Myeloma Forum | DaiCrowther | Friends Activity https://forum.myeloma.org.uk/members/DaiCro/activity/friends/ Activity feed for DaiCrowther's friends. Tue, 21 Apr 2026 11:20:38 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 c3ce48e102fa1cdf04e73523cdd3eea4 GillyPearce replied to the topic Garry's SCT journey in the forum Treatment http://www.myeloma.org.uk/forums/topic/garrys-sct-journey/page/2/#post-101969 Tue, 12 Mar 2013 21:10:18 +0000 hiya Tom, only found out about it yesterday at my chest clinic appointment apparently it showed up on a ct scan that I had when I had pneumonia. Ive got to have another scan in April to see if its grown and then I have to have them repeated every 3 months for at least the next 2 years. Did the old googling thing and fright meself as you do – but…[Read more]

]]> 407bbe6b697cdd0095b6d71551c44a49 GillyPearce replied to the topic Garry's SCT journey in the forum Treatment http://www.myeloma.org.uk/forums/topic/garrys-sct-journey/page/2/#post-101967 Tue, 12 Mar 2013 19:21:43 +0000 Hello there – I haven't been on here for a while but as a cat owner I just wanted to say that when I came home from my SCT in September 2010 my cat Kiwi was a god send. As visitors were very restricted she was my only company most of the day and sat by my side throughout. I am still (fingers crossed) in remission and yes I get endless infections…[Read more]

]]> 10f9407af63f72d1609292584c9464d4 stephenhuggett replied to the topic It is all supposed to be OK now in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/it-is-all-supposed-to-be-ok-now#post-107944 Tue, 05 Feb 2013 18:28:19 +0000 hello gill
its been along time since ive been here.i feel for you & your family.my name is stephen to.my dawn passed away 29/01/12.i must have cried every day for six months,i still have my moments now.people said to me it will get easier.those words dont help you at the time.all i wanted to do was go to sleep & never wake up.theres not aday goes…[Read more]

]]> 5e3d9cdcc580477166ed05c2c563e781 GillyPearce replied to the topic 3 month check up in the forum General http://www.myeloma.org.uk/forums/topic/3-month-check-up#post-93563 Wed, 03 Oct 2012 10:30:38 +0100 Morning David,

Not been on here for a while – glad your paraproteins are still low and hope they stay that way. I had my 3 month check a couple of weeks ago and the pps are still too low to quatify. Do you ever suffer from leg pain I find they keep me awake at night – I sweat a lot aswell but don't no if thats just coz I'm a laydeee!! Hope…[Read more]

]]> c5e89278f954e32939baa9e1bf248c1c stephenhuggett replied to the topic Bridget... 10:30am today and beyond in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/bridget-1030am-today-and-beyond/page/2/#post-107655 Sun, 08 Jul 2012 07:25:30 +0100 hello dai
such sad news,the loss of bridget.you both have helped so many people with your replys to our messages.like nicola i havent been on for a long time.i try & keep myself busy every day.my thoughts are with you dai.

best wishes
stephen

]]> ebdb5aae80402082543fdda4f35bb9a1 stephenhuggett replied to the topic bereavment in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/bereavment/page/2/#post-107573 Wed, 13 Jun 2012 18:17:09 +0100 hello min
thankyou for your message.ive had my mum telling me not to forget my kids too.i am trying to keep it all together & trying to look after joe & jade.joe is 24 & jade is nearly 18.they seem to be coping better than me.im still taking one day at a time.thankyou for your advice.i have read a bit about you.you have had very hard times to.my…[Read more]

]]> 62e2cd55dd0c6e500f3bd754f8c2f652 stephenhuggett replied to the topic bereavment in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/bereavment#post-107571 Fri, 08 Jun 2012 20:00:15 +0100 hello sarah
im so sorry i havent answered your message.i havent visited this site for a while.im so sorry for the loss of your husband.my kids joe & jade say i dont talk to them.what do i say to them.its so difficult. like you say ,people say it does get better,not for me either im still so bloody angry.all i want to do is go to bed and sleep my…[Read more]

]]> e44af90cb638f694adb684dda8b46180 GillyPearce replied to the topic HERE WE GO AGAIN !! in the forum Treatment http://www.myeloma.org.uk/forums/topic/here-we-go-again-/page/5/#post-98818 Thu, 17 May 2012 16:35:33 +0100 Dear Bridget I'm crying as I write this I really, really hope you are ok. I will never forget your kindness when you came to see me at UCH on the day of my SCT – I haven't been on here much -too busy trying to do normal things and forget I've got this bloody illness. You are such a kind person and you knitted me my hats !!! Please keep fighting…[Read more]

