[tomParticipant]

Hi carryanne

Your welcome and yes we do have Grandkids 🙂 6 four boys and two girls and we are hands on with them all.

How did i cope?? well I have to admite I have never done much differant with the Kids apart from when I was proper ill and i couldn't do anything at all and it was all left to my Young Bride (Elaine)

You will find it hard work with the kids after if not before the SCT I had mine in December 2009 and doing great now and am pleased to say DRUG FREE 😎

I think kids know when we are not well and some how dont bother us too much ??? All the best with it and am sure you will have more chance of catching something from a stranger than the Grandkids,

Love To Onwards and Upwards xxx

[BADGERParticipant]

Hello Carryanne
I am sure you will be ok on CDT i think it is probably the DEX that makes your feet puff up have a word with your DOC when you go it makes my ankles swell a bit I also have pramidrinate once a month which seems to be ok no real side effects
good luck with it all:-)
Love Jo x

[jmsmythParticipant]

Hi Carryanne

My hubby finished SCT in December. There was one month when both his feet and legs swoll up. When he phoned the unit they told him to go up. The doctor gIve him agood examination and sent him home. Eve told us to raise his feet and that seemed to do the trick. Hope things improve

Love Jeax

[VickiParticipant]

Hi carryann,

Infections 🙁 Colin did have a lot of them and we sort of knew when it was time to go to hospital. When there are children around its difficult cos they pick up all sorts, but as Tom said they are the grandchildren. It can be isolating to suddenly stop doing something because of mm, and that it so frustrating. We did not have many children around but the general rules apply in my opinion….if someone has flu stay away, or if they have bad colds, there will be times though when it's potentially unavoidable so we had plenty of washing of hands, using hand sanitizer etc. that way we tried to keep the germs at bay in a sensible way. There is no way of seeing the germs, but just be sensible and careful, you will know what's right at the time.

Colin did and still does get very tired. We just did tried to plan around the cycles, do stuff when Colin was well and not when he wasn't. Again in most cases you know when it's possible to arrange to do things and when not. However with regard to infections there was many a time when I came home from work, Colin having been ok during the day and then by the time I got home we were off to the hospital. It is a difficult and sometimes unpredictable journey But you have to keep going.

I would say enjoy your family and just work around the mm, hard but doable

Best wishes

Vicki and Colin x

[adamsp41Participant]

Hi Carryanne…just picked up on your post regarding reducing risk of infections…I am 2 years post SCT and have had 5 infections in that time that required hospitalisation…a lot of it is down to common sense and family responsibilities….I keep away from anyone who has a cough…cold…sniffles …anything really…my family are all aware of this restriction and if I don't see my kids or grandkids for a couple of weeks then so be it…my friends are aware as well…I always ask is everyone well in the family before a visit…also…keeping away from crowds(we tend to do our shopping early morning)and using hand gel ALL the time is a comfort also when anyone visits our house we urged them to hand gel…your lifestyle just requires a little fine tuning but as Vicki says it is doable…stay safe ..Phil

[EmmaParticipant]

Hi Peter so glad to hear you are doing so well after your SCT! I think you definitely deserve the star pupil award. It certainly has to be mind over matter in the fight against MM. You're doing a great job and encouraging others in the process.

I'm just looking back at your old posts regarding your journey on CDT as mum is now on her 4th cycle. 5 weeks left. I really hope she gets some good news and a break from treatment to begin to feel 'normal' again, what ever the new normal will be!

