[EmmaParticipant]

Hi everyone,

Thanks again to you all for sharing your experiences with MM with me. It seemed such a lonely place on Tuesday having heard the word 'Myeloma' for the first time. Your honesty is much appreciated, we know this won't be a walk in the park, but as Tom says it's 'Doable'. I've already prepared my mum for the 'Dexattitude' I have read about on the forums. I'm not used to seeing mum anything other than strong and independent, so seeing her emotional will be difficult. I have informed her it will be the meds making her like that so not to worry she's not going soft!

Peter and Tom – mum has never been overly impressed with the set of teeth she was born with and thinks if anything she may get herself a new set of pearly whites out of this!x

I'm so glad to hear everyone is not letting MM get the better of them and their sense of humour. Ali – great to hear your mum is doing so well. SCT is something I know very little about at the moment, the DR mentioned it to mum but said she thought it was all a bit too much to take in just yet. I think our parents cope with this diagnosis better than us children, because at the end of the day, even though I'm 34, married with 2 young children I still don't feel old enough to deal with this sort of thing and think mum is too young too. It saddens me to see that this disease effects people of all ages as I have discovered on this forum.x

Nicola – Good to hear the treatment is obviously working for your dad, proving all the horrible bits are worth it when you see results like that.x

Mavis – It's great your PP are nil and bloods nearly normal. I totally understand how Kate feels, especially now being a mother myself your whole outlook on life changes and we all worry about our kids, as I'm sure you worry about Kate. You stay strong and continue to defeat this thing, your grandsons will have you around for a long time to come! When talking with the DR about the damage to mum's kidney's from Naproxen we were told that, diclofenac and ibuprofen were all no no's for her. Keeping everything crossed for the radiotherapy.x

I'm not able to get into hospital to visit mum today, there's a sickness bug on the ward and guess who's got it….yep that's right ME not her!! It is a worry though, as we have been told her kidneys are picking up but still need more fluid I don't want her to get ill with this bug.

Best wishes to you all, stay strong and healthy,

Emma.xxx P.s Tom – Mum is Cathy.x

[tomParticipant]

Hi Peter

And dont worry am sure my hair is longer darker and thicker than it looks on the photo ha ha it must be the Light angle he he.
And the Pint sounds good to me 😀

Hi Emma and Cathy

Will you Cathy be joining the forum? am sure it will do you good.
Hope your Mum is son out of Hospital and you yourself Emma soon better.

Tom "Onwards and Upwards" xx

[VickiParticipant]

Hi Emma and mum cathy

Welcome to the forum. My partner Colin was diagnosed in October 2011, age 56, has been through 7cycles of rcd on the myeloma 11 trial and is going in for stem cell transplant next week. Like you Emma and mum, we had never heard of myeloma before and like you I scared myself half to death with the Internet. It definitely pays to stick to sites like this for information because they are balanced and informative, as well as being able to speak with others who have the condition,lives with or knows someone that does.

Colin had a similar to start with his condition, back pain not touched by any medication, but oddly nothing else until the blood test revealed something odd and the after mri revealed he then had a wedged vertebrae in the middle if his spine t12. It is definitely a roller coaster of events with all the medication, cycles of tablets, occasional infections etc but treatment and knowledge about managing this condition is improving all the time. If we can help with any questions please ask. I might take a while to reply as I will be busy with colins SCT over the next few weeks, but will do my best.

Good luck with it and hope your mum is feelingna bit better

Vicki And Colin x

[EmmaParticipant]

Thanks Vicki and Colin, good luck for next week and the following weeks for Colin's SCT. Hope all goes well, will keep an eye on your updates.

Emma. X

[Anonymous]

Hello Emma
Welcome – my husband henry was diagnosed in August 2011 he had 6 cycles of CDT and then had stem cell transplant in March. He was back at work in May!! and found out last month that he is in full remission. He is still not back to normal strength and keeps getting chest infections but he is improving every week. Myeloma is a very individual illness.
Henry's journey started when he felt really tired so went to the doctor and had a blood test and with the results from that was referred to the Haemotologist at the hospital – they did further tests and culminating in diagnosis. I did the same thing and went straight on the internet and then I found Myeloma UK who are great. I too have cried many tears and still do on bad days. But we are grateful for where we are now even though i do feel cheated that the love of my life has an illness that there is no cure for, so we hope that one day there will be a cure. Our children were devasted when they found out but we have managed to support each other. It is good to talk as I bottled things up and just kept myself busy to avoid talking about Henry. I saw a counsellor in the end and that really helped, she asked me what i wanted out of this and i said to be able to talk about my husband without bursting into tears – i have nearly got there. One of our daughters (Amber) did a 10k run in July and her story will be on the website soon. Myleoma have a facebook page and Twitter, but I have found this forum invaluable and met (virtually) some lovely kind people. Take Care
Love Sarah xx

[Author]

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