This topic contains 20 replies, has 11 voices, and was last updated by 
Nettie 13 years, 2 months ago.
Hello Eve,
Thanks for taking the time to reply to my post, I thought this was going to be a really lonely road until I signed up to the site.
I know what you mean about not burdening the kids but that in itself can be difficult especially if they're close to the person…
I need to pluck up the courage to read all the positive experiences on the site instead of thinking the worst without any info!
Many thanks again Eve to you and all the other kind, funny and inspirational people on here
x
Hi Nadine and welcome
Hope this helps. I had my STC in Feb of this year and although I can´t say recovery was as quick as I would have liked I am now in remission so I can´t ask for more.
I do get very tired but on the other hand that could be because I look after three horses every day, do all the housework and cooking and shopping, laundry etc. Today I have had my grandchildren all day aged 8 and 4 – they are the most exhausting! I know how hard it must be but whenever possible try and think about all the positive things that will come after mum recovers from the SCT- your mum is so lucky to have a super daughter like you.Enjoy your holiday!
Very best wishes to you all
love Carolxxx
Hi Nadine and welcome ,sorry I seem to have missed your original post. It sounds as if you and your mum are coping well with getting to grips with this myeloma lark. It struck me when you said you are being strong for your mum that perhaps she is doing exactly the same to protect you and this could be making it difficult to talk But try not to worry it will happen with time If your mum is reasonably fit and her doctors reccomend it then SCT is deinitely the way to go I had 18months partial remission and freedom from all the medication , more importantly it gave me the time to build my strength up As others have said its no walk in the park and you have to give your body time to recover, which can be so frustrating at times , but you soon realise your own limits I too have adult daughters and we dont talk about my treatment very often , as Eve says they have their lives and I really dont want their lives taken over by myeloma When I need help they are there for me though So please dont feel you are letting your mum down , she must be very proud of you and know she can call on you when necessary One day at a time is good advice too, eventually life does become more normal as you learn to live with myeloma and all that goes with it Good luck to your mum and you as well Dont forget there are lots of lovely people on here only too glad to help with advice or even just to listen best wishes Bridget
Hello Nadine. Like everyone here sorry you've had to join but as I have found very quickly you feel you are amongst some supportive friends who understand! No one chats much in our clinic waiting room that's for sure. John my husband was diagnosed in 2007 when he hit his 60th. He was very fit and was lined up for a SCT. He was convinced it would kill him but it didn't although it took longer to get to harvesting the vital stem cells as it wasn't as easy as anticipated with two separate efforts separated by a stint on Velcade. He was in remission for at least a year after that although he had problems with persistent anaemia.
As others have said it was no picnic but he would tell you it wasn't as bad as he expected. He found things like having tummy problems rather upsetting but the staff were great. Food was pretty awful and having favourite nibbles helped as did having a little laptop with a 3G modem (the tv didn't work in his room). Very gentle exercise is good too. He was out in three weeks at the end of May 2008 and by August we went on holiday to France but he tired easily. You mentioned travel insurance – we found Freedom Insurance very helpful (their details are elsewhere on this site). They know all about myeloma and assess you individually. They even insured us to go to the Caribbean for a belated Silver Wedding trip which was delayed by Johns recovery that year, although because that was classified as 'America' it was expensive (but it was worth it).
It would be good if you could persuade your Mum to let you go with her to consultations. I went with John a lot in the early days as John didn't take in everything and I'd scribble furiously when the doc was talking. I also went armed with a list of questions for the transplant team. Just keep up the communication with your Mum as well – talking does help lots.
Hope this helps you and good luck over the coming weeks.
Alexisxx
Hi Nadine
I had my sct nearly 6 weeks ago, it was horrid but I'm getting better every day. It is as Debs describes, like childbirth and you begin to forget about it as you improve. I'm doing the shopping and cooking now and watching the dust doesn't get too deep!
About you, I have 21 and 25 year old children(!) and I don't want them to be part of the horribleness, so I don't take them to clinic and only wanted to see them occasionally while I had the sct, they have enough to contend with and i did not want them to see me in such a low state. I have told them all the details and they know that this illness is not my fault but there is nothing anyone else can do for me, and no matter how hard it is to watch, all you can do is be there, listen, and try to support her.
I found the first few months after diagnosis a bit bewildering, intensive treatment, telling people, working and coming to terms with the fact that I might not see my children graduate, marry or become parents or go travelling With my husband when we retire. I have had to grieve for my life as i knew it and how much it has hurt the people I love and who love me the most.
However, I have had my sct now, I see it as the beginning of the next phase of my life. I have found travel insurance and will get away and I'm just going to try to get back to as near what we had before and let the future take care of it's self.
Don't feel too sad about it, we have no choice about this illness, but we do get the opportunity to tell the peple we care about that we love them. Forever
Helen
Hi Nadine
I am so pleased to see you have joined this forum and having read all the wonderful comments above, I really don't know if I can add anything helpful.
I was diagnosed in 2004 and only given five years. Well, seven years have passed and I have gone through two SCTs and at the moment have never felt better! The first SCT was pretty awful but I was very ill before it, but it put me into a good partial remission for four years (with the help of thalidomide).
When I relapsed in 2005 I was offered a place on the Myeloma X trial using VAD chemo (Velcade + Adriamycin + Dexamethazone) followed by my second SCT in Aberdeen. I have to say I was dreading the stay in hospital but it all went so well I was only kept in for three weeks and it has put me into total remission for the past two years.
Just being there for you Mum is the greatest help you can give. I am sure you all feel it is important to stay strong and positive and you are absolutely right – but sometimes there is nothing wrong with letting go and having a good sob, you are only human and sometimes it clears the air and gives you the chance to express how you all feel. This is such a cruel disease but there are so many options and more being researched so hold onto the positive attitude it really does help.
I hope you have all had a great holiday – what a wonderful idea to go away and spend some real quality time together – hope you got the insurance sorted – I always use MIA they are very helpful and not over expensive.
Keep posting and let us know how your Mum is getting on – there is always someone online (look at the time this is being posted!!)
Take care, love Nettie x
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