]]> 8cb5457981b0c45ce5ac79d8516074eb GillyPearce replied to the topic A Step in the right direction in the forum Treatment http://www.myeloma.org.uk/forums/topic/a-step-in-the-right-direction#post-99302 Thu, 17 May 2012 16:19:25 +0100 Hello I haven't been on here for a while but was just reading other posts and thought how sad it is so many of us are living our lives with para proteins (I hate the word) wish I had never heard of it – sorry – I'm so glad that yours are coming down – Ive got my check up next week to find out if the little devils are creeping up again and if one…[Read more]

]]> 755d666a234eacfb15ca40b0cd0dec02 stephenhuggett replied to the topic bereavment in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/bereavment#post-107565 Thu, 12 Apr 2012 20:24:11 +0100 hello nicola

my thoughts are with you & you family. like everyone says take baby steps
best wishes
stephen

]]> 19ff11f53aa0bb26980b3c0ea0cf5b7f stephenhuggett replied to the topic Another life lost in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/another-life-lost#post-107533 Thu, 12 Apr 2012 19:47:56 +0100 hello eve

it is horrible going to bed & getting up in the mornings.i will try & take some of your advice.your right the kids do worry about saying or doing the wrong thing.my daughter comes in to my bedroom all night checking to see if im all right.bless her.i have been emailing dai aswell.
look after yourself

best wishes…[Read more]

]]> 9bf04dbb0ada8690716afd2c408acf98 stephenhuggett replied to the topic bereavment in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/bereavment#post-107562 Mon, 09 Apr 2012 20:45:35 +0100 thankyou tom

im trying to be strong,very difficult though

best wishes

stephen

]]> 2d650025d880a076f117e214d7831aef stephenhuggett replied to the topic dawn in the forum Newcomers http://www.myeloma.org.uk/forums/topic/dawn#post-85772 Mon, 09 Apr 2012 20:40:59 +0100 hello bridget

we are all suffering on this site. i find it comforting being here. dawn was my life. dawn was loved by so many people.over 200 at her funeral.her wake lasted 8 hours.i hired a social club & over 100 turned up there.still about 50 people there at 7pm.me & dawn are so proud of what joe & his friends & spar raised for m.m.u.k.i…[Read more]

]]> 5a63c1944e72ab2ab65f560d8c0d745b stephenhuggett started the topic bereavment. in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/bereavment Sun, 08 Apr 2012 19:12:39 +0100 hello
my name is stephen.i have wrote a few words but its on the newcomer page.i cant write it out again sorry for the inconvience.
stephen

]]> 313c13dd86637b3543fb022919c27799 stephenhuggett started the topic dawn. in the forum Newcomers http://www.myeloma.org.uk/forums/topic/dawn Sun, 08 Apr 2012 18:59:37 +0100 hello to everyone & jean who i have spoken to.
im stephen im 47 years old.we have 2 kids joe who is 24 & jade who is 17. im writing this now & im crying like a baby.my wife dawn had al amyloidosis myeloma.she was diagnosed in aug 2010.sadly she passed away on 29/01/12.she was trying to be so strong,she was so very brave.for the last 18 months of…[Read more]

]]> 3089c5de9fe804b9bed8b307c89a0e98 stephenhuggett replied to the topic 10 March 2012 in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/10-march-2012/page/2/#post-107528 Sat, 07 Apr 2012 00:29:19 +0100 hello jean
my name is stephen.thankyou for contacting me.i was caring for dawn normally from 1300hrs on work days, thats when i normally finished work.my place of work worked round me for 18 months & im very gratefull for that.my mother inlaw looked after dawn until i got home from work.i was on the go for most days for 18 hrs aday.i didnt mind…[Read more]

]]> 30fa57aaff77dc38633df8bc9ebfbe5c stephenhuggett replied to the topic 10 March 2012 in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/10-march-2012/page/2/#post-107526 Fri, 06 Apr 2012 17:31:32 +0100 hello michelle.im so sorry to hear that your husband passed away.my name is stephen im 47.sadly my wife dawn passed away 29/01/12.she had al amyloidosis myeloma (heart).im new to the myeloma site.just like yourself my dawn was everything to me & my best friend.im getting very upset writing this email.i think i will leave it like this for now.i…[Read more]

]]> 0d466c7c044f9d9557848b30d0133ed4 NeelieMarsh replied to the topic Don't google it, I couldn't even spell it! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/dont-google-it-i-couldnt-even-spell-it#post-85762 Wed, 04 Apr 2012 18:20:24 +0100 I feel utterly shocked at what some people have had to endure before they get a diagnosis, it is truly a scary thought that GP's will now be in control of their own money.

