Hi Mike
Thanks for your kind reply. Sadly mum passed away on the 8th of November so its too late for her but hopefully someone else on here will get some help from them.
Hope all continues well for you
Love
Sarah x
Hi Eve
I know what you mean about fighting although we are fighting for the opposite right now. Still have a lot of laughs everyday and have a few trips in mind maybe a spa day too.
Its hard to watch someone you love in pain but fighting for them makes it easier in a way as it gives you focus and strangely almost gives me some comfort as I feel i can do something to make life what he wants it to be even if i can't make her physically better i can at least give her the voice to feel mentally better if that makes sense. Heres to many more happy days for you and Slim. Love Sarah x
Thanks Nettie. Will be good to tell her side effects seem to get better the further in you get. Fingers crossed that you keep on having good results. Love Sarah x
Really glad it is working well for you Annette. I know I am hoping for a lot but maybe just a chink of light as so many seem to do ok on it Keep up the good work and hope that pp level keeps going down for you.
Love Sarah x
Wow thanks for all the replies so far. Thanks as always Tom yep she is a very brave lady especially when i know she has had enough really. She lost her 2nd husband two years ago before they had even made their first anniversary and while nursing him through his cancer she skipped her annual check (She was diagnosed with smoldering myeloma 14 years ago) and when she turned up 4 months late it had started.
She will be on the lowest dose every other day as she is already in kidney failure but the Myeloma is so aggressive that she now has tumors on her spine and her all spine is riddled with it. Really she just wants to buy a bit more time but without too many side effects. Its great to hear how everyone has coped.
She has another scan on her neck and a lumber puncture to have in next couple of days as she has lost feeling in her mouth and eating and drinking are becoming difficult, and hopefully some radiotherapy to shrink the tumors to relieve pain. She was on velcade which was giving good paraprotein readings but the light chains were going wild regardless. Velcade stopped three weeks ago and luckily her and her best friend went on a road trip taking in Liverpool, Edinburgh, Whitby and York.
My biggest frustration is that Doctors don't seem to take on board what mum wants. Its all about maybe just try this or that but she has stated she has had enough so time to fight Eve as you said. I will fight for what she wants and worry about the rest when the time comes. x
Hi Again
Beautiful baby girl has arrived and is sprinkling her sparkly magic over us all,
Spotted you on facebook sharing the make some noise post
Hopefully more people will start understanding more and adding support.
Not sure what i would do with time for myself but luckily I have a great guy behind me who keeps me laughig and those are the moments that make it all worth the stress. That and the grandkids.
Great to hear your good news. No treatment is great news.
Mum due to start Velcade in 6 weeks once she stops drinking so more challenges to face but ones that are worth facing.
Hopefully Mum will soon be at a point she can have a break from this.
Only managed a month in remission after initial treatment and decided against the stem cell treatment so fingers crossed.
Not getting hopes up as aware that stem cell was important part in fight but as long as she has some time to achieve some dreams and spend time getting to know her grandchildren i will be happy
God i am waffling now lol
Will hush and wish you many years of non treatment
and as you say onwards and upwards lol
Love Sarah xx
Nope still all rush rush with me. I have a daughter with borderline personality disorder due to have my 2nd grandchild in June. Mum is struggling and trying to hide in the gin, I have a full time Job too runnng a block of retirement flats with increasing levels of residents with dementia which keeps me on my toes lol
Other than that all is good
Alwways good to here good news about good people
Will check in a bit more often
Take care
love Sarah x
Great news for a great guy who was a great support when i all too briefly dipped in here a while back before life got way to hectic.
Well done and thanks x
Thanks for your reply Jo
Can i ask if you were on any drugs except what your GP would normally prescribe. Some sort of maintenance drug or something? Or do you get to be myeloma related drug free?
Just trying to get a heads up as I know mum is fed up of feeling so lousy all the time and the hair loss gets her down terribly
Love Sarah
Hi Liz and thanks
Currently compiling a list of questions to ask as focus is a nightmare and always coming away having forgotten to ask something. My sister and i are there for mum for anything she needs but sadly mums own sisters and brothers seem to have almost forgotten about her. No phone calls no contact and its like she has become invisible overnight. We lost a lot of old family friends when my dad died 7 years ago mainly I suspect because people don't want to be touched by death at a relatively young age and I think the same goes for cancer. Its almost like if you pretend it doesn't exist and never discuss it then its not real. Seems like madness to me but then I run a block of retirement flats so have learnt a healthy respect for death and know the true benefits of facing any illness face on and fighting and of providing support at the scariest point of a p[persons life. Also I had cancer at 27 and had to have a hysterectomy too so have some experience. Mum has a few very good friends but all quite some distance away but provide great phone support for her. We deal with it and move on but just wish people would see what they do when they turn away. Don't care for myself but mum needs all the support she can get
Love Sarah
Thanks for the reply Liz
Glad to hear you are doing well and long may it continue!
Any advice on what questions we should be asking before making a decision about if it is right for mum?
Thanks
Love Sarah
Firstly thanks for the lovely warm welcome i have already received. Its like all of a sudden you are talking and people understand which is not something we have come across too much so far so a HUGE thanks for all thos that have taken the trouble to reply so far.
Can I ask if those of you that have had the SCT needed someone at home to care for them for any length of time when returning home from hospital as Mum currently lives alone and will need to make arrangements for her to come live with me if this is the case.
And as for comparing it to child birth I shall keep that one to myself as mum was in labour 72 hours with me and I was not at all popular with her lol
thanks
Love Sarah
Firstly thanks Sue and Helen for you honest replies. Please don't worry that you have told me the negatives. I am a very down to earth person who deals far better with facts than a make believe version. My first and foremost intention is to work out how best i can support Mum if she does decide to go through with the SCT and what we will be up against.
Mum is 62 and retired last year to nurse her 2nd husband who was diagnosed with melanoma 3 months after they married and sadly passed away in October last year in their first year of marriage. She is being treated at two hospitals with main treatment at QA and the stem cell to be done at Southampton General.
Mum is very tired already and suffers from depression since my dad passed away 7 years ago which has kicked in with a vengeance having taken the plunge to love again and once again lose a soul mate. On top of this the very recent trauma of nursing her husband through his cancer is very fresh in her mind and takes a big toll on how she views what she is going through now.
Just wonder if she has the strength to go through what seems such an intensive treatment especially when I feel she is doing it because she feels she has to for myself and the rest of the family rather than being what she really wants.
Also I know that her siblings have withdrawn from her and seem unable to even phone to see how she is doing which is hard. I know people find it hard to know what to say but can not get my head around the mentality of not being there when someone needs you to be so much.
I know mum struggles with the CDT and the terrible mood swings it seems to give her. And my sister and I have noticed that at times she is unreasonable and almost spoiling for a good row. A lot of tongue biting goes on and having dealt with cancer when i was 27 have a kind of understanding how scary it is and how alone you can feel.
Thanks again for you honest replies.
Love Sarah
