https://forum.myeloma.org.uk/members/san/activity/ Activity feed for sandra barnett. Tue, 14 Apr 2026 20:56:26 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 e9a4e903411782e312e925ff0afbaba8 http://www.myeloma.org.uk/forums/topic/grief-at-loss-of-my-wonderfull-dad/#post-121102 Mon, 02 Mar 2015 20:40:49 +0000 Hi Jeff, it will get easier believe me, i am sorry for your loss, keep talking to him and think of those great times that you had, love to you San

]]> 47747c92b53baa5960d7a669ea24f63b http://www.myeloma.org.uk/forums/topic/heartbroken-that-hes-gone/#post-119801 Tue, 02 Dec 2014 20:06:04 +0000 Hi Rosie, my love to you and your wonderful family, super to see your photo of Chris in better times, i really feel that our loved ones are not far from us, my nephew aged 7 took it hard when his Nan died at the beginning of this year, lots of hugs , tears, time and talking about heaven helped and we talk often and have her beautiful picture…[Read more]

]]> 5bc65d583d74754760f7d2e19515149a http://www.myeloma.org.uk/forums/topic/slim-my-soul/page/3/#post-118642 Mon, 06 Oct 2014 17:11:39 +0100 Hello Eve, i am so sorry to hear your sad news as you can see i have’nt been on hear for a while but i still think of everybody and wonder how people are getting, i send you love and hope that you are coping with your loss, it has certainly taken me a while to feel as i used to before losing our dear mum,you are such a great lady on here and your…[Read more]

]]> 253f03bfebbc2e921acb927ac496a8dc http://www.myeloma.org.uk/forums/topic/just-under-a-month/#post-115896 Tue, 10 Jun 2014 12:43:10 +0100 Hello Jane i am so sorry for your loss, sadly myeloma is not always picked up quickly and i suppose that the crohns disease masked some early symptoms?, we lost Mum in january and know how hard it is for you all and so sudden for you all, you have a lovely grandchild coming a little light for the family, i send you love and so hope that your pain…[Read more]

]]> 3052eff371e975152241d20126d82ade http://www.myeloma.org.uk/forums/topic/just-under-a-month/#post-114612 Mon, 21 Apr 2014 18:34:14 +0100 I am so sorry to hear your news, i lost my mum in january she was diagnosed with mm in march 2013 and so we did’nt have long its not easy, i have days when i cry and better days when i can recall all of the good things, i feel that she is still around and really hope that this is the case. Easter without her has been hard and i know that it must…[Read more]

]]> 0fbce829d8e2086de09e1b32d88be3d6 http://www.myeloma.org.uk/forums/topic/post-sct/#post-114600 Sat, 19 Apr 2014 21:29:08 +0100 Hi Dick lets hope that things remain stable for as long as possible, it is great that you have such a good consultant to support you, lets hope that the chemo is a long way off, best wishes to you and your family love San X

]]> 7cf0b7cd602e1417506b7f4a3d7bb74d http://www.myeloma.org.uk/forums/topic/bad-news-no-more-treatment-sent-home-to-die-with-dignity-what-to-expect/#post-114599 Sat, 19 Apr 2014 21:15:57 +0100 Hello Poppy, how wonderful that your dear Gran is at home with family and carers, i am thinking of you and Gran and am so glad that you are able to spend time with her at this difficult time, love to you San X

]]> 77d52a6c26b6540a03057b8f24fd7ce1 http://www.myeloma.org.uk/forums/topic/my-remission-is-over/#post-113985 Tue, 25 Mar 2014 14:54:04 +0000 Mandy, thank goodness for your Dr Bloor, he never gave up and neither did you!! so pleased for you and your family that you are at home today, and wishing lots of luck with your next course of chemo, do you know what he is giving you? you are a fighter, keep going, you are doing so well, lots of love to you Mandy, San XX

]]> 5dbd214ead5ed9c62a2479db69f30b7e http://www.myeloma.org.uk/forums/topic/good-remission-after-5-do-not-give-up/#post-113906 Sun, 23 Mar 2014 16:17:00 +0000 So Pleased for you David, and well done for standing up for Myeloma sufferers, you and Tom are an inspiration to others thats for sure, hope that the cold gets better soon, yes return soon ha! San X

]]> ab3615caba8e8ce070f85b33da43214f http://www.myeloma.org.uk/forums/topic/shingles-2/#post-113382 Sat, 01 Mar 2014 16:22:34 +0000 Hi Jean and Frank, sounds like a super pharmacist he knows his stuff, hope that Frank feels better soon, in the meantime sleep is good and easy to get down nourishing food, lets hope that Franks Consultant can throw some light on these other symptoms, is the rib pain to do with the shingles? i wonder, bananas are good for low potassium, take care San X

