Myeloma Forum | ChristineUWKCClarke | Activity https://forum.myeloma.org.uk/members/chrissie/activity/ Activity feed for ChristineUWKCClarke. Sat, 11 Apr 2026 20:02:04 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 94478a7e41bc8102bd4c02d65a68a0db ChristineUWKCClarke replied to the topic RE: David in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/re-david#post-107424 Thu, 02 Feb 2012 14:29:14 +0000 Hi Min,

I don't know how to send a private message but my email is cmclarke@talktalk.net. I live in the Midlands (Kenilworth)
so a meeting is a definite option.
I have been persuaded by my son to fly back to Canada with
my daughter-in-law on 11th February for a couple of weeks.
They have a farm so both could not come over for the funeral…[Read more]

]]> 826f7447225256414e9bbfa740ffbc71 ChristineUWKCClarke replied to the topic RE: David in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/re-david#post-107422 Thu, 02 Feb 2012 00:38:06 +0000 Oh Min, thank you for your words of encouragement. I cannot believe that, come Saturday, it will be a whole month since my life changed for ever. Here I am again, roaming the house wondering how I am ever going to manage without him. I don't sleep, hardly eat and am haunted by the memory of those awful months when David was in such agony and…[Read more]

]]> 0d7227b4a64687cca8dffb858a288c24 ChristineUWKCClarke replied to the topic Grief in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/grief/page/2/#post-107416 Tue, 31 Jan 2012 17:10:39 +0000 Hello Roisin,

My big problem is that so many things were left unsaid between David and me because he never contemplated losing the fight. It was always "we'll do that when I am better" – so much optimism. I know for certain that had the positions been reversed I would not have coped so uncomplainingly. I think I have now entered the 'anger'…[Read more]

]]> 7e1257f23b3a1f7bb107abbdbab82195 ChristineUWKCClarke replied to the topic Grief in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/grief/page/2/#post-107410 Thu, 26 Jan 2012 02:48:35 +0000 Dear Dai,

I lost David on 7th January and I am bereft but I do find your sentiments commendable. How wonderful to be able to discuss things with Janet. I didn't get that chance because David never gave up hope, he was determined to beat the illness.
My son read these words at David's funeral and I think they reflect your feelings:-

"Do…[Read more]

]]> d05b91fe194a5679f1b3ada6baffc95f ChristineUWKCClarke replied to the topic Grief in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/grief/page/2/#post-107412 Thu, 26 Jan 2012 02:30:20 +0000 Dear Alexis,

Thank you for your comforting words. I am bereft – can't sleep, can't eat and I have had my daughter-in-law here since the day after David passed away, we go to bed and then after lying there crying I get up and roam about the house. David was given a prognosis of 2-4 years and everyone told me that chemo. made one feel much worse…[Read more]

]]> 280d7682061a23e33d86670e297016bc ChristineUWKCClarke replied to the topic Grief in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/grief#post-107394 Wed, 25 Jan 2012 14:49:53 +0000 This is a big thank you to all the kind, very special people who have replied and offered me comfort. David's funeral was beautiful and I was overwhelmed at the number who came to say farewell – boyhood friends, golf buddies, former colleagues,
close friends and, of course, my wonderfully supportive family.

In the days before the funeral I…[Read more]

]]> 4a8d529bb39d23818182cfc3a21900fd ChristineUWKCClarke started the topic RE: David. in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/re-david Mon, 16 Jan 2012 19:14:54 +0000 I want to thank all the kind people who have given me support during the horrendous journey David and I endured. He passed away last Saturday after a long, painful battle, fought with courage and optimism. I managed to nurse him at home until the very last day and I am grateful for that. He is now out of pain for the first time in 11 months and…[Read more]

]]> e2a6ec0c8016fe760c7d581d5dc8ba68 ChristineUWKCClarke started the topic Grief. in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/grief Sun, 15 Jan 2012 02:34:18 +0000 It is the middle of the night and I am struggling with my grief. I lost my beloved David a week ago yesterday and I don't know what I am going to do without him. He fought a heroic battle against this vicious disease but in the end was not able to overcome it. He was always so optimistic and positive, always talking about when he was better,…[Read more]

]]> e3b7671a51f2ea6ac04081d99068efd6 ChristineUWKCClarke replied to the topic Treatment failed in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed/page/3/#post-91858 Thu, 01 Dec 2011 21:58:17 +0000 Thank you so much Sue. I really find this site a help.

