[SuelParticipant]

Hi Mandy
Well you certainly have been through it, I think it’s probably a good thing you don’t remember to much about it. Your poor family they must have been distraught. I love the fact you’ve got confidence in dr Bloor it’s so important.I had my 100 day post stem cell appointment in Feb,nobody mentioned the word remision,but my pp levels were very low.I am back at work and feeling great, but I feel reassured that if ever I need a second opinion Manchester would be a good option. Keep on getting better
Take care
Sue

[mandyphillips41Participant]

Hi Everyone and thank you so much for replying… Things are certainly sent to try us!!
I have already posted in another forum the following:
My consultant paid me his daily visit on Thursday last week and advised me that I would need to have a hard think about which way I would like to go for the future… He could offer me a double stem cell transplant where he tells me I would probably be unwell for 6 – 8 months and would probably survive at the most 2 years!! (Ouch I didn’t see that coming) or he could carry on with the chemo then put me on the maintenance of Thalidimide, Lenolidimide, Velcade etc and hopefully keep me going for approx 2 years… basically he is asking me do I want to spend 6 – 8 months in hospital and recovering from the transplant or do I want the time remaining to be quality time!!!
As you can imagine my head is all over the place, every time I look at my husband & kids I cry, I can’t bear to think of them without me and I don’t want to be without them…
Not sure if I would be wasting time but I think I have to ask another professional, I cannot just accept this. I did ask him if he is ever wrong and he said Yes!! I told him I am a fighter and I will fight this. He just smiled at me, I feel as though he has already given up on me although he did reassure me that he will fight for me all the way. Maybe I just can’t accept this, well can you blame me. All of a sudden at 50 I feel very young. Hopefully Not, but has anyone else experienced anything like this?
Mandy xx

[CarolsymonsParticipant]

Oh Mandy what huge decisions you are being forced to make! If it would reassure you then seek another opinion. Not everyone suffers for months after transplant but I guess your consultant knows your situation better than anyone else. Sending strong positivity your way -hoping you make the best decision for you and your family. Have you thought about seeing or seen a counsellor? It might help to discuss your feelings with someone outside of the family circle.

Carol

[eveParticipant]

Hi Mandy

Why not ask him what he would do if he was in your position,????? But still get another opinion?????,they all have different school of thoughts.

I can only tell you,Slim was basically told,no treatment,would support him so go home and die,he is now being treated by another hospital after a second opinion,and yes we realise he still might die,but he will die fighting.
There are no long term plans,daughter is coming back from New Zealand with grandchildren,something to look forward too.
Went out for dinner last night managed to last an hour,finished him off for today,but we enjoyed it.
Wheelchair job along the front this afternoon,France looking great across the English Channel.

Mandy if your life is going to be short,get on with it!!!!,if you worry about tomorrow it will spoil today,we do not have tears,there will be plenty of time for that after,I begrudge the time spent in hospitals,but if it buys extra time,I have to accept it. We try to keep the Myeloma locked away, very hard as each day brings different problems,good days bad days,hospital days,A&E days,cannot plan anything in advance,and I can tell you now no one,doctors,nurses,friends understand or even comprehend his position,so I would not even con tinplate understanding what you are going through,don’t give up learn everything you can and enjoy everyday,Andy would say life is a gift,and he has a good attitude about it,unwrap each day and enjoy it. Love Eve

[pollyParticipant]

Hi Mandy

The day you posted your sad news April 3rd I also got an email through from the Myeloma Beacon namely Pats Place a fellow sufferer stating( when the end isn’t the end ) it makes interesting reading and as far as I am conerned nothing is over until the curvey lady sings give it a read you may find it reasuring and hope you take some comfort from it.

[eveParticipant]

Hi Polly

I read Pat,s and Arnie,s opinions as well,interesting reading??.?

I like the way you substitute fat for curvy lady,and as I am fat,I won,t be singing,!!! Lol

Seriously Mandy,start fighting,I hate the word fight!!! But your attitude,your will to live will carry you a long way
I would urge any doctor not to have a set agenda!!!,they are so wrong to put there believes on patients,there attitude should be,truthful in facts and optimistic about outcome,with a belief in the patient to prove them wrong.

[jane-wrenchParticipant]

Hi Mandy,

so sorry to hear your news – but I must re iterate what others have said – dont give up! And you really cannot always  go with what the statistics tell us – there are always exceptions- myeloma is such a complicated disease and everyone seems to have different stories and reactions.  I can only give you my personal experience – but when I was finally diagnosed in 1996 after a long time when no one seemed to be able to find what was wrong, I was referred to the Marsden and had an SCT straight away- but the ‘median survival’ was 2 years.  That was 18 years ago! Obviously it hasn’t been a smooth ride and with both SCTs there were apparently times when it didnt look as if I’d make it – but I’m here- and still fighting! It’s always  a bit daunting when people say a positive attitude helps, when a lot of the time you feel far from positive, but I think I was very angry too and determined not to let it get me! It was on,y when I was diagnosed and needed a blood transfusion that I found out what my blood group is – B positive- so that’s my mantra! Be positive- and dont let it get the better if you!

jane xxxx

[pollyParticipant]

hi Mandy

Today I read another article from the Myeloma Beacon which again brought me back to you and your dilema and like our friend Eve who claims to be pleasantly plump lol said its a matter of attitude that will carry you a long way, and she is right , I consider this desease sly and deceitful and dos’nt care who you are, and so you’ must give it no quarter and fight the beast that threatens you and your family’s future, which brings me to the article I mentioned for you to read Arnies rebounding world (the one thing I won’t do) in the mean time stay strong with knowledge we are all here for you

Polly

[Author]

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