[rosieb123Participant]

Hi magic 30
So very sorry that you have also lost your husband so young and so suddenly, what a terribly hard journey we have begun. Things just seem to get harder, but I guess that’s to be expected. My kids are finding things tough too my 8 year old bottles every thing up and my 18 and 19 year old are just running from it. The others talk about their dad and cry and try to look after each other and me. All so different all dealing with it their own way I guess. One thing we seem to have in common is the overwhelming lonlyness we feel at chris absence. I hope you find your way forward both for yourself and you little family. If you want to private message me to talk please do.
Rosie b

[rosieb123Participant]

Thanks Sandra the photo was taken last summer it’s just over an hours drive away from us. We use to go there when we where dating so it was lovely that chris was well enough that day to take a stroll and reminisce. We are talking about chris a lot to the wee one, but it isn’t helping that we have been out of our home since the week after chris passed away because of a burst sewage pipe. We don’t have chris things around us which I think makes every thing seem a little unreal at the moment, but we do have photos which is good.
Eve you are so right, I honestly don’t know what I’d do without my children. They are a blessing to me and we walk this journey together. Six of the kids are still at home I’m so thankful to the wonderful friend who took all seven of us in when we had to get out of our house, so we could all be together, such a special lady. We are blessed to have some great friends, the mayor of our town has raised £400 for myeloma uk growing a mostash during November. and another friend is doing a skydive to raise money for it.
This forum has been invaluable to me over the last 4 years. Although I didn’t post often I would be on nearly every day reading everyone’s posts and I learnt so much from you all so
thankyou to everyone.
I’m missing chris so very much but trying to take things one step at a time.
Love to all. Rosie

[rosieb123Participant]

Thanks guys for your support I’ve attached a photo of chris taken at the glens of Antrim in ireland. Blessings to all.

[rosieb123Participant]

Hi Ian,
My husband is in hospital at moment too. He’s got an infection but has been told his kidney and calcium levels are high and is on a Iv drip to help flush them out. His light chain levels have been rising over the last few months but has doubled this month to 700. He’s been put back on dex to try to slow things down ( he had a hard time on dex so was put on a different steroid instead) he’s been here before but things have always settled with treatment, just thought I’d post to let you know your not alone.
Best wishes, Rosie

[rosieb123Participant]

My husband Chris is not long out of hospital with chicken pox he was in a bad way he couldn’t even make it to the front door to try and get to hospital. He ended up going by ambulance. His pulse was very high and his blood pressure low. Can’t remember all his blood counts but I know his platelets where 24. It turned out he had pneumonia (a complication of the chicken pox) he’s been in and out of hospital with infections lately so doctor is giving him a break of his treatment till he gets some strength back. Funny thing is he has had no contact with anyone with chicken pox that we know of and no one else in the family caught it of him either, not even our youngest who’s eight. Thankfully he’s recovered now and enjoying not having so many tablets to take.
Graeme I hope you r well on the road to recovery now and gaining some strength back.

Regards, Rosie

[rosieb123Participant]

Sorry meant radiotherapy, shows where my heads at at the moment 🙂

[rosieb123Participant]

Just a quick update, we were at the hospital for his routine appointment today and the consultant is sending Chris for some radiation treatment on his back. I asked how come there are new deposits even though levels are still quite low. He suggested that they will probably increase in the next while. So I guess it’s wait and see.
Thanks again for all your replies.
Regards, Rosie

[rosieb123Participant]

Hi David the consultant told us it was free after 24 months he’s on cycle 25 now so I guess it must be free now. Chris’s light chains went as low as 29 they started to increase about 7 months ago so they added cyclophosphamide into the mix which seemed to do the trick, but they have started to increase again, they are just over 100 now. No one has ever mentioned remision and he hasn’t had a BMB since diagnosis so his levels are all we can go by. He gets very tired and his mobility isn’t great but I think this might be because of the medication.
I’m so glad to hear you are in a good remission . Revlimid is a wonderful drug and has given Chris 2 years with his mm under control. Our youngest child has just turned 8 so these are precious years for him, for us all.
Blessings, Rosie.

[rosieb123Participant]

Jeff, I am so very sorry that you have to cope with this alone, you must miss your beautiful wife so very much. Especially now your coping with your own condition as well as your daughters illness. My heart goes out to you and i hope you have people around you for some support. I know how difficult it is trying to cope with so much going on. Your right, the ‘one day at a time’ strategy works better some days than others. Chris first treatment was velcade, then BMT with 7 months remision followed by Revlimid which he has been on for 2 years now, not sure what will be next. Jeff I hope you get word about your operation soon and that the Revlimid brings your pps down into a long remision.
Regards, Rosie.

[rosieb123Participant]

Thanks for your feedback. Chris levels have been very slowly rising over the last few months but I don’t think the doctor is thinking of changing his treatment just yet. We are seeing him on Thursday so can ask questions then. I feel more reassured knowing this is normal for mm patients, even with low levels. I think seeing him in so much pain just unnerved me a little.
Thanks again, Rosie

[rosieb123Participant]

My husband struggled with the side-effects of the dex and like Sarah’s husband was put on prednisolone. He takes 10 mg every day so doesn’t have the ups and downs that he experienced with the Dex and seems to cope with it much better. Perhaps you could ask your doctor if prednisolone could be an option. Best wishes Rosie

[rosieb123Participant]

hi Angela
glad Graham is feeling a little better. He sounds like my husband with his sweet tooth 😀 Hope you can sort out things at work before his transplant, i am a stay at home mum so didn't have that dilemma during Chris SCT. Chris is on revlimid. cyclophosphamide and prednisolone which seems to be keeping his light chains in check at the moment.
all the best
Rosie x

[rosieb123Participant]

hi Angela
I'm so sorry that you have had such a hard year. Getting over the death of a parent is difficult enough without having to cope with your husbands diagnoses at the same time. my heart goes out to you all. I am new to the forum too and like you, read everyone's posts for a long time before joining. My husband had his stem cell transplant January 2011 and although he felt rough at times and was as bald as a coot, he coped well with it all and as many have said on here the SCT is doable. i'm sure your husband will cope well, although Christmas will be different this year for you all. much blessings to you both on the road to remission and hoping 2014 is a better year for your family. if you have any questions your in the right place to ask.
much love Rosie

[rosieb123Participant]

hi Jean
my husbands potassium has been low a couple of times usually when he has a tummy bug and a drip soon puts it right, but my daughters potassium dropped to 2.2 at one point and she ended up in the cardiac ward. shes now has daily meds to keep it right. [she doesn't have myeloma] Eves right it needs to be between 3.5 and 5 so if the level is 58 it doesn't sound like its the potassium. Try not to worry hopefully his levels will come back to normal soon.
thinking about you both
love Rosie

[rosieb123Participant]

jean
it must be hard not having your reguler doctor, I know we have built a real trust with our doctor, although the other doctors in the unit are great too. Chris gets all his treatment at the ulster but I think the City is the only place that does transplants in N.I. we did have a wee chat with Michael Quinn at the info day, he was Chris' doctor when he was getting his sct. Thanks for the bizz about cancer focus, not sure if my hubby would go either but hay no harm in trying. My husband keeps positive most of the time which really helps the whole family to keep living life and not get too down, obviously some days thats easier than others.
blessings,
Rosie
Hi Tom
4 years, thats wonderful, you'll have lots to celebrate this christmas
🙂

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