Hi Eve,
Ah, I know many of you on here have much more experienced of myeloma than me, I was just trying to be positive for you and slim but now understand regarding the 2nd SCT.
I am pleased that just sharing this has helped, the support found here is just brilliant.
My thoughts are with both Slim and you,
Love Babs
Hi Eve and Slim,
This is the first time I have used private messaging on here, wasn't sure how it works as am quite computer phobic, it is quite easy though. Just went in to my own profile and saw the one I sent to you, having now looked there is a box which will show me when you reply to me, will be interesting to see if I am somehow sent message to tell me I have message waiting to be read!!
So sorry to hear Slim's news, this is what I dread and crosses my mind almost daily,especially if I have new ache or pain and last night my husband admitted to me that he thinks like this too but he doesn't say much and only admitted this when I pushed him to tell me!!
I see from here that Jet has had two SCT and is now almost 1 year clear after her second one, so there is still hope after the return of the myeloma.
Love Babs
Hi Jean,
It is early days after the SCT , I remember after mine I had no energy at all and even to walk around the room in the hospital was an effort. The physio's came daily and told me what exercises to do but to be honest I tried but it was just so exhausting!!!!! I remember the first time they walked me to the end of the corridor, I had to sit down and ask for a drink,( felt brilliant to be out of the cell of confinement though!!! )
Frank will improve but the treatment is severe and takes a lot out of the patient. Yes its true before this disease hits most of us we were fit and healthy which makes it all the worse.
The light will get brighter, just like a dimmer switch it takes a little time.
Love Babs
Hi Eve,
yes bloods and assesments and Zometa every 4 weeks and consultant every 3 months, I have private messaged you on here the details, we may well meet up at some time.
I have already met up with some very old work collegues who we meet regularily as they have to go into canterbury every weekday for injections! He has lukhemia .
We had quiet but enjoyable Easter thank you, hope you both enjoyed it as best you could.
I have become friends with Tom on face book and now am enjoying pics of his grand children, we don't have any ourselves and so with both our daughters away this Easter it has been a very quiet one for us.
Love Babs
Hi All,
I feel good that I am able to put my current position re the MM on here, this site has helped me and so I hope I can help others too.
Since reading then joining this site I have soaked up all the positives which are such a different picture to the one which was painted to us at the time of diagnosis, like many others we first made the mistake of googling MM, now we know better, this site is much more up to date.
I know not everyone has been as lucky as me but am also aware there are many on here who are years ahead of me and still here to tell the tale.
I love the way some of you end their comments, every day is a gift and onwards and upwards immeadiately come to mind.
Love Babs
Hi Jane,
Your post has brought back memories of this time for me, like you had to have pregnancy test at 53…….I was so ill at that time said it would be impossible but still had to get it done anyway!!!!! had test which confirmed I was pre menopausal and so had to have a test every time if I remember correctly for the next five treatments. Do remember having joke with my consultant (who found this part of the discussion quite embarressing)that he must prefer the male mm sufferers as he doesn't have to go through this with them!!!! made the nurse smile at the time I seem to recall! ha ha 🙂
Don't have to have them now though as the chemo prior to stem cell transplant put pay to all that, have now had blood test which confirms I am now post menopausal.
Happy Easter to you and all here on forum.
Love Babs
Thanks Helen,
wow 3000 registered members.
I went to a support group meeting last wednesday and met just 2 fellow MM sufferers who said they read and look at this site but do not participate and so would not I presume have registered, I wonder how many others like them there are too!!
Considering on diagnosis I was told this is a rare cancer I am shocked at just how many are on here alone !
Hope all is going well for you Helen.
Love Babs
Hi Gill,
Its a good point you have made here, I also wonder just how many members we have on here! I know like I did, a lot of people read and watch before joining in, some I suspect may never join the forum to which we wish we never had to read or join!
Tom says you have a birthday soon, so do I, Infact I have 2 just around the corner – 22nd March the first birthday of my SCT and the 25th my actual birthday, what a one I had last year!!!!!!!!
I am in my early fifties and have 2 beautiful grown up daughters and am so saddened by the amount of younger people now being diagnosed with MM, I hope they soon find the causes and of course a cure.
Babs
Thank you Tom and Eve,
You managed to make me laugh after being very sad reading of the loss of Tinkerbell.
This site is everything to me,imformative, funny, sad, helpful to know the way I am sometimes feeling, be it good or bad is part of the MM journey.
I went with my husband the other evening to a support group where for the first time I met others face to face who know exactly how I feel and the journey we have all been through. I only wish there was such a group nearer to me, (we drove an hour and fifteen minutes to get to the meeting.)
As for the elephant in the room, I want to talk but find others don't!
I am thankful that I am now almost a year post SCT, my 1st birthday being 22nd March 2013. Like others have said, friends comment on how well I look, well compared to July 2011 when I was diagnosed and almost died of organ failure I must look much better!:-)
But although I am very positive I do sometimes find myself crying real tears quietly to myself, like today sitting in Waitrose cafe while my hubby ordered our lunch, then I wiped away the tears and smiled for him when he came over to me with our order.
Eve, I too had a lady come over to me last wednesday at the day centre to play with and comment on my lovely head of very curly hair ! My eyebrows never really came back so I now have to pencil them in!!!same with my leg hairs – except I don't pencil them in, ha ha :-)!!! Strange how the chemo prior to SCT has left us.
As Andy said – everyday is a gift.
Babs
P.S.
