[marijaParticipant]

Hi everyone,
I have only recently been diagnosed with myeloma after 6 months of various tests and visits to Gp's, Physio and Consultants. I am only just turned 50 and did not realise that this disease affects so many young people. As with most people I am trying to come to terms with this diagnosis and how it will affect my lifestyle. I am already on chemo treatment and am at present monitoring all the side effects of the cocktail of drugs! I have never in all my life suffered with any major illnesses or taken any medication-even paracetamol was a rare thing to take, so I do feel like I have turned into an ill person overnight. I have always been very healthy and fit, dont smoke and eat a healthy diet (i.e Italian family so everything has always been home cooked with fresh ingredients). I do feel that I have taken good care of myself but now realise with the best care in the world this disease can strike at anytime and affect anyone. I have 3 children, my youngest being 13, I am very aware of how it feels to lose a parent as I lost my mum to ovarian cancer when I was just 13 and it was a very distressing time so I look at my daughter and pray that my disease might not be so aggressive and after reading all the literature on myeloma there are really good results and although not curable is a very manageable disease. I really am a novice to this disease though and am happy to have found this site. I have read some of your messages and the first thing I feel is that I am not alone and that there is great support network out there.

I feel fortunate that I know all of my medical team having originally worked as PA for the haematologist who is now treating me! I have worked in a hospital environment off and on for 20 years and and so I know have a better insight than most. They are a lovely team of people and very supportive although as usual within the NHS under-resourced and stretched. I lost my husband in my 40's and decided to train as a counsellor which I did for 5 years and then returned to the hospital, I have always worked in a caring profession. My problem is I have always been the one to care for others and I dont really know how to be a patient or accept help and support from others, Im finding this hard. I am now in a very happy relationship with a lovely supportive man but I think he also is struggling to come to terms with this disease as we just dont understand it fully. I hope that I haven't bored anyone silly but I would really appreciate support and to hopefully along the way make some new friends in similar circumstances. I would also like to offer any support I can or help to others if I can.
Thankyou everyone for your time and look forward to hearing from you.

[tomParticipant]

Hi Maria

First the welcome, welcome to your forum sit down and be comfy as am sure you will use it for many years to come 😀

What treatment are you having and do you know what they have planned for the road to your remission.
Where are you being treated as we might have the odd one (other than me that is Lol) that might be at same place.

Your first post was far from boring as will none of your Q's so fire them as and when.

Good Luck in your road to remission.

Love Tom "Onwards and Upwards" xxx

[andygParticipant]

Hi Maria.
Welcome to the forum. This is the place to let off steam, ask questions and hopefully get some answers.
Although none of us want to be members we are a friendly bunch and at times a funny bunch – especially that Tom. None of us are experts but if you ask a question you'll always find someone has an answer through experience. We all travel different journeys with myeloma and all react differently to the treatments that come our way. Some sail through to SCT others take a more leisurely route. Don't be afraid to ask anything and don't be afraid to offer an opinion. We're here to help and you will before you know helping too. I hope your journey to remission is short.
I look forward to reading your posts.
All the best.
Andy x

[BADGERParticipant]

Hi Maria

welcome to the forum not a place you would have wanted to join its always a big shock to all of us the question is why me nobody seems to know that sort of makes it worse it seems most of us here were fairly fit and active
you will have some knowledge about the illness as you have worked in the enviroment but I dont suppose it helps much I do hope your mm Is not agressive and you get a quick and long remission
Chin Up
Love Jo x

[angeParticipant]

Hi Maria

Welcome to the forum, you are in the right place here to get support and advice from lovely people. I too was recently diagnosed and am 51 years old with 4 children, my youngest daughter is 13. I used to work as a medical secretary in biochemistry and I am now a patient in that hospital. At present I work in Medical Genetics at a hospital up the road so feel the same as you knowing the people who are looking after you! I have not started treatment yet but it is round the corner. Good luck with your treatment.