]]> 988d5211576a83dc31fa1c0a21bede40 http://www.myeloma.org.uk/forums/topic/fourth-line-treatment/#post-112824 Tue, 11 Feb 2014 17:41:19 +0000 Hi Julie i am thinking of you all, i understand what you are going through and i too wondered if we were embarking on the right treatment and really it was all too much for my Mum and Dad to understand, i knew a little more because i could research it and found this forum so helpful and the myeloma nurses and at least felt that i could ask some…[Read more]

]]> 6f930a79d6e5a4d7cc50658206a7c6e5 http://www.myeloma.org.uk/forums/topic/fourth-line-treatment/#post-112649 Sun, 09 Feb 2014 18:04:16 +0000 Hello Julie, i know how hard this is for you, it sounds as though Velcade will help push those PP’s back again and i so hope that Mum has some remission again soon and you know a year is good, i am sure that all will be done that can be done for her, sadly my Mum was unable to tolerate Velcade and the RCD trial affected her liver and so she only…[Read more]

]]> fa9ea255573af1587827d6b2195773bd http://www.myeloma.org.uk/forums/topic/mums-struggle/#post-112322 Thu, 30 Jan 2014 14:22:25 +0000 Thank you Richard for your kind words,it is lovely to hear from you, yes i will stay in touch with the forum, would love to if people think that i may be of help, gosh yes Mum was determined, the Consultant called her a ‘tough lady’ and i dug deep in order to help her through this, though tomorrow [friday 31st] is her funeral bit wobbly about that…[Read more]

]]> 7049c2cf90c9aba859bcd6bd7ecd0fe7 http://www.myeloma.org.uk/forums/topic/mums-struggle/#post-112148 Tue, 21 Jan 2014 20:38:33 +0000 Dear Mavis thank you for your message, its strange but i am already hearing ‘her voice’ and i know that she is still with me, i am heartened that she is no longer in pain and yes we will celebrate her life, Mum had a good sense of humour and her steely quiet determination kept her going, the Consultant said that she was a tough lady she was’nt…[Read more]

]]> 4dddd1d385ff525986750ab6f7a9f1f3 http://www.myeloma.org.uk/forums/topic/my-remission-is-over/#post-112147 Tue, 21 Jan 2014 20:17:24 +0000 Sorry to hear that you are feeling so low, you are wise to try another way forward,there will be another treatment plan for you and hopefully you will be in remission again soon, love to you and good luck tomorrow when you see your Consultant hang in there and be determined to get what you need! San xxxx

]]> 5cc91d55915f3c8c34196eef65602063 http://www.myeloma.org.uk/forums/topic/mums-struggle/#post-112092 Sat, 18 Jan 2014 21:23:21 +0000 Thank you for you kind words Helen, Megan, John and June, xxxxx

]]> 6a2c17bbf9e7372e185f5b8c1cae595d http://www.myeloma.org.uk/forums/topic/mums-struggle/#post-112079 Fri, 17 Jan 2014 22:31:12 +0000 I am sad to say that Mum passed away this afternoon, i used to tell her about the lovely people on this site and the positive attitudes that are shown, she is loved and may no longer be here physically but will stay in our hearts, love to you all i will stay in touch San xxxx

]]> 6e821ca19ad9abd2a477a12a50c46c2e http://www.myeloma.org.uk/forums/topic/start-new-regime-on-monday-20012014/#post-112078 Fri, 17 Jan 2014 22:21:21 +0000 Good luck Tom for monday, i think that velcade is now given subcutaneously as this reduces pn, you will sail through i am sure San xx
Helen so good to hear that you are doing well and feeling better, San xx

]]> a4e5c413723445f7333151107696a80e http://www.myeloma.org.uk/forums/topic/seizures/#post-111743 Mon, 06 Jan 2014 20:29:33 +0000 Hello John, it could well have been the sodium, however Megan is right in advising you to contact our myeloma nurse or your haematology nurse, my Mum had seizures due to her pain medication she was on oxycontin at the time which when reduced and changed to oxynorm stopped. Mums sodium level also dropped after starting Velcade, her fluid intake was…[Read more]

]]> 780526f3493be224950893fd511d3d92 http://www.myeloma.org.uk/forums/topic/it-all-seems-a-bit-of-a-gamble-any-help-appreciated/#post-111742 Mon, 06 Jan 2014 20:16:29 +0000 Hello Deborah, sorry to hear that your pp’s have risen, there are many treatment regimes and i am sure that your treatment team will do their best for you, its hard not to worry about future treatment but hopefully when the decisions are made with you it will work out well for you and get you back into remission soon,and yes lets hope for a cure…[Read more]