Chrissie

]]> d437b06510b79f11ea79f561db26da29 ChristineUWKCClarke replied to the topic Treatment failed in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed/page/3/#post-91860 Thu, 01 Dec 2011 21:55:11 +0000 Good evening Claudette,
Thank you so much for your encouragement. Am I right in my assumption that sufferers who have had stem cell transplants do better than those who, for whatever reason, cannot have this procedure?

The other question is, when you travelled to France was your husband's treatment on-going? I do not see how we could…[Read more]

]]> 3522afddf234bf6c16cb87256bf8e730 ChristineUWKCClarke replied to the topic Treatment failed in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed/page/3/#post-91856 Thu, 01 Dec 2011 17:07:17 +0000 Thank you very much for your kind wishes. I do not fully understand this horrible disease but David has so many myeloma related conditions that his quality of life is, dare I say, almost non-existent at the moment. He has had both hips nailed to strengthen them against possible fractures, chronic
kidney failure (moving towards dialysis)…[Read more]

]]> 480fce6c068bd69665e23e964a62aea4 ChristineUWKCClarke replied to the topic Treatment failed in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed/page/2/#post-91854 Thu, 01 Dec 2011 16:55:00 +0000 Hi Eve,

We do have skype and speak to my son most evenings, it is just that David is desperate to see where they have settled. They send us loads of photographs but it isn't the same as seeing for oneself is it? We both know it would be foolhardy to travel against doctors' advice and are not sure if we would even be able to get David insured,…[Read more]

]]> 53d93c12b49ae549db0f5163280e17bb ChristineUWKCClarke replied to the topic Treatment failed in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed/page/2/#post-91852 Wed, 30 Nov 2011 21:13:02 +0000 Hello Nettie,

Thank you for joining the rest of the wonderful people on this site who offer such warmth and encouragement.

I read your profile before replying and noticed that one of your correspondents was going on holiday. That is my dearest wish – to be able to take David to Canada. Our son emigrated in June (with our full blessing)and…[Read more]

]]> a6021e57ae5a98b8e204f6ec42e35c09 ChristineUWKCClarke replied to the topic Treatment failed in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed/page/2/#post-91848 Wed, 30 Nov 2011 14:16:15 +0000 Hi Bridget,

As you will see from the note I have posted to Tom, I have been feeling pretty down for a few days now. Actually, I am worn out. The MacMillan nurse has offered day care at the local hospice but, I get several hours free time whilst David is at the cancer unit, so this is not necessary. She has also offered counselling but I…[Read more]

]]> 9892c123f145ee622f2fe1158c589839 ChristineUWKCClarke replied to the topic Treatment failed in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed/page/2/#post-91849 Wed, 30 Nov 2011 14:10:02 +0000 Good afternoon Tom,

I have been in a pretty dark place for a few days. The chest specialist has now told us that they have reached the end of the line as regards treatment for his bronchiectasis and this, coupled with the kidney problems, is making life a struggle for David. I feel so impotent. Thanks for your kind words though.

]]> 6180c9c24604196f805404edb5d333e9 ChristineUWKCClarke replied to the topic Treatment failed in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed/page/2/#post-91845 Tue, 22 Nov 2011 15:29:15 +0000 Good afternoon Bridget,

Have had some pretty devastating news this afternoon. David's consultant told us that the myeloma has increased by 25% and his kidney function has also worsened. Not quite reached the dialysis stage yet but getting ever closer. Because of the kidney impairment they can only use very low doses of Lenalidomide as it,…[Read more]

]]> d679517b7688375bea54ae538e1af3e8 ChristineUWKCClarke replied to the topic Treatment failed in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed/page/2/#post-91842 Sun, 20 Nov 2011 19:02:29 +0000 Good evening Tom, and thank you for taking the time to give me such encouragement. I have learned to hide my worry (David always used to say if I had nothing to worry about. it would worry me!!) but it never goes away.