I must update my photo as current one on here was taken way back in the summer ! 🙂
Babs
Hi Eve,
I have a good friend who had a kidney transplant and her DLA stopped after the transplant because she was then deemed to be able to manage again as no longer having to have dialisis,also amputees loose it after getting a replacement limb, our STC does not do the same for us, most of MM sufferers who receive DLA get it due to the bone damage caused by our condition and this will not change no matter how many SCT's we have!!!!.
The point they made on the programme was that the woman walked about for 80 minutes, also sometimes dragging a large suitcase on wheels and walking her large dog even though she said she was dosed up on painkillers she was filmed walking perfectly normally,even walking "AT EASE" up and down stairs, they were paying her her DLA because she had said she could not walk a mere 50 yards they said. She had not told them that taking strong medication enabled her to do these things.
I am sure Slim and many of our fellow sufferers would love taking strong painkillers to enable us to walk around crufts pulling a large suitcase and walking a large dog but sadly it would not make that much difference to us.
I have checked my paperwork and it mentions transplants but not specifically SCT, I would argue that although it is called a transplant it is not the same as having a useless kidney replaced with a good one and allowing life after dialasis!
Perhaps there is someone here on this site that can advise us all on this point as It is bad enough having to get used to being diagnosed with terminal cancer, receiving benefits and managing on the small amount they pay but now we are all worried about getting criminal records and having our benefits reduced !
Love Babs
Hi Eve,
just watched the programme on catch up, very interesting.
Love Babs
Hi Ann and Pete,
I too had trouble swallowing after my SCT, the pineapple juice definately helped, and like Slim I also found drinking cold milk helped and I was given oramorph just before meals and as for the tablets, yes I too had trouble especially 1 little one which I took 3 times a day and hated because it always seemed to stick in my throat, after being there for the 5 weeks and 1 day I was released with tablets to take home- including the horrible little ones….which I then read were to be dissolved in water then taken!!!!!!
As Tom says the SCT is do able but no getting away from it , it isn't easy, and as Eve says take in old clothes, there was one night when I didn't get to the toilet in time and had no energy to deal with myself so had to pull the red cord, the lovely nurse came and sorted me out but I just sat there crying as felt so humiliated and helpless, BUT the nurse was lovely and assured me this was all normal to them and part of the SCT road.(Sorry if this is too grafic)
Pete you can get through this and Ann you will too but it is equally hard for the loved ones watching us and feeling helpless I am sure.
Love to you both Babs
Helen R,
The limit for savings is currently £16,000 for means tested benefits, the first £6,000 is totally disregarded and anything above to the limit is then taken into account,
Like wise you can get contribution based ESA and if you have a occupational pension this is taken into account too, the first £85 is disregarded then half the remainder is taken into account so reducing your benefit.
For income based ESA all of your occupational pension is taken into account so reducing your benefit,
As for planning for the future, there is no real answer to this.My husband and I had just gone through 9 years of overpaying our mortgage and so leaving ourselves short and cutting back on holidays etc with the plan to then salt away the equivalent of the mortgage money into savings for our retirement, then along came MM to pull the rug out from under us!!!!so much for all our plans, never saw this coming !!!!
Helen,
I am so sorry to hear your news, I have only been contributing to this site for a short time but feel like you are all part of our large MM family.
I hope my contributions are helpful and not too depressing, unfortunatley I have since 1991 had severe depression and more recently SAD, this has been in check until just recently but the long cold winter and lack of sunlight is affecting me quite badly at this time!
Love Babs.
Hi Tom,
As everyone has said DLA can be given to us MM sufferers to aid our mobility and care needs, I too on the outside look normal and when sitting in the car can be taken for person with normal mobility, however it only has to be a little too cold and my back aches with pain, also I can walk but only short distances then my back aches so I am more often found sitting on seats with the elderly ! I am only 54 years old.
I cannot do normal housework, to empty the dishwasher takes me 4 seperate attempts, normal hand washing up also takes me seperate attempts with me having to sit and rest up after just few minutes of standing at the sink! I like Dai can now dress myself but am shattered after doing this but I cannot put on my own socks or tie my shoelaces or zip up my boots, my husband has also had to learn how to help me put on tights!!!
When shopping we always use a trolley as this helps me walk farther, but I cannot pack the bags or put the bags into the boot of the car, different parts of the house/kitchen are now out of my reach as I cannot bend down and am now too short (as now 3 inches shorter myself due to my bone damaage caused by the myeloma ) to reach high shelves.
I cannot make the bed and even do light dusting will give me severe back pain,I can iron at most 5 items but then am in agony, also cannot take anything out of the oven or lift pans off the hob, I have now learnt to rest and how to ease it, but sitting too long also not good!!!!
My consultant told my employer that due to my bone dammage I will never be able to work again!!!Luckily ATOS listened to him and so I was able to take my company pension early and we talked for great length of time but my husband and I decided to take larger lump sum now and smaller pension so we would have funds to make the most of our time left together. My husband is now my full time carer and receives carers allowance which is most pitiful amount for what he does but gives us quality time together, we have learnt to manage on what is now less than half out joint working earnings, bad health like we all have is very hard to manage but we have no choice do we, My husband often talks of finding part time work but it needs to be flexible as one day I can drive and the next day I cannot, also need him to take me to hospital appointments which continue to be regular. If I did not have my husband to help me I would have to employ a cleaner and have meals delivered to me or employ a full time housekeeper!
I attend my local hospice for support and they help me to do arts I had not thought I could do,offer relaxation classes, complementary treatments and soooo much more, hospices are not only for the near to death as most people think, your local GP/Dr just needs to completed the consent form to enable you to apply for their help.
We have so much which should help us , the hard thing is actually knowing where to start!
Good luck Tom,
Love Babs