Fingers crossed that this wonderful charity and its supporters will be able to raise awareness to enable others to get a speedier diagnosis.

Xx

]]> 7b014f5f5b385905b271845e58314a0d NeelieMarsh replied to the topic Don't google it, I couldn't even spell it! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/dont-google-it-i-couldnt-even-spell-it/page/2/#post-85764 Wed, 04 Apr 2012 18:16:27 +0100 Hi, I'm in Mansfield (Nottinghamshire), my dads name is John, and he is being treated at Kings Mill Hospital, with a possible referral to Notts.

xxx

]]> 9002d57ae4745ef3c59cea6a965a79aa NeelieMarsh replied to the topic Don't google it, I couldn't even spell it! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/dont-google-it-i-couldnt-even-spell-it#post-85760 Wed, 04 Apr 2012 08:52:03 +0100 WOW! 😀

Thank you to all of you for your kind words,
It's amazing how reading your replies have helped me to see things in another light.

I've always strived to make others happy, give advise, or a listening ear, and it was kind of embarrassing for me now to be the one needing somebody to help me out and give me a ray of light, but you…[Read more]

]]> 585139dbd6e91fadeb6af4fa089a4c47 NeelieMarsh replied to the topic Don't google it, I couldn't even spell it! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/dont-google-it-i-couldnt-even-spell-it#post-85753 Tue, 03 Apr 2012 11:15:40 +0100 I'm so sorry to hear about what you had to suffer before you got any answers, I feel selfish now to be complaining about a 6 month wait.
Thank you for the helpful and encouraging reply.

Best wishes for you Bridget x

]]> ad729b1edd2121f0676c4ce5479a136f NeelieMarsh replied to the topic Don't google it, I couldn't even spell it! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/dont-google-it-i-couldnt-even-spell-it#post-85751 Tue, 03 Apr 2012 10:06:47 +0100 Thank you for your time replying eve,

It's hard to have faith in the nhs when they won't listen (minority I admit).

I read that in the average gp's working career they may only see 1 maybe 2 patients with myeloma,
I'd never heard of it personally but I knew something wasn't right with my dad and I think the doctor should of realised this…[Read more]

]]> a56291f49353a27c0708713158f1a353 NeelieMarsh started the topic Don't google it, I couldn't even spell it!. in the forum Newcomers http://www.myeloma.org.uk/forums/topic/dont-google-it-i-couldnt-even-spell-it Tue, 03 Apr 2012 08:40:04 +0100 Hi, what a relief to find this site.

My dad was diagnosed with mm yesterday after months of excruciating back pain.
We were told not to look it up on the Internet, which straight away made alarm bells ring for me, so the minute I got home I did just what I was told not to, and after feelng pretty scared I came across this forum which holds so…[Read more]

]]> 8827862b6c4ab6a4ddd8744c8e20c11a GillyPearce replied to the topic Where Are You ? in the forum Off topic http://www.myeloma.org.uk/forums/topic/where-are-you-#post-109942 Thu, 15 Dec 2011 08:24:31 +0000 Hya Tom, I had about 9 sessions of Zometa before I had my transplant. Can't have it anymore coz I got osteonecrosis of the jaw – can you believe it only 3% chance of getting it and I had to be one of them !!!!! Half the trouble with this flippin illness are the side effects of the treatment. Never mind I'm still here and fighting. The only…[Read more]

]]> 859523f786cf9f2c7b7b6378a1aacc67 GillyPearce replied to the topic Where Are You ? in the forum Off topic http://www.myeloma.org.uk/forums/topic/where-are-you-#post-109948 Wed, 14 Dec 2011 12:56:47 +0000 Hello Tom – I haven't been on here for ages – for thems that don't no me I was born in 1955 (excellant vintage eh Tom !) and live in Chertsey in Surrey. I'm under my local hospital and UCLH and am 15 months post SCT and (fingers crossed) still treatment free and in remission. Last para protein was 7 which is fine. In cas its ages before I'm on…[Read more]