]]> 9ef21aec7dceb2ac50b1ebc6d34df5a1 http://www.myeloma.org.uk/forums/topic/are-we-new/#post-111687 Fri, 03 Jan 2014 21:36:34 +0000 Hi Tom, have a great time on holiday and well deserved!! enjoy before your next round of treatment, have fun San xx

]]> ca85e5f4f026fd46a002caebc43ba23f http://www.myeloma.org.uk/forums/topic/christmas1385274381/#post-111619 Tue, 24 Dec 2013 08:03:04 +0000 Well, wishing everybody a good Christmas and sending love to you all, take care and love to all San xxx

]]> 09412e0937c605284205d144a96dc1a4 http://www.myeloma.org.uk/forums/topic/dads-been-diagnosed/#post-111618 Tue, 24 Dec 2013 07:59:05 +0000 Hi Clover, i don’t think that there is a strong genetic link or so my sister and i were told but in time we will all know more, maybe there will be triggers that we can avoid, try to keep your immune system strong and stress levels down and enjoy your life please don’t dwell on it, i so hope that your Dad is doing ok at the moment, and hope that…[Read more]

]]> 568059772897039f54617f8e99a6196c http://www.myeloma.org.uk/forums/topic/mums-struggle/#post-111385 Fri, 13 Dec 2013 16:11:54 +0000 Thank you Richard and Megan for your posts, yes i am hoping that Mum will be settled in a lovely nursing home and that the family can visit her there over Christmas, she is having a blood transfusion today this might help her feel better, after her discharge from hospital i guess that little else will be done for her unless infection starts up,…[Read more]

]]> 229d921cdc52636bff45db2b5744a3d7 https://forum.myeloma.org.uk/activity/p/178/#acomment-212 Thu, 12 Dec 2013 19:58:07 +0000 Hi Eve, thank you for your reply, Mum had blood transfusion today, she is not being offered any other treatment just dexy twice a week and Dad is 82 and can’t cope with having her home, i have offered to move in for a while to help and will wait to see what they would like as funding has been agreed from the hospital for nursing care, she is on…[Read more]

In reply to - san started the topic Mums struggle in the forum End of Life and Grief What can i say, my poor Mum is in hospital with no further treatment offered except some radiotherapy on her hip and some dex a couple of […] ]]> af261dcd3ca402eb2124d61833a11396 http://www.myeloma.org.uk/forums/topic/mums-struggle/ Wed, 11 Dec 2013 19:56:58 +0000 What can i say, my poor Mum is in hospital with no further treatment offered except some radiotherapy on her hip and some dex a couple of times a week, she is so sad we don’t know what to do to help her through this awful bit, her pain is better managed but her mobility is poor due to the poorly hip, a nursing home has been mentioned now, she is…[Read more]

]]> 9ad91ff8a7d8d5cda9567a16675f7f44 http://www.myeloma.org.uk/forums/topic/revlimid-continues-to-work-its-majic/#post-111247 Sat, 07 Dec 2013 16:43:09 +0000 So pleased for you David you are doing so well, some people seem to be sensitive to it and it works so quickly for them, it did for my Mum too, take care and keep going San x

]]> 7f7ed8776f34b982909ac26d3f583a79 https://forum.myeloma.org.uk/activity/p/95/#acomment-100 Sat, 07 Dec 2013 16:32:17 +0000 Well Tom my Mum started Velcade and dexy she only had two injections but it started to work, they gave it sub cutaneously not i/v as it appears that there is less peripheral neuropathy if its given that way hope it helps to know that, sorry that you have had that news now but you will kick it back again Tom and with your wonderful attitude…[Read more]

In reply to - tom started the topic It's Back in the forum Treatment Hi everyone Well am sorry I have to tell you my Myeloma has kick started itself back into our life’s . After four years of remission I got the results […] ]]> caa1ca4132096f36aba57e0dadd549bb http://www.myeloma.org.uk/forums/topic/introducing-myself-and-marc#post-87663 Mon, 27 May 2013 17:47:44 +0100 Hello Pauline and Marc so sorry to hear your news it must be hard for you both as Marc was you carer, i found this forum so helpful, such lovely people and so much knowledge and support, as you read peoples stories you will learn and of course good advice is given, take care and i so hope that the treatment gets this myeloma under control really…[Read more]