Like you, David is a fighter and has remained so positive throughout this nightmare, it has amazed me. But after two failed…[Read more]

]]> 48f2d9c50a2a426edd635db32b67febf ChristineUWKCClarke replied to the topic Treatment failed in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed#post-91836 Sun, 20 Nov 2011 18:51:19 +0000 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…[Read more]

]]> 1f00e7546e727b4dbec89ce65d82ed9a ChristineUWKCClarke replied to the topic Treatment failed in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed#post-91840 Sun, 20 Nov 2011 14:29:16 +0000 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.

]]> c8d9a68bc219476f7615df0572c2f8a7 ChristineUWKCClarke replied to the topic Treatment failed in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed#post-91838 Sun, 20 Nov 2011 10:35:38 +0000 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…[Read more]

]]> 042044bbf5c65ce1884e224886a3304e ChristineUWKCClarke replied to the topic Treatment failed in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed#post-91834 Sun, 20 Nov 2011 10:24:18 +0000 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 t…[Read more]

]]> a8cf1ab4d9476d35770ce97bf163f022 ChristineUWKCClarke replied to the topic Treatment failed in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed#post-91832 Sun, 20 Nov 2011 00:44:02 +0000 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…[Read more]

]]> 0d45fe8c4667ec85767a0d906aaf1d0e ChristineUWKCClarke replied to the topic Treatment failed in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed#post-91830 Sat, 19 Nov 2011 16:46:02 +0000 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…[Read more]

]]> 791fa27f2535836aacb052c84de45628 ChristineUWKCClarke replied to the topic Treatment failed in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed#post-91828 Sat, 19 Nov 2011 16:18:13 +0000 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…[Read more]

]]> 17298053150f68046cef66bc4e924c2c ChristineUWKCClarke started the topic Treatment failed. in the forum General http://www.myeloma.org.uk/forums/topic/treatment-failed Sat, 19 Nov 2011 14:34:37 +0000 My husband was diagnosed in February this year. So far he has had CDT, Velcade and is now to try Lenalidomide. I am so distressed as the info says the normal treatment is 40mg daily but he is to have just 5mg on alternate days. This is, apparently, because he also has chronic renal failure (caused by the myeloma)and chest problems too. He has…[Read more]

]]> 1a7144621a265a656053f6e01a4ec3c4 ChristineUWKCClarke replied to the topic mum diagnosed yesterday! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/mum-diagnosed-yesterday/page/2/#post-84715 Fri, 10 Jun 2011 21:43:22 +0100 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…[Read more]

]]> aabfa4a59c8ff06fe194e22f8361db57 ChristineUWKCClarke replied to the topic mum diagnosed yesterday! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/mum-diagnosed-yesterday#post-84708 Fri, 10 Jun 2011 21:35:09 +0100 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…[Read more]

]]> cd1ae3a81a75be9f897321e231f3a319 ChristineUWKCClarke replied to the topic Starting a discussion... in the forum Newcomers http://www.myeloma.org.uk/forums/topic/starting-a-discussion#post-84280 Fri, 10 Jun 2011 16:18:54 +0100 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…[Read more]

]]> 969ffa2113b825174a600f6d598e3476 ChristineUWKCClarke replied to the topic mum diagnosed yesterday! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/mum-diagnosed-yesterday#post-84706 Fri, 10 Jun 2011 16:06:02 +0100 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…[Read more]

]]> aac86b855824c19112eab395396bcca0 ChristineUWKCClarke replied to the topic Registration guide... in the forum Newcomers http://www.myeloma.org.uk/forums/topic/registration-guide#post-83978 Fri, 10 Jun 2011 09:37:42 +0100 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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