[chrissieParticipant]

Hi again Eve,

Thanks for your help and good advice. I plan to address the subject of AL with the appropriate department tomorrow and will let you know how I get on. My daughter-in-law in London is constantly asking me if there is anything she/they can do to help but, frankly, with them living so far away I don't see how they can. I have a good circle of friends locally who are very supportive and feel sure if I asked for help it would be there. Meanwhile, as you advise, I plan to take each days as it comes.

[chrissieParticipant]

Thank you Sue! I am feeling a lot more positive since joining Myeloma UK.
I find the posts most encouraging and uplifting. People are so kind. To be honest, seeing David as he is now I was beginning to think he would never improve. Now I am full of hope. Once again, thank you, to everyone.

[chrissieParticipant]

Good morning Bridget. I hope you are feeling well today? You certainly have been through a lot. I am most unfamiliar with all the medical terms.
What is induction chemo? I have worked out that BMB is to do with bone marrow samples! David was in an isolation ward for his last hospital stay as the doctors could not get to grips with the chest infection he had developed. So he spent 16 days within those same four walls!! He was nearly climbing them by the end. So, although life is difficult, I am grateful he is home again.
Surprise, surprise, we have had a call this week to say his potassium is high again and to put him back onto the lowering medication. I do not envy the doctors with the balancing act they have to perfect. They are wonderful.

[chrissieParticipant]

Good morning Eve,
Thank you for all your advice. We do get AL but it certainly isn't anywhere near £73, more like £50. I will look into that. We have a toilet adaptor and a special mattress for the bed. We are also in the process of getting a stair lift installed and we have a Blue Badge. I know exactly what you mean regarding 'decorating the carpet', I have been there. I have had the cloakroom floor changed to ceramic tiles for that very reason. Our kids are not local, one in Canada and one in London (we are in Warwickshire) and they are both boys!! Daughters-in-law are not like daughters!! The only help I have enlisted is a gardener as I can't cope with that any more.
Up until last week, David was not well enough to go anywhere as he developed a severe chest infection and ended up in hospital for 16 days,
which followed closely on a 3 week stay for his hip strengthening ops, but have now decided to try and get out to lunch at least once a week for his sake more than mine as I do get out to do the shopping etc.
I am really grateful to have found this site, so uplifting.

[chrissieParticipant]

Hello Min,

I have just read your reply to me and also your post regarding Peter's funeral. I have lain in bed many nights worrying about that same thing.
Your story and the many replies you received have been a great source of comfort to me. I saw a quotation somewhere which goes 'I know God won't give me more than I can handle, I just wish he didn't trust me so much' and that is exactly how I am feeling right now. David was 70 when diagnosed so work is not an issue. Luckily we do not have money worries but we don't have any family living near us so I have to manage on my own and I am finding it tough going. My moods range from anger and frustration to despair and then determination to fight. I tell myself how much worse it must be for David who has to cope with the pain and the treatments and I am filled with love and compassion. He is a real fighter and has gained a lot of hope from some of the posts I have read out to him. So thank you, all of you.

[chrissieParticipant]

Thank you Eve, it is comforting to know there is some hope. David,too, ended up in ITU after having both hips nailed due to the damage done by this horrible disease. He was unable to have a GA because of his chest problems so had it done under an epidural. He had an embolus that travelled to his lung. Very scary but his recovery from that was remarkable so he is a fighter. I feel it is me who is faltering! To see the weight dropping off him is awful in itself as he was always very slim.
He has also lost 4 inches in height! I am finding this site very helpful as it is good to get things off my chest.
Chrissie

[chrissieParticipant]

Hello Bridget,
Thank you for your words of encouragement. May I please ask how long it took for you to feel better again? David seems to have been going nowhere forward after eight months of treatments which have had no impact on his condition. He is in and out of hospital, which he hates, his potassium levels rise and he is given treatment to lower it, then it goes too low and he is put on a drip to raise it!! We are both feeling totally drained.

[chrissieParticipant]

Hello Eve,

Thank you for your encouraging reply. It is so hard to see a loved one visibly shrinking before your eyes. David too was very fit, keen DIY'er, did all the jobs about the house and garden. To be reduced to the state he is in now is distressing him – he cannot even shave/shower/dress himself without my help, but he remains positive and determined to get well. He had a stroke two years ago and made a remarkable recovery from that, the only residual sign was a weak left hand. To now be saddled with MM as well seems so unfair.

He is on monthly Pamidronate infusions to strengthen his bones. He suffers mainly back ache.
He has been prescribed Oramorph but will not take it because it makes him vomit and causes constipation which he finds more distressing than the pain.

[chrissieParticipant]

Hello Bridget,
Thank you for taking the time to contact me. The reason the treatment is being changed is because they are not happy with the amount of improvement there has been, they feel the light chain count should have come down a lot more than it has. Having said that, at least there has been some improvement which is encouraging for David. He has tried the Fortisp drinks but they make him vomit. He is to see the dietitian at his next appointment and is to have his back X-Rayed as that is where most of his pain is centred. The only time he is pain-free is when he is lying down in bed. He has tried Oramorph but that also makes him vomit. He is also subject to loss of balance from time to time and has had one bad fall. This makes me afraid to leave him for any length of time as I am so worried that he may break one of his brittle bones. Life is a bit of a struggle at the moment but we live in hope.

[chrissieParticipant]

Hi, I am too am new to the forum and a carer. My son gave his dad a big hug last July. It fractured a rib and crushed a vertebra and that is how our journey began. It took from July to February to come up with the diagnosis. What distresses me most is that my husband seems so much worse since he started the treatment. He has lost so much weight and seems to have aged so much, it is making me wish he had never begun the treatment.

[chrissieParticipant]

I too am in some distress. My husband was diagnosed in February and what I find so difficult to come to terms with is the fact that he seems 100 times worse now than before he began his treatment. I am plagued with doubts. What would he have been like if he had never started the treatment?
He seems to have aged 10 years since diagnosis (he's 70) and halved in size. This is not surprising since he has no appetite and eats barely anything. He has been on CTD since February and is to change to Valcade next week. Is this a good sign or a bad sign?
I have been told that patients get worse before they begin to feel better. Is this true? Can anyone reassure me that patients do begin to feel better. He also has osteoporosis and kidney damage. He is in constant pain with his back, his hands shake so much I have to shave him, and he shuffles now, rather than walks. It is tearing me apart to see him suffer like this, I feel so helpless.
I would be grateful for any reassurance anyone can offer.

[chrissieParticipant]

I have managed to register OK but I am very frustrated because I cannot work out how to start a discussion! Help.

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