[VickiParticipant]

Hi Maureen
Hope Ian is still on the mend. It’s so difficult to be know who to trust and what to believe. Colin’s immune system has gone down to 0.15 so he virtually doesn’t have one! But they have let him home with gcsf! Bang goes Colins chance of coming to the wedding. My mum is going to stay with Colin and I an going for the most part of it ( not looking forward to going on my own but the team I work with are going so that should be ok.

We aren’t really thinking about SCT at the moment as we just want to get him to a remission. At the moment there seems like nothing will knock the light chains into touch. Here’s hoping as his bone marrow is taking a hell of a knock.

Where at the myeloma specialist hospitals, do you know. I thought Dai used to say it was Nottingham. Sometimes I wonder whether haematologists are too general and there needs to be someone intervening that knows about mn in detail

Hope the weather is good for you. Lovely here

Vicki

[cygnetParticipant]

Hi Vicki

I’m sorry to hear you & Colin are having such a difficult time with this. Just to let you know the nurses on the Myeloma UK helpline can e-mail you a list of specialist centres with the leading myeloma consultants.

I hope this helps,

C x

[bandityogaParticipant]

Hi Vicki

Ian is still in hospital but responding well to second lot of antibiotics so should be home by the weekend. He is worried about his neutrophils as they are coming down, now 1.2 from 4.2 but his crp has come down. They haven’t found the source of infection yet but he had an MRI scan on his back today. I don’t think it is in his back, no one has thought to look at his gum where he had the teeth extracted. I raised this with the McMillan nurse so she will pass it on.

Have a lovely time at the wedding and try and forget about mm.

Where do you work? I gave up working when Ian came out of hospital in October 2013. I was a company secretary for a small engineering company. I worked there for 17 years and the last year I only worked part time. I don’t miss working and have lots to fill my time.

Hope Colin feels better soon and gets into remission . I don’t know about specialists in myeloma in England, our specialists are in Edinburg, Glasgow and Dundee.

Maureen x

[HarmonyParticipant]

Hi Maureen,
I hope that Ian comes home for the weekend and is able to enjoy a bit of normality. One day at a time. God Bless you both.x

[stanley-1960Participant]

Hi Maureen,

I hope Ian is home at the weekend and on the road to recovery. Looking at your comments my journey was very similar. The first period of hospitalisation was 18 days then 2 days home then temperature and rhino infection back in for 5 days then home for good. I lost a lot of weight in hospital and even more in the first few weeks at home (pre chemo 14st 7 lbs 2weeks after being home from SCT 11st 10lbs).I am now back to over 14st feeling better than for a long time, walk long distances every day 15km minimum and have just got back from Rome where i dragged my wife round every church and attraction for days on end in 35 degree heat(no taxi’s for me lol). I am 10 months post, drug free and very fortunate. I sincerely hope Ian’s journey follows a similar path. Please pass on my thoughts.

Best regards to you both,

Stanley

[bandityogaParticipant]

Hi Stanley

Thanks for the information. They do not know the source of the infection yet but crp now 46. Consultant wants to start Ian on oral antibiotics on Sunday so he won’t get out till Monday, all being well.

Great that you enjoyed Rome, that’s where Ian proposed in 2007. You sound really fit now and hope you have a long remission .

Maureen

[cartdawParticipant]

Hope you soon on the mend Ian . My SCT  pencilled in for early sept all being well. Not looking forward to it. Two more cycles of CDT making it 6 then harvest early August.

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