Hi Eve,

I would welcome any input by the way of ideas, questions or experiences. They are asking for a short (I imagine 20 minutes) contribution on the topic of the 'Patients Experience'. Janet has been asking me about the practicalities of the day but I can tell her very little as I just don't know. I have been waiting on further…[Read more]

Hi Tina
Well done on that Windsurf, and always next time for the Scuba diving, am sure Patrick was Looking over you when you were Winsurfing and gung hoing over your new found hobby, take care of the toe and welcome home.

Hugs ((()))

Tom xxx

Hi Only me
Funny name to have LOL.:-)
Just to say sorry your mums having a bad time of it,cannot help you,but my best wishers go to you and your mum,Eve

Hi Onlyme sorry your mum had such a rocky start to her treatment , hopefully things will go more smoothly now . I had similiar problems in harvesting enough stemcells for a second harvest My local health authority refused to fund the Plerixafor injections and I was able to produce the bare minimum but enough to do the job . I was told that if…[Read more]

Hi Sarah
Bridget has just given you some very sound advice,so my advice to you is listen to what has been said.Apart from that welcome to your journey as a carer,ask away about anything you are not sure about,even if we cannot help you,you will have the support of everyone on this site.
Hi Bridget good to see you are posting again. Eve

Hi Sarah I would like to add my welcome too. You have been lots of good info about sct so far and I am sure you will have more specific questions nearer the time. You have probably realised myeloma is a very individual disease and as we all react differently its hard to predict each persons response The one thing that is the same for most of us…[Read more]

Hi Debs…

I was just wondering about the Revlimid maintenance therapy as you are recovering from your SCT. Does it have any side-effects? I would have thought you have enough on your plate without the complication of accessorised treatment. 😐

But hey!!! If it gives added value to your recovery by way of making it stronger and longer…[Read more]

Hi Only You,

I had a similar experience to your Mum…

I was given my dose of Cyclophosamide via a cannula in my hand, followed by my course of GCSF injections at the end of November 2009. I finally had my Hickman line inserted (on a Friday, with my harvest due to start on the following Tuesday) but I was back in that same evening with a…[Read more]

Hi Sarah

You are more than welcome and am sure what with the treatment getting better they are thinking of downgrading it from Terminal to severe so am happy with that 😎

I see you ask about work? well Henry I was told that I had to stay off work till my (think) my 100 day check up, then I was told I should stay off work (mine is heavy…[Read more]

Hi Roz

Sorry about your problem re Holiday's 🙁 is their no groups that you could join that help people with disability's to go on holiday,

Hope you can find a way as we all need a break from our own homes now and again

Love and Hugs ((())))

Tom xxxxx

Hi Sarah and Henry

Sory you had to join this Band of folk, but you have done the correct thingthe folk on here are a great help with words of comfort, advice and of course the well used "Cyber Hug"

I had 5 cycles of CTD leading up to my Transplant in Dec 2009.

The SCT was Ok, Not a walk in the park but OK, I found all the treatment Pain…[Read more]

Hi Everyone
First to Helen,make sure you do that trip.wonderful country,we spent three months there mainly to see family but did spend 3 weeks travelling in motorhome,from Christchurch to Auckland,one thing MM makes you realise is never put of doing things you want to do.:-)
Caro,hi have a friend in Hamilton,scouser who moved there years ago,its…[Read more]

Hi Gina

I am Pleased your Mum is in better spirits now and also pleased you have unlimited visiting to your Mum.

Good Luck for Monday and hope all moves go smooth.

Love and Hugs to you all (((()))

Tom xxx

Morning Glyn and Hubby

Gosh Glyn you were late in bed or an early riser looking at the time you posted 😀

Thanks for the Info on Hubby's route so far, he was lucky the Dr spotted it early as for the ups and down when in treatment think we all have that:-( always wondered why something they give you to make you better makes you Ill:-S but…[Read more]

thank you so much for your kind words. Mum was in better spirits today. we spoke to the nurse who said we can visit when we awnt which is a relief as we can spend more time with mum while she is in there. They are also trying to sort out an assessment for monday so we can get mum home as that is all that she wants now. I am in a better frame of…[Read more]

Hi Jo

Sorry to see your on the BIG Anti B's 🙁 but we know they will kick its A S S) (now lets see if i got away with that one Lol)

You will soon be better and forget all about the Anti B's

We are doing great just got a iccle cold of Baby Max 🙁 just hope i dont get his conjunctivitis :-/ but looking good so far (no pun intended He…[Read more]

Hello dear Tom

always cheerful advise I hope you are keeping ok I have hd a bad week very heavy Anti B's some sort of stomach bug hope its on its way ou now!!!
Big ((HUG))
lOVE jO X

hello Jim

Sorry you have had to join It must have been such a shock for you as it is for us all I think the first question is why me!! but you are only 40 where a lot of us are in our 50 and 60s we all have to be positive there seem to more drugs and treatments everyday soCHIN UP:-)
Love Jo

Hi Keith,

Let's hope the medication sorts out the itching and allows you as normal a life as possible during your remission. You will continue to grow stronger from this point and while everyone is different I believe that come the 8 month marker you will feel fit to take on the world. 😎

Best regards 🙂

Dai.