Hi Dawn, just been thinking about the whole work issue as we are the same age and I have a teen daughter – I would like to add that whilst giving up work is difficult on many levels – particularly psychologically – as time is of an "unknown" quantity I work only to live (a bit better). Family takes priority and I will play the system to ensure this remains so ie. I have been allowed to take all summer off on hols as my Dr kindly extended a phased return to work due to chemo. I know I will not be working any other summer also – regardless of how I achieve this. Life is too precious to devote it to work if a family will be at home. I had a fantastic job once and took redundancy as soon as I could when I started a family and this now gives me great comfort that I was at home and enjoyed watching my daughter grow. I have only worked around her and now will do so even more protectively – I don't care if it disrupts the smooth flow of business or incurs overtime costs in the great scheme of things it is of little consequence only my relationship with my family matters.
Hi Dawn, I had a long period off when diagnosed and went back to work whilst on velcade/dex. I was working a 12hr shift pattern which I couldn't do due to tiredness and other kidney complications so was offered the chance to try different work patterns on the basis of the Dr stating a phased return to work. I knew I could not do 12hr anymore as this involved nights but it was made quite clear once the phased return to work period was over I would have to do it/leave/move jobs – I moved to a different team, 6hr days etc. which I don't like and have taken quite a drop in money. Every conversation I have had ends with a "and if you decide to leave we'll be sorry to lose your skills but understand…". I only get the Co. sick pay – no exceptions due to condition – "everyone has be treated the same". It has also been stressed that whilst I have a good sick record and this illness is treated as "one time" should I break a finger, for example, or have any unrelated MM sickness I will be taken through the disciplinary route. I have yet to mention I'll be going through the SCT process in the next few months! – mainly because my Manager never asks how I am and I know they see it as disruptive. I am 51yrs and remain only for the money/death benefits/a taste of normality.
I do know someone with cancer who was on SSP – causing a lot of unnecessary stress over money as his partner was struggling to cope/work – and HR arranged to come round after a few months off work and they thought he was going to be finished on ill health but was told at the meeting (whilst he was laid in bed with a drip in) that in light of his hard work and good work ethic they had rethought their decision and was handed a cheque for £xooo in back pay and is being paid full pay now – and what a difference that has made to their lives and spirit.
I know of someone else who was paid full pay throughout their leukaemia and BMT and they retained a co. car and free petrol which his wife used for hospital visits. When he returned back to work he found another job as soon as he could because his job had been spread out amongst a few people whilst he was off sick and he felt as though he didn't have the same position there!
These three Cos are large employers with good reputations.
Great news Christine, the fact that he is having a continued response so long after transplant is apparently a very good indicator of a longer term remission – there is an article on it on the Myloema Beacon.
Enjoy.
Rebecca
I agree with Eva re categories and would love to be able access such info and have peoples ratings of books etc. I am a lazy soul who devours information given to me but often find it hard to find my own sources and trust they are worth buying ,so much prefer to get books etc that others have found useful.
Have read all of Dawns recommendations and then passed them onto someone else with cancer.
My kidney function is very poor and another member has kindly/privately shared his research on kidney health/improvement. I had researched it but did not find the in depth detail I wanted and so have found his assistance invaluable – in promoting health and also because it makes me feel proactive. Sharing and caring is the name of the game.
Thanks Tom,
Love it when people post current research (I never seem to come across it on the net myself). I find it comforting that in say 10-20 yrs people who get it will get a much easier deal as it does concern me that my daughter may have genetic links – regardless of what they say. Am probably going down the SCT route – which I desperately want regardless of risks – but am sure in years to come they will see this as crude and barbaric (a bit like how we view medical practices in the middle ages) However, its all we've got at the moment and I will be grateful to get it.
Glad to hear your recovery is going well.
Stay well and keep posting please.
Rebecca
Hi Scott – that's fantastic news you must be so relieved. I was told, however, not to get too excited if creatnine levels improve initially as this can be because you have lost muscle during the hospital stay and if you are just laid about and not exercising the kidneys are not having to do as much work BUT I have read research that says many (can't remember % but it was good) attain a kidney improvement of 20% above what it was before SCT. Keep well
Rebecca
Hi Scott, Great to hear you're OK – know you had the added worry of the kidneys – have they come out unscathed? Looks like I'm heading down this route but have been told they never know if kidneys will be effected but deem it worth the risk (tho' when you're just advising it's easier said then done!)Hope everything works out well for you, sounds as though you're on the up
Rebecca
Tennis is also my passion – I'm not a really good player but play in a league (we never get promoted from the bottom division – always 2nd place) and of all the things to concern myself with it is my lack of tennis that I feel most gutted about the SCT process.That's why I wasso pleased velcade did not affect my energy and could play in the summer league – altho to be fair I have very little LCs but they have caused catastrophic damage which I am told is unusual. How soon after SCT were you able to have at least a knock about please?
Hi, thanks for that, I was just about to start the supplement route but think I will stick to doing it by diet alone now and juicing – my attitude to supplements was they cant hurt so why not but perhaps just diet is better.
Rebecca
Hi Christine, Just seen your post – hope you're feeling much better now – never heard of that much sickness but then everyones different – have you been harvested yet? I am going to start this route after the school hols and go to Jimmys for SCT – presume you're at Jimmys for the procedure?
Good luck
Rebecca
Hi Tom – just seen this post so belated congratulations to you both. You two have certainly had your share of bad luck but it looks like you've past the test and the gods are smiling down at you all the way now. I think you've learnt the greatest gift of all – to enjoy and treasure your lifes.
Hi John,
Glad to hear you're in remission and doing well – was always very impressed at how well you recovered from SCT and you believing it be a state of mind. Hope to be doing SCT soon and will hold you up as my role model. Keep well.
Rebecca
Hi Wendy – wow you did well delaying treatment with LCs so high – I have just done 8 cycles of velcade/dex due to kidney damage and I found it did not stop me doing anything – still played tennis/gym etc did not affect energy levels much- I think you'll find your LCs drop dramatically in 1st or 2nd cycle aiding your well being – am told velcade is one of best drugs for LCs. You have a hefty plan ahead and I remember you went to see Prof Cook at St James for a 2nd opinion – was this his view also? I ask because there has been some debate re SCTing me due to kidneys at e-gfr 22-23% so had an appointment to see prof Cook last week. Unfortunately he was on annual leave but his colleuge recommended not to hesitate and they would proceed SCT ASAP – was impressed with St james and they suggest if I stay at my small hospital to be referred for a 2nd opinion prior to future treatments as my hospital wouldn't be aware of all trals etc. Was impressed. Good luck on sunday and know you will be able to keep up all your sports durung your treatment. Rebecca
Hi, yes that would be good – didn't even know they had a support group at goole
Thanks for that – I suppose there is a much bigger debate with mine as I am well on my function at present and do I want to risk dialysis sooner rather than later? will let the prof decide. All I want is the "hope" of more time and treatment free and think I will risk them given the chance – what's life without hope eh? I know of 2 people who had living donor transplants – both in 30s and done in London – and their thoughts seemed to be that the transplant drugs/immunosuppressants actually helped the myloema keep at bay – but insufficient data to support this and I think they went ahead due to the age factor. I do think kidney function does improve a tad after SCT but apparently they have no way of knowing what it will do your kidneys – as they say everyone is different! Have been told by this sites nurse that the cut off point for transplant is 15 – 20 so I'm on the cusp as egfr is only an estimate and can be a few % out.
