[raineyParticipant]

Hi Emma (all)
I am new to this forum but have bene tracking the comments on and of for the last year. I feel compelled to mail now and hope it doesnt dishearten too much but also I am looking for some information.
My mum was diagnosed in July of 2011 and was asymptomatic until March 2012, sadly we will never know if it was connected but the timing was dreaful she fractured her spine two weeks after diagnosis she was in hospital and we had hoped they could do the verterbral plasty but alas no the myloema was seen as too aggressive and so treatyment (x1 trial CTD) started. initial response was great but she caught pnemonia and so was back in hospital dad then had a heart attack (survived) but as mums full time carer we had to put mum into respite care where treatment stopped for a while till the infection abated, fast forward to now and after two cycles of VCD, she contracted sepsis she is haning on and over the worse we are very lucky but her paraproteins measures down to 8 but we all agree no treatment at last not now and maybe never).mum in hospital now but is complaining of leg pain and numbness in the feet/calf area, mindful of the now 9 month old back fractures and almost a year of immobility we dont know if its myloema related or sepsis or what and to be honest the hospital isnt very helpful. anyone got anything they can share? On a brigther note mum has come through the most awful of times with the illnesses and of course the myloema, as a fmaily we have grown so strong and are so heartened by her courage, stay strong whoever you are as you support your families with this, it is hard but somehow you pull through

[raineyParticipant]

Sharon
I posted on the response to Emma, you have all my empathy I was almost in the same situation last year but dad managed to pull through after a heart attack mid way through mums treatment, no words can describe the anxiety, sadness and feeling so completely overwhelmed by all of this.
i wake up everyday with the stomach churning, i now get chest pains all down to extreme anxiety and complete feelings of helplessness watching a loved one suffer so much all i can say is we may never meet but my heart is with you and yours at this most dreaful of times.

[sharonboyleParticipant]

Thanks for your message this is a total nightmare and dont know where to put my feelings right now. My mum is well at the minute and on her first week of treatment but i dont know how the future will be. I am so sorry you are in the same position as me but good to have someone to understand how it is, fingers crossed for your mum

[sharonboyleParticipant]

Hi Emma

Not seen you posting for a while and just hoping that all is ok with you and your mum, i am guessing you ae busy with being back to work, drop me an e mail if you get time

[EmmaParticipant]

Email sent Sharon,

Thanks for thinking of me! Let me know if you don't get the email.

Emma.x

[EmmaParticipant]

Hi Sharon,

Yes mum is still in hospital, 4 weeks of CDT left. She initially lost 2 stone but has put a stone back on. She's had anti biotics regularly for suspected chest infection and urine infections but she's been ok. They're not going to operate on her hip so she's doing physio to get better mobility.

So glad your mum is coping well with it and is onto cycle 4 already, half way there.
Hope you're doing ok too. Is your mum having any more problems with finger pain?

Love Emma. X

[sharonboyleParticipant]

Hi Emma
glad your mum has turned a corner, my mum hasnt had any ore finger paindespite her thalidomide being increased to 150mg every day. She has been really good until getting a chest infection a few days ago but she is on the mend i am just hoping when we go to hospital for cycle 4 they feel she is over it enough to let her carry on with no breaks. i have just been more worried about the weight loss because she has been eating well. this is just such a rollercoaster just when you think a corner is being turned and feeling more positive along comes a problem. but just like you i have to stay positive and plod along just really hoping to get to the end of treatment and be drug free and a long remission.do you think your mum will get home anytime soon and will she be ok on her own

[EmmaParticipant]

Sharon,

We initially asked for a referral to the dietician at the hospital to monitor mum's weight and things. Since then they've been great. Mum has ensure supplement drinks and although its not a replacement for food really helps On the days when she has struggled to get food and fluids into her. On her steroid days she tries her best to eat as much as she can and make the most of her appetite. I thought she was going to waste away initially as she lost so much weight but she's quite stable now and not losing anymore. See if your mum's dr will refer her.
Mum has been on walking sticks today and is attempting just 1 stick tomorrow. I'm hoping once the chemo is finished she can come home as its 1 less thing for her to worry about.
My boys start full time nursery on April so I will have more time to be there for her when she does come home. Hopefully she'll have people popping in 4 times a day until she's settled.

Glad to read your mum's pp's are coming down nicely. We've not been told mums results but the dr said she's really happy with mums progress so hoping its a good sign.

I'm feeling more positive lately. Xx

[Author]

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