]]> cb18ce85de14572caf9251cb5b740bed GillyPearce replied to the topic Trouble at mill in the forum Off topic http://www.myeloma.org.uk/forums/topic/trouble-at-mill#post-109772 Sun, 23 Oct 2011 13:25:41 +0100 I'm seeing occ health on Tuesday – In September I managed to get my hours reduced to 20 per week (after applying in May) I had to wait until they could find some one to job share with me. I agree with you I think they want me out because at the meeting my manager kept emphasizing how stressful and pressurised my job is and perhaps I would be…[Read more]

]]> 533d3379326fa67bb1622d15665d0676 GillyPearce replied to the topic Trouble at mill in the forum Off topic http://www.myeloma.org.uk/forums/topic/trouble-at-mill#post-109768 Sun, 23 Oct 2011 09:50:56 +0100 Morning, Ive been with my employer for almost 21 years and stupidly didn't join the pension scheme . I turned 56 last birthday. If I could afford to walk away I would I just can't believe they are being so blinkered in their atitude. To make matters worse Ive now got another chest infection so tomorrow I will have to go to work ill and not do…[Read more]

]]> d3b19a43312d12bc33040d817f415259 GillyPearce started the topic Trouble at mill. in the forum Off topic http://www.myeloma.org.uk/forums/topic/trouble-at-mill Sat, 22 Oct 2011 17:26:45 +0100 Just wondering if anyone else has had any trouble with their employers with regards to sick leave. I had a disciplinary meeting last Wednesday with mine because I have had 5 episodes of sickness in the last year and this apparently is not acceptable !!! I am now not allowed to be sick for the next three months or else I will be out of a job -…[Read more]

]]> 88963b5268ccd38c8f83a02baa6cf35f GillyPearce replied to the topic Gimme just a lil more time.... in the forum General http://www.myeloma.org.uk/forums/topic/gimme-just-a-lil-more-time/page/2/#post-91482 Sat, 22 Oct 2011 17:17:50 +0100 Manuka Honey is supposed to be good for your immune system only trouble is the best ones are a bit expensive – about £10 a jar. Mind you Ive now got yet another chest infection so maybe its not much good after all !!!

]]> f0fb65359f422c05999952381002ae46 GillyPearce replied to the topic Gimme just a lil more time.... in the forum General http://www.myeloma.org.uk/forums/topic/gimme-just-a-lil-more-time/page/2/#post-91480 Fri, 21 Oct 2011 16:13:27 +0100 I haven't been on here for ages coz my pc has been playing up – to all who might remember me hello and how are you all doing ? I had to reply to this post – I also had my SCT in Spetember last year and my para protein has started to go up again (last reading was 5) but both UCH (where I had it done) and my local hospital are not bothered about…[Read more]

]]> edd5db641907e19101bfb00d72600f5a MeikeWhite replied to the topic Velcade 6 - Yippee! in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-6-yippee#post-98211 Wed, 14 Sep 2011 00:30:21 +0100 Fantastic News Dai! Here is too a very long remission time!!

David was supposed to start his 6th cycle today but he has been admitted feeling under the weather. So they are waiting to see whats what and do a few tests and a scan.

Hope the last two cycles are being kind to you!!

Love
Meike

]]> 28128b6a77d2f212d02f4a997588c2d9 MeikeWhite replied to the topic Peter in the forum General http://www.myeloma.org.uk/forums/topic/peter/page/3/#post-90397 Wed, 14 Sep 2011 00:15:24 +0100 Dearest Min,

I don't know what to say. Peter's passing has come as complete shock and so sudden. My heart goes out to you and your family! You are a remarkable woman who has been supporting her husband in the most loveable way. You are also incredible at advising, helping and supporting other members of the MM family. Please keep strong! And…[Read more]

]]> 5d8148b52e8d2ad78e3b0a86702528fe MeikeWhite replied to the topic dad just diagnosed at 48 in the forum Newcomers http://www.myeloma.org.uk/forums/topic/dad-just-diagnosed-at-48/page/3/#post-84556 Mon, 15 Aug 2011 00:53:55 +0100 Hi All,

Sorry we have not been here in a while?things have been a tad busy. Thank you all for your kind and encouraging words! David has now completed his 4th cycle of Velcade and by the look of it will be doing an other 4 before preparing for SCT?

The last couple of weeks have been difficult for David. His pain levels in his back have…[Read more]

]]> 2ede0ceafbc4f0d95442190f41ebb78b MeikeWhite replied to the topic dad just diagnosed at 48 in the forum Newcomers http://www.myeloma.org.uk/forums/topic/dad-just-diagnosed-at-48#post-84536 Mon, 04 Jul 2011 00:16:29 +0100 Hi Dai,

Thank you so much for your very encouraging reply!