Take care Andrea x

[DaiCroParticipant]

Hi Maria,

Welcome to the board, it is as supportive and friendly a place as you will ever want to find… but I'm sorry you had to find it in the first place. 😀

The beauty of this board is that there will be someone a few days or a few weeks ahead of you and there will be a line of people stretching all the way down the gamut of experiences that MM and its treatments provide. 😎

You will never have to worry about the question 'Is it only me?'… because the answer will be a resounding no! From your prognosis and frontline treatment, through preparation for a Stem Cell Transplant, Velcade, Revlimid and beyond… procedures, processes, frustrations, shared joys, fears, delights and diets… all MM life is here… with someone to answer your queries (or if they can't, pass you on to someone who can). 🙂

There is a plethora of websites and web information (and web mis-information) out there but most here will tell you that for all practical purposes and support, MUK is all you will ever need. 😀 😎 🙂

Regards

Dai.

[VickiParticipant]

Hello marija,

Welcome to the forum. My partner Colin was diagnosed in october 2011 and just had a transplant in October 2012, came home end of november 2012. This forum has been a huge help to blvd of us, either for me asking supporter questions, or on behalf of Colin as regards mm. I won't say I'm still not upset or worried but you sort of learn to deal with it. Also I've phoned the mm team nurse from this site a few times and they have been very helpful and friendly too.

Like you Colin was very fit and healthy prior to, lots of sport, active exercise etc. So like you a huge surprise. However we are here alongside you so please ask away, will support you all we can on your journey to remission 🙂

Vicki and Colin x

[teds31Participant]

Hi Maria, Sorry you are here but you could not have found a better site everyone is friendly and helpfull . the best thing is ask lots of questions and keep looking on this site as there is always some one on the same bit of road as you. Ted

[marijaParticipant]

Hi Ange

sorry my reply is so late. Since diagnosis everything seems to have been a bit of a whirlwind. To date I have managed my CTD treatment, have had stem cells harvested and am trying to make a decision about transplant! I wondered how you are getting on? We seem to have a bit in common with having a 13 yr old, working in hospitals etc.. Hope you are well.
Maria

[marijaParticipant]

Hi Tom
sorry for such a late response. Life has been a complete whirlwind since diagnosis. Just to give you an update I have had CTD treatment and stem cell harvest and am due to have a transplant but havent decided as yet when I should have this. Thank you so much for your reply and support and I promise I will try to keep in touch.

Maria

[marijaParticipant]

Hi there Andy

Im sorry for such a delayed rsponse. Since being diagnosed life has been a whirlwind. Just an update for you, I have had CTD and stem cells harvested and currently in line for a transplant in which I am trying to decide whether the time is right at the moment. I shall keep in touch and read this site regularly. I hope you are keeping well?

Maria

[marijaParticipant]

Hi Jo

thankyou for your reply and I apologise for my very slow response. As an update I have had CTD and stem cells harvested and am now inline for a transplant in which I am still considering whether now is the best time. Its certainly a journey I never would have envisaged for myself but I have managed so far and have realised that this will be a long journey. Thank you for your support.

Maria

[marijaParticipant]

Thank you very much for your reply and I would like to firstly apologise for my very slow response. Unfortunately since diagnosis everything has been a complete whirlwind. As an update I have managed CTD and stem cell harvesting and on course for a transplant but havent decided whether to have this yet or not. I hope you are well and hope to be more active on this site in future

Maria

[marijaParticipant]

Hi to you two

Thank you for your reply and support. I apologise for not responding sooner but life has been a whirlwind since diagnosis. As an update I have had CTD and stem cells harvested and now deciding on whether to proceed with transplant yet or not. I do read this site on a regular basis and hope to give more input myself. It is certainly not an easy journey having MM but I have found lots of support out there although it can be a very lonely illness. I hope you are both well.
Take care
Maria

[marijaParticipant]

Sorry everyone if it looks like Ive replied several times but felt I had to reply to you all individually. As you can see Im very new to this site! Has made me smile today though

[Author]

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