]]> e12862d84880ac0894b4d8489a9a6c66 http://www.myeloma.org.uk/forums/topic/plasmapheresis#post-102623 Mon, 27 May 2013 17:43:43 +0100 Hi Richard, have you spoken to nurse Ellen about this she may be able to throw light on the treatment for you, i hope to ring her tomorrow re my Mum, still jaundiced and we have to see the gastric consultant tomorrow, guess its her liver as there are no gallstones, and naturally no chemo at the moment, she has had 3 cycles of revlimid cyclo and…[Read more]

]]> 041bd54cf8edcab139414f7558f614ce http://www.myeloma.org.uk/forums/topic/myeloma-bubble#post-106604 Sat, 25 May 2013 22:39:14 +0100 Hello Eve and Slim wishing you the best holiday, take care and yes build up your strength and have great fun, San xx

]]> e93c768a8cd4a33d893f6913040d3191 http://www.myeloma.org.uk/forums/topic/sct-not-worked-help/page/2/#post-102561 Fri, 24 May 2013 20:09:46 +0100 Hello Chris, is this new one as mentioned on the myeloma website today something that you could ask about, you would need the clinical trial and it is for relapsed myeloma?? best wishes San xx have a good bank holiday weekend everybody x

]]> 0e7c3ce72802083ef7cdd3f3c0e8ce35 http://www.myeloma.org.uk/forums/topic/here-we-go-again#post-87632 Tue, 21 May 2013 22:33:52 +0100 Hello Dawn, just wanted to send good wishes to you, take care, and i am sure that you will benefit from the help on this forum as you make sense of what is happening to you and your treatment options, San x

]]> 706902e83652027777a92118d53230b2 http://www.myeloma.org.uk/forums/topic/lightly-chained-to-the-roller-coaster-ride/page/4/#post-95002 Sat, 18 May 2013 20:04:08 +0100 Hi Helen i know that Mum feels sick on her cyclo day even with anti sickness tablets and teary after a couple of days after dexy, but it may not affect you in the same way, hope that your energy levels stay ok , take care and good luck on your new regime, and no more poking yourself in the eye!! love San x

]]> fb732ac24c5ac6598e9f5cd0758e2f17 http://www.myeloma.org.uk/forums/topic/sct-not-worked-help#post-102543 Fri, 17 May 2013 19:51:11 +0100 Dear Christine and Chris, you are so right never give up!!, there will be something out there to help i am sure, keep pushing and i so hope that you find the best way forward soon, wish that i knew more in order to help out, love San

]]> 55e26451c2951eff9be59c1fafc3b6c8 http://www.myeloma.org.uk/forums/topic/ctd-and-depression#post-95251 Thu, 16 May 2013 22:15:14 +0100 Hello Georgie, my mum has mm diagnosed 12 weeks ago and suffers greatly with fatigue, it is so hard because it takes every ounce of energy just to get washed and dressed, she said today to the rowcroft nurse that she so wants to do more, she is tearful at times and needs to talk it through, the nurse explained that the myeloma itself and the chemo…[Read more]

]]> 696dfa71a4ae74332dad57f940d6d609 http://www.myeloma.org.uk/forums/topic/jaundice#post-105276 Wed, 15 May 2013 18:31:26 +0100 Ahh thank you Ellen, today Mum had an ultrasound abdomen but no gallstones or obstruction so as you say may be the liver itself, we are waiting to hear re the 4th cycle of revlimid, and as you mention maybe a short break and reduced dose, i will let you know as it may help somebody else in the future, poor Mum seems to be beset with problems…[Read more]

]]> c6c1a5951b594c98add4d10a37021c99 http://www.myeloma.org.uk/forums/topic/three-steps-back-and-thumbs-up#post-102517 Mon, 13 May 2013 23:01:21 +0100 Dear Helen, sorry to hear that you are having some difficult side effects, and Dai hope that all goes well on your regime too, my Mum was seen in clinic today her protein is down from 1000 to 11 the Consultant said, so the RCD is doing its work she has had 3 cycles so far but we are waiting for todays bloods as she is still a bit jaundiced so not…[Read more]

]]> 00a8eeeb004ea4d6e0791fb0c8d9eefb http://www.myeloma.org.uk/forums/topic/revlimid1368206134#post-102502 Sat, 11 May 2013 22:54:41 +0100 Well Helen, i have heard that its not always sunny but i don't believe it!, we love Sennen and have been lucky when we go too, its a smashing county, but last week here in Devon it was lovely too so can't complain, wishing you a super warm summer in Northumberland, take care, love San