David has started his 3rd cycle of Velcade on Friday and had a couple of good days on Dex, we even took a trip to our local B&Q yesterday for some manly shopping. He took great delight in using one of those electric scooters they have in store for people who are not so…[Read more]

]]> 8687ac1692f9df3968b8f2f446b393b5 MeikeWhite replied to the topic dad just diagnosed at 48 in the forum Newcomers http://www.myeloma.org.uk/forums/topic/dad-just-diagnosed-at-48#post-84526 Sat, 25 Jun 2011 22:55:11 +0100 Hello everyone,

I'm Christin's mum.

To say the least this has been some roller coaster ride so far. The side effects of the steroids are not very pleasant but we can manage..just need to stay calm! Its the pain that David is in is very concerning and hard to watch someone you love being so uncomfortable! We are having an appointment on…[Read more]

]]> ef76ad84f7ea32f43ebfda4125d382de GillyPearce replied to the topic Paraprotiens after SCT in the forum General http://www.myeloma.org.uk/forums/topic/paraprotiens-after-sct/page/2/#post-89786 Wed, 09 Feb 2011 14:36:24 +0000 Hello David, you where right and I was wrong – it appears I heard what I wanted to hear at my last consultation and got the words remission mixed up with partial response !! Just received a copy of my clinic letter and its there in black and white – now I have to tell my family I got it wrong – s – At least I am in a good stable plateau phase and…[Read more]

]]> 5b5e0b978d7b5afe9e33348764266205 GillyPearce replied to the topic Paraprotiens after SCT in the forum General http://www.myeloma.org.uk/forums/topic/paraprotiens-after-sct#post-89771 Tue, 01 Feb 2011 15:55:22 +0000 Hello David, – Ive got a leaflet from the myeloma UK nurse which is called 'How do I know if my treatment has worked?' and on table 2 – Measuring response to treatment it says Complete remission response (CR) No detectable paraprotein in the blood and normal percentage of plasma cells in the bone marrow OR absence of myeloma cells in the bone…[Read more]

]]> 4d894638abe10e6e4601f414b010747b GillyPearce replied to the topic Paraprotiens after SCT in the forum General http://www.myeloma.org.uk/forums/topic/paraprotiens-after-sct#post-89769 Tue, 01 Feb 2011 15:18:22 +0000 Hello David, I had my SCT in September 2010 so am now 4 months post – I have had 3 blood tests since that have all showed that my para protein is at 4 – my bone marrow biopsy was myeloma clear which meant (according to my consultant) that I am in remission. I am now on no treatment or medication and returned to work yesterday. Just have to keep…[Read more]

]]> 0e0fafeaaa4552c341a575d15191d2b2 GillyPearce replied to the topic Bortezomib Consolidation Trial in the forum Treatment http://www.myeloma.org.uk/forums/topic/bortezomib-consolidation-trial#post-96728 Sat, 27 Nov 2010 16:51:35 +0000 Hello David,

I did speak to the myeloma nurse but she hadn't heard of it either. Dr Rabin is ringing me on Monday with my latest para protein results so I will speak to him then. Have decided that if I'm in total remission in January I won't go on the trial and if I'm not I will give it a go.

Thanks for all your help
Keep well
Love Gill…

]]> 164d621546b3a20632af935bfa394e73 GillyPearce replied to the topic Bortezomib Consolidation Trial in the forum Treatment http://www.myeloma.org.uk/forums/topic/bortezomib-consolidation-trial#post-96725 Thu, 25 Nov 2010 13:57:25 +0000 Hello Gaye, I wont get the results of my SCT until 5th January – I'm having a bone marrow biopsy the week before Christmas. Apparently this trial is to prolong remission in patients that have had a SCT within the last 3 – 4 months. I keep hearing dodgy things about the effects of Velcade and am not sure if its worth the risk or not. But then if…[Read more]

]]> 1011cabe23831e6cd8adcdaf9ed0d11f GillyPearce started the topic Bortezomib Consolidation Trial. in the forum Treatment http://www.myeloma.org.uk/forums/topic/bortezomib-consolidation-trial Thu, 25 Nov 2010 13:09:58 +0000 Hello Everyone – found you at last been a while since Ive been on the old site but anyway caught up now !! Need advice please – I had my SCT on 22nd September at UCH, went to see Dr Rabin yesterday and they want me to go on the above trial – any input would be very gratefully received as I haven't got a clue what to do. Ive got until 5th January…[Read more]

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