[pipsParticipant]

Dearest Paula

I have just returned home from hospital having had my second SCT. I am feeling increasingly weak but

I just wanted you to know that I am thinking of you and I hope your  treatment at the hospital will work so that you can move to having your SCT and after that life can begin again. Soon you will be able to dance and travel and laugh again ….

Pips

[pipsParticipant]

I am deeply sorry but at least Wendy went away peacefully..

and as for you …I miss your post but  I don’t want you to relapse …

I want you to live life to the full as you do..

I sense your beautiful lively spirit all those years ago and I never forgot you …

Strangely it felt as I knew you …

[pipsParticipant]

Dear Jet

I am so sorry to hear about Wendy.

I don’t know Wendy but I sense from you,  that she is special and that she means a lot to you.

I was diagnosed, I think around the same time as you, seven years ago in 2010. I had a stem cell transplant auto, and I remember reading your journey wuth the allo transplant.

I used to enjoy reading your post and your blog.

You are funny, bright avd so brave.

Well, unlike many others with this condition,  we are both here,  and we are lucky..

Again I am deeply sorry about Wendy.

Be in touch Jet… you are special …

Pips

[pipsParticipant]

Kazza

It is good news that your mother ‘s current treatment appears to be working well, that is so good as it is not sadly always the case for everyone. So this is in itself something to be celebrated and be grateful for!

As for the stem cell transplant, it is rough going for a few weeks but after that, once the strength is back, things start to be easier and certainly, if it works, it could be an option to consider.

I can imagine how frightening the whole process is and making a decision must me also paralysing .

As i have said, I can only share with you my personal experience, as myeloma is such an individual disease where one treatment or stem cell transplant may or may not work for all …

Kazza the best way forward is to discuss fully with your mother ‘a consultants your fears, and reservations and explore with the consultants all the options open to your  mother. Prepare a list of questions so that you are well prepared. Also you will find information on this website on treatment section which explains Stem Cell Transplant.

Akso you could get support and your questions answered also by the clinical nurse from the hospital where your mother is being treated.

Again wishing you both courage as there is hope and options ….

Pips

[pipsParticipant]

Kazza

I know how you and your mother may be feeling.

I was totally terrified when I was first diagnosed with Myeloma.

I was diagnosed 7 years ago and had a stem cell transplant almost seven years ago now. When I was 49 years of age .

In the last seven years after my stem cell transplant, I have lived well and almost normally forgetting about myeloma . I continued working and enjoyed life.

I have however, relapsed a few months ago and now I have just finished  my 4th cycle of Velcade, Dex and thalidomide.

The treatment has worked well at reducing my para protein from 19 to 2 and whilst I may need a 5th cycle, to achieve complete remission , the aim is for a second stem cell transplant which I hope will achieve a long remission once again. Of course with a second transplant, one cannot hope to achieve as long of a remission but if I were to achieve only half, of what was achieved before, that is three years of being drug free, that would still be a blessing …

now of course

myeloma is such an individual disease and the response and treatments  have to be tailored for each individual patient with the advice of your colleagues consultant .

I wanted to share my experience of having had a stem cell transplant and aiming to have a second one..

I have not tolerated well the current VDT as the steroid, velcade and thelidomine, a combination of these powerful drugs leaves me incredibly tired and the side effects such as  neuropathy, constant tinnitus and weight gain..

so in my case, being able to be drug free for a while, is worth it and a second stem cell transplant is definitely the way forward.

I wish your mother well in this difficult time.

Pips

[pipsParticipant]

Brilliant post..

I am in the same situation now this week suddenly jobless.

I have made the decision now to return to work and i am in the process of applying  for early medical retirement. It will be a difficult process no doubt led by HR ..

Seven years ago it was sheer panic and a turning point in my life when I discovered that I was going to live or not live with the uncertainty of myeloma..

Now I have relapsed and Myeloma is back again live in my life for a second time but this time I know that I  have to say  good bye for good to my work.

I have  relapsed after 7 years of a good life with no medication and I worked all of that time but I know now that a second stem cell transplant and a second journey to get myself better means that I can’t hope or plan to return to work.. I feel now weaker and more importantly I know that there is now no guarantee of how long I will have …

but suddenky  this week..I find myself fir the first time in my life …jobless ..

It feels both liberating but at the same time extremely frightening…to be jobless as I feel that I have indeed lost my identity and my sense of purpose…suddenky  emptiness has invaded me and I am left vacant…

Strange,  it is only this week since  I am jobless and already when I am asked what I do, I can no longer even respond …

I no longer know who I am and I still can’t and don’t want to say …I have cancer and all I do is wait to see if the treatment is going to work to buy me some time …as in essence that is what it is …

of course I know I am immense grateful that I have been given 7yezrs of a good life and I lived a normal life ..almost a normal life and better in a way knowing that I was given a second chence …

but now a relapse and jobless is harder and devastating..

I will of course have to re invente myself and find  a new bearings but right now I feel lost

Pips

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