Myeloma X1 revlamid plateaud after 3 cycles, then velcade worked great but stopped after 3 cycles due to horrendous peripheral neuropathy ( even with velcade sub cut) then PAD for 3 weeks. So he took a hammering prior to SCT it's fair to say but worked pretty much up to the PN kicking in Dec 2012.
It's by far the worst thing in the whole process and although it's much much better than it was in December it will be the thing preventing him from returning to work. he's a barber so need to stand for long periods of time. He is on 3 x 300 of Pregablin daily which has worked but he is going to reduce that to 600 next week to see if there is any difference. His feet are numb which is completely manageable but the tenderness in the soles of his feet are the killer. The worst thing you could take away from Chris is his fitness and it is this that is the hardest thing for him to cope with.
I feel we have had no luck at all along the way, drugs not working and now not recovering well from the SCT. He absolutely hates being at home and says he feels worthless. He was a workaholic and loved his job.
Chris does not come on any of the forums, despite me saying it would be good. As much as I try to understand how he is feeling, only people in his situation really do.
Anyway rant over, I hope this finds you all well and positive.

Christine XX

[DaiCroParticipant]

[quote]His feet are numb which is completely manageable but the tenderness in the soles of his feet are the killer. The worst thing you could take away from Chris is his fitness and it is this that is the hardest thing for him to cope with.

I feel we have had no luck at all along the way, drugs not working and now not recovering well from the SCT. He absolutely hates being at home and says he feels worthless. He was a workaholic and loved his job.[/quote]

Hi Christine,

There is no doubt that the both of you have had a rough time of it since diagnosis. It may well be that Chris will find a way to return to work in the future with some sort of compromise regarding standing to do his job… perhaps a tall stool that allows for a mix of standing and sitting. The most important word in that last sentence being 'compromise'. 😐

Nearly every single person with MM has to learn to compromise with what was before and is now…some things can be reclaimed but there are some factors that simply cannot be overcome and reclaimed. Chris's PN, especially his tender soles, will make standing for hours on end a virtual impossibility but he may, as I stated earlier, be able to compromise, both on the hours worked and the manner and style of his working conditions. 🙂

At some time he will have to accept Chris pre-MM and Chris post-MM. He will be able to move forward with a positive state of mind and body once he has accepted that things will never be the same again but this doesn't mean he is 'worthless'… that is insulting to himself and to those who are willing to change almost every aspect of their lives in order to help him be the 'new Chris'. 🙂

As I see it he needs to sit down, preferably with you, and look at his skills, look at the things that up to now may have been deemed to be 'hobbies' or 'interests' and see what he feels about making them viable commercial outlets. Perhaps a room at home that can be converted into a home 'Barbershop' where customers come to him etc., – I'm just thinking aloud but Chris is the one who has to compromise and settle on a new world of work and wonder. 😎

I wish you both well in your endeavours and with dealing with the dreaded PN of MM. 🙂

Dai.

[christinepughParticipant]

Dai

Thank you for the advice. We do have plan B which is to erect a "Man Cave" at the bottom of the garden where Chris would invite select customers in to do barbering in one half and in the other half he would be restoring/buying/selling the second love of his life his beloved motorbikes. He has spent the last fifteen years building up a very successful business that he loves so it's really tough to let it go when you are only 47. This period is definitely the worst for him as he has been so positive but after so many kicks its harder to pick yourself up after each one.

Christine x

[EvaParticipant]

Dear Christine,

I didn't have peripheral neuropathy, but I needed infusions of platelets and I had a rough start: left the hospital after the ASCT, essentially needing a nappy, with neutrophils of 0.2, and only able to walk a few steps. After I made the Everest climb to the top flat we lived in in Edinburgh I was well and truly pooped. It's amazing though how after three months my energies returned and I could walk long distances and do many things. As I've pointed out before, I had a short sleep in the afternoons sometimes.

I could never go back to my work, even though I had enough fitness for some work. Secondary teaching is not just that- there are often great levels of personal assertiveness needed. In many classes there can be groups of pupils who are a bit immature, and I've certainly had groups in which some of the pupils had mental health issues and couldn't function with their peers. Also many hours of work on most nights correcting and filling in things as well as very early starts. Perhaps a return to being a barber could be a bit more gentle( even part-time).

In the meantime, I recommend you check out the Dana Farber Protocol for peripheral neuropathy on the net. Chris should give himself gradually increasing physical challenges once his onc agrees. Perhaps now is not the time to push too hard until he gets some more results. Light use of an exercise bike, a little work-out on the spot- bone damage permitting. I imagine that part of what Chris is missing is random interactions with the public when he was at work, as well as contact with regulars. This is an enormous adjustment to make and some kind of achievable occasional replacement activities might need to be sought once he's recovered. I have never solved this problem properly: tutoring would have required being up to speed on possibly an entire new course. Where I live in the Highlands, most teachers feel very uncomfortable with have a tutor seeing one of their pupils in case their own teaching style is assessed too closely. Even though I was a Maths/English/Learning Support teacher, I've had to find totally new directions to go in. I've volunteered to do a photo shoot with about one person a month, taking portraits of them. This has been high pressure work which is part of what I was probably missing. I then taught myself to produce very high quality work on my printer at home,in order to give the subject a portfolio, using special archival paper. The advantage of this is that I can work when I have a burst of energy. This has had spin-offs into different kinds of art work.

Christine, can you think of some skills Chris can be asked to develop? Of course, his career skills are always in demand!

Best of luck,
Eva

[christinepughParticipant]

Hi Eva

Thanks for the advice. I looked on the Dana Farber website and am going to order the recommendations for PN, will be interesting to see what happens. He is exercising walking, cycling etc so just got to carry on. He is qualified to teach hairdressing at FE level so thats one thing he may look at doing on a part-time basis.

We will get there I'm sure, just some days the mountain to climb seems higher than other days.

Christine x

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