[MenthonfanParticipant]

Hello. I'm a lady of 44 with a brilliant husband, gorgeous 11year old boy and beautiful 9 year girl. February 2013 told I have mm. Emotions have been random, from standing tall and strong to being emotional and sad. I am starting my treatment on Monday and here my journey starts. I yearn to be strong and determined but I'm not in that place yet.
I have had to self-manage a lot due to being a private patient with NO specialist nurse to guide me. Luckily my brilliant GP has allocated me a District Nurse and I have with the right support I will have some level of control and feel strong and determined again. Love to hear that it will be ok?

[eveParticipant]

Hi Joanna

I am sorry you have had to join us,you are so young with children if you want to join the under 50site you have to apply look on this thread I think Deb,s up,d the post last time.

If you do not mind joining the rest of us,it would help if you went on the Newcomers bit,just introduce yourself and tell people a little about yourself,it all helps you might find some one near you who could be of help.

My name is Eve and I am a carer to my husband Slim,we live in a little place called Deal and he attends Canterbury,he is well ahead of you,on his myeloma path and has had lots of ups and downs,there are plenty. More on this site,so we will help in any way we can.

Good luck on your journey. Love Eve

[AlexBParticipant]

Joanna, sorry to meet you! I'm 39 with 3 children (7, 5 & 1) and was diagnosed last year. I completed 6 cycles of "PAD" and am in recovery from an auto stem cell transplant 2 weeks ago. If you want to talk, I'm here. Myeloma and young children is a pretty mind blowing combination.

Do drop an email to Scotty or Phil to hook into the Under50s group. And stick around on here too. Myeloma is horrid, but the human network are brilliant, and can give you lots of support. And we're very luck to have Myeloma UK to fight our corner and provide us with information.

[MenthonfanParticipant]

Thanks Alex and very grateful for your words. Just starting my CDT treatment today and working out what I'll be able to do physically (feeling pretty washed out today) and emotional.

Luckily I have had a good winter health wise but now feeling the physical changes due to myeloma. I know it won't be for ever with 5 months treatment then stem cell.
So you probably know that I may have highs and lows (less lows I hope). By the way how did you manage work, family life and time for you?

I'll email the others names and be happy to get involved!

Take care and thanks
joanna

[dickbParticipant]

Hi there, I'm afraid I have just startedas well, albeit a few weeks sooner than you. I also have a young family, a daughter of 6 so I would assume your thought process will be same as mine, how to look after the children, what to tell the younger ones, the future for them etc.

As for the treatment, I am also on PAD and had my first chemo early Feb, second session is due to start end of this week. My wife is very strong and determined, brilliant at research and very logical which is really good for the family. With regard to what you can do, the doctors here told me to lead as normal a life as possible between Chemo sessions, just avoid crowds and be wary of the illnesses brought home from schools /nursery. Being in Germany certainly helps, I hadn't actually started working before the diagnosis but still have plenty of things to do admin wise and learning the language so I focus on that. There is a local Myloma support group that meets in the town here, is there one near you? I also am anxious to keep some level of fitness to help with the Chemo.

With that, my wife has been like some PTI's I had in the RAF many years ago, this Easter we did 3km walk on Good Friday, 6km in the forest on Sunday and 10km yesterday.

We have had a lot of crying and anxiety between us but we are in a good phase now, I think it helps that I am stubborn about things and won't let it beat me. My biggest motivation is I want to have those Father – Daughter discussions in later life such as 'You're not going out like that' and 'What have you brought home this time?'

Anyway, there are plenty of people out there who will support you and of course your family, as I've said before, my mantra is 'Pick yourself up, dust yourself down and move on' I think that's what we have to do when we get a little down.

[MenthonfanParticipant]

Hi and thank you for your message with very inspiring words. Started my CTD treatment and unfortunately really dipped after coming off the steroid dosage – very low blood pressure and generally feeling worse than ever (takes being ill to a new level).
Hopefully a blip and I'll have some tweaks with my drug plan. Weirdly I have very sore, painful bruised feeling as if my senses are over active and I guess things can only get better. My daughter seems to have blossomed the last few days and went with her Auntie to get some girlie treats – you do see your family in a new light and treasure them more.

[dickbParticipant]

I think now, its not so much seeing my family in a new light but taken them less for granted. Both my wife and I are probably more caring to each other, I think we became a little too complacent about our marriage because we were doing the normal marital thing including the odd argument. Now we both want the other to enjoy what we have together. As for our daughter we want her to have fond memories of the present time and not remember so much the hospital trips, the medication, me being ill. We love her no more than before but we are focused on giving her as normal a life as possible for as long as possible. My doctor told my wife that from now on it's about quality of life not longevity.

I assume your given Dexamethason in between Chemo's. I was warned that a normal side effect is nervousness, fortunately my dose is quite low so I haven't suffered too badly from it.

[AlexBParticipant]

I worked through my chemo, but have taken 3 months off to recover from SCT.

I've really struggled to keep up my family commitments (being honest, I couldn't) for much of the time, primarily because of problems with my back. I fractured at least 4 vertebrae and was in a lot of pain, much better since I have vertebroplasty in February. The family bit has been tough. I'm just getting back in to "Dad" role.

[happyheartsfanParticipant]

Hi Alex,
Got you're message, delighted you are coming out the other side of the transplant. I had mine on the 25th March, been sick since! Good for the weight loss – a stone and a half so far – but not so good for the hair cut. A Bruce Willis look now in place. Just beginning to eat more regularly and was pleased to be home. Missed Vanessa, despite the nagging, and Elsie, who is great. 7 months and full of fun. While still not feeling great I am improving and hope the next week or two will see a big jump forward. In particular I have a very bad rash – on my head, shoulders and arms. Like very ichy sunburn as a kid, I haven't slept more than an hour in the last 3 weeks. Apparently it's normal and will go away.The soner the better. I had planned on rushing back to work – I workeduntil the day before the transplant. Decided a slower pace of life might be better for the time being, enjoy family and friends first. Hope you're doing the same.
All the best, Stewart

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