[mojoParticipant]

Sorry Jules. meant to add that I will  use carers leave and annual leave, but carers leave is limited. x

[rebeccaRParticipant]

Hi Jules, Obviously it depends how your husband is but after the transplant and say the first week if all goes well he should be fine on his own. I had mine nearly 2 years ago (at 52yrs)and my husband had to work – I became ill with one thing and another but he made me breakfast and I could potter during the day and he made the dinner. If I hadn’t been unlucky with infection and bad S&D when I came out I would have been fine, except initially for cooking. I found it easy to lay on the setter and have drinks fetched etc but I could, and did, do it for myself quite easily when he was at work. We are more robust than you think and it really helps the recovery process to be up and about the house and get on with things. As for visits because of my daughter and her needs and the long distance hospital Iwas in my husband visited every few days only- we kept in touch by phone a lot – much easier than the long travel and I felt better knowing he was at home with my daughter. When he did come I didn’t really want long visits as I felt pretty crap/nauseous all the time so don’t feel you have to be there all the time – you can Skype as well. I had mine over xmas so the fear of bringing in germs/bugs was quite tough so keeping visitors minimal is worth considering now we are starting the cough/cold season. My husband felt quite stressed over this when he did visit. What I would say to you is don’t underestimate the impact this time will have on you it can be quite harrowing watching a loved one go through this – might even be worse than having it done! I forgot it all very quickly as I recovered but he still seems traumatised by the whole episode ( but I was iller than I should have been). So don’t push yourself to the limit – have time off visits and take a breather – at some stages he will probably hardly notice due to tiredness and being wrapped up in his own little battle. It is really important you consider your own needs and make allowances for them as you need to be the strong now for a while and you can’t do that if you are run ragged. I can’t stress how important it is for you to make some time for yourself so you can be the strong cheery one – you will be the one holding it all together – so no pressure there! A long time after the SCt my husband – who had to work and, in fact, I wanted him to for some respite for him also – said he used to dread coming home on a night and almost drove slower! because I was so “not me” during this time. It’s a hard time and I would stress that when I cam home after about 2-3 days I would have been fine if I had not had a run of bad luck. You say your husband is having an SCT even though his cytogenics are poor? Well I have high risk cytogenics (and rubbish kidneys now which made SCT much riskier) and I was offered one because of the poor cytogenics as SCT should help deepen the response and hopefully give a much longer remission. I am in remission still, no maintenance drugs, 2 yrs at xmas. When dealing with poor cytogenics please remember you are not a statistic, not the “average” person, your MM is individual to your husband and poor cytogenics do not necessarily mean poor prognosis – it is still highly individual. Good luck with it all and get plenty of treats in before it all begins.

Kind regards, Rebecca

PS Only posting at this time of the night as had too much wine and food earlier and now paying the price for it!

[mojoParticipant]

Hi Rebecca,

Your post has been very informative, helpful and inspirational, thank you. As soon as David surfaces from his snooze, i’ll let him see it. Although I know everyone is different, having input from other carers and survivors too, is a great help :-).

Tomorrow morning I’m off to do a wee abseil down the Forth Rail Bridge to raise some funds for Myeloma UK…will be a challenge, but am looking forward to it.

All the best , Mojo

[jules33Participant]

Hi, Rebecca, Mojo & Annalyn

thank you for taking the time to share your experiences it’s really useful to have your honest opinions & personal experiences. The info in the fact sheets doesn’t really cover the carer at all & yet there is an expectation that you will be there to do it :- my real concerns as to what if you can’t not won’t but can’t  have been allayed by our conversation .

Mojo, Unfortunately my Employer has capped sick pay at 60 days in a rolling 12 month period before they remove elements of my pay . I know this as due to Marks condition on diagnoses & the effect this had on us all I was off for 2 months or 61 days my pay packet this month reflected that ! We will see what the Consultant has to say in November at the end of the 6th cycle.

Mojo, please keep us posted as to how it all goes for David I wish you the very best for a good SCT.  Abseil amazing puts my bake sale to shame. Well done you.

Thank you all again , Jules

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