Take care of yourself,

Emma. X

[andygParticipant]

Hi Carryanne.
Welcome, belatedly, to the forum. I hope you have a long and successful stay. I'm one of the rarer cases with MM. I was diagnosed Oct 2011 and told I'd probably be having a SCT in the spring 2012 – well it didn't go to plan and now I'm on my 4th treatment and at last I'm making a little progress month by month. Auto SCT and Allo SCT have both been almost ruled out for me. Auto due to the battering my bone marrow has taken from the different drugs and the length of time I've been on the drugs 🙁 Allo due to only finding one match out of 7 million on the database and he wasn't a good enough match. The Prof didn't rate my chances of getting out of hospital after the SCT. Usually there's a 20% mortality rate with Allo though this is improving all the time. Anyway that's my tale to date like I said I'm a rarity 😉 and at the moment I'm well and Revlamid is doing its job.
I'm with Phil when it come to avoiding infections. Everyone around me, family and friends know to stay away if they so much as sniff and I try to avoid crowded places. But having said that you have to LIVE so I still go to pubs and clubs but I'm a bit careful where and whomever I sit with. Going on holiday is a problem if flying because the air is resurculated in the plane so everyone gets any bugs going but it's a risk I'm prepared to take. Came back from Greece last October and just avoided being hopitalised though I had to go to the hospital every day sometimes twice a day for antibiotic injections. It hasn't put me off and we're looking to go to Greece again in June MM permitting.
Try and live your life as much as you did before diagnosis jumping the hurdles that MM throws in your way things will inevitably be cancelled or postponed along the way but try and not let it get you down. It's an awful worrying disease but you can live with it and after your SCT you can return to good health with little or no drugs for a long time. See Tom he's got it cracked 😉 Have faith in the docs and the drugs ask questions be bloody minded I won't tell not to worry because that's nearly impossible but you do get used to living with MM and all it's problems.
To nick Tom saying "onwards and upwards" it's working for him.
Good luck on your journey and take care.
All the best.
Andy xx

[DaiCroParticipant]

Hi Carryanne,

While you are feeling relatively fit and taking hygienic precautions etc., you can carry on more or less as normal… but there will be certain times where you will have to take extra care, especially where germ carriers are concerned.:-(

I am assuming that your CDT treatment will be a complete success and that you will then start the Stem Cell Harvesting procedures. If you have a cold or some other infection these procedures will be delayed… the same for your Stem Cell Transplant. You have to be strong and positive and somewhat bloody minded at times… banning anybody with infectious germs or anybody who has been around someone with infectious germs. The crunch time for this regime will be when you first come home from your SCT and for at least 3 months after. I know it might seem draconian but you will want to be able to have many years of contact with your loved ones and it is not worth risking that chance because of laxness when it really matters.:-|

We have our grandchildren twice a week during term-time and 3 to 4 times during the holidays but… there have been times when we have had to cancel (due to one or both having sniffles etc.,) especially when I am on treatment. 😛

Life with MM is different to life without… of course I am stating the obvious but I am not just talking about personal experience… I am talking about how the disease affects the life of loved ones and friends… how, where and when they get to see you being the most important factor. With your Grandchildren, if there is any doubt you can always stay in your bedroom until they are gone (I have done this many times and talked from the doorway with them down the hall (we live in a bungalow) if you live in a house you can talk from the top of the stairs… but if they definitely have colds etc then it is best that they stay away. a sniffle for a child can easily turn into a chest infection and hospitalisation for you. :-0

I have a mantra which I have employed since the start of my MM journey 'Whatever It Takes'… it is my catch-all saying and my way of life. 'Whatever It Takes' by way of processes, procedures and treatments from the medics and "Whatever It Takes' to stay healthy for as long as possible at home. There may well come a time when you cannot have the children after school and this may become a regular occurrence… so while you can carry on as normal for most of the time it is of vital importance that your children find alternative arrangements for child-care when necessary… noting that this may happen very quickly at times.:-/

Until you are well on the way to recovery following your SCT it is best to take precautions and err on the side of caution… don't take the risk… my experience and the experience of many on here I am sure, is be safe not sorry… it will be well worth it in the long run.8-)

Sorry to be sounding like a party popper but while we can be very strong mentally and spiritually unfortunately we are very vulnerable to lurgy and germs and the like.:-S

Regards

Dai.

[ozzyParticipant]

Hiya
I find it useful when I am going out where there are lots of people or especially when I fly I spray cold defense spray up my nose(I buy Boots make but there is probably other makes out there). It seems to work for me and on the one time I forgot I caught a cold so maybe its worth trying.
Good health all
Ozzy

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