]]> fcef5d20558c98f24adab3a5948ff7a7 http://www.myeloma.org.uk/forums/topic/revlimid1368206134#post-102496 Sat, 11 May 2013 22:46:43 +0100 Hi Ali, yes it is torture for our Mums waiting around at clinic, this is not a kind illness and every day something seems to crop up, sadly i am waiting for a bit of light at the end of this tunnel for Mum but so far its one step forward and two back! still not sure why the jaundice, bloods have been taken and we will see on monday when we see the…[Read more]

]]> e6e9b043374ce4b4fab7acbc90d5b22d http://www.myeloma.org.uk/forums/topic/revlimid1368206134#post-102500 Sat, 11 May 2013 22:35:38 +0100 Hi Helen, glad that you had good weather, its always sunny in cornwall ha! hope that you feel better after your hol, San x

]]> ed716608d157f32edbe540968dbe5e5a http://www.myeloma.org.uk/forums/topic/mum#post-87604 Sat, 11 May 2013 21:20:08 +0100 I am so sorry Hawkeye, love to you at this sad time, San xx

]]> aa3450e795e477e2280cf003f61b0d7a http://www.myeloma.org.uk/forums/topic/my-brother#post-87612 Fri, 10 May 2013 18:27:23 +0100 So sorry to hear your sad news, i do hope that you find answers to your questions soon, and wish you all the best with your run, San.

]]> 9bf1c94e31dd6af87a5d5f2aff4c5bc6 http://www.myeloma.org.uk/forums/topic/revlimid1368206134#post-102494 Fri, 10 May 2013 18:21:20 +0100 Hi Ali, well i am off to clinic on monday with my Mum as she too is on the revlimid trial and i will quiz on this too as Mum needs to make and informed choice, i too read this recently, my Mum is jaundiced at the moment and clearly something is going on maybe a drug reaction but they are going to ultrasound her abdomen, gosh know what you mean…[Read more]

]]> 949c6a6070055c4d9a830e4d460f0fa0 http://www.myeloma.org.uk/forums/topic/supposed-to-have-started-2nd-chemo-today#post-107101 Thu, 09 May 2013 22:38:12 +0100 Ahh dear of you, its hard and the drugs may make you feel emotional as well as this illness, but on here you will meet some great folk who have been through it all and their stories are inspiring and practical and may give you heart, take care and just look after you health best wishes to you and your family, San.

]]> dda173d7f1d681517bfc23618523f857 http://www.myeloma.org.uk/forums/topic/jaundice Thu, 09 May 2013 18:23:31 +0100 Hello, i wonder if anyone has had jaundice or knows of this whilst on RCD XL clinical trial, looks like it could be the Revlimid re side effects, poor Mum has developed this in the last couple of days and so we rang the ward today and are going to hospital tomorrow to have bloods and see the Dr there, thank you San x

]]> d32f60a3d5a684edfc416f6aabe06fe0 http://www.myeloma.org.uk/forums/topic/supposed-to-have-started-2nd-chemo-today#post-107099 Tue, 07 May 2013 20:24:14 +0100 Ahh good luck Richard, i am sure that they will keep a close eye on you, take care and so hope that this works for you San.

]]> 45eba8260572d5e8169f40586e8e9f07 http://www.myeloma.org.uk/forums/topic/prioritising/page/2/#post-95191 Fri, 03 May 2013 16:15:31 +0100 Hi Jill, sorry to here that Mum is low in her mood at times the dex makes my Mum teary and just the whole experience really, all the we can do is listen, give love and be patient, however there are counsellors who could help, they are attached to the service and sometimes its easier for our loved ones to talk to somebody else, this might be…[Read more]

]]> 6985e606923d84e9ff111e7208e97516 http://www.myeloma.org.uk/forums/topic/lightly-chained-to-the-roller-coaster-ride/page/3/#post-94993 Fri, 03 May 2013 13:46:50 +0100 Hi Helen still sunny here!! maybe cloudy saturday then good they say so enjoy, anyway you will have fun whatever the weather i am sure, happy for you re your back not being MM and just a slipped disk hope that you feel better today, take care San xx

]]> d7b952206e20c75f6246907e69f835c6 http://www.myeloma.org.uk/forums/topic/prioritising#post-95189 Fri, 03 May 2013 13:36:35 +0100 Hi all you are all so inspiring to me and i pass this on to Mum who has come home and is doing well with Dad who is so supportive of her and he was one who shunned illness so its been hard for him too. They to are considering and cleaner and having someone to do a bit of gardening, and it great if the person coming in is a cheerful, wishing you…[Read more]

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