Myeloma Forum | PaulCreek | Activity https://forum.myeloma.org.uk/members/OutdoorsPaul/activity/ Activity feed for PaulCreek. Sat, 11 Apr 2026 12:16:26 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 15587c102ce76a9e0190ea65c8fd75b5 PaulCreek replied to the topic Sad news in the forum Under 50s http://www.myeloma.org.uk/forums/topic/sad-news/page/2/#post-107021 Thu, 18 Oct 2012 14:03:08 +0100 I just wanted to say thanks again for all your kind words. I have been looking regularly at this discussion forum and it warms my heart to know that Paul was thought of so highly by so many people. Thanks especially to Steve: you will be pleased to know that on the day Paul was admitted to hospital this last time we'd been out for a 5 mile walk…[Read more]

]]> 4a054650535f2896c074a2e96431b3b5 PaulCreek replied to the topic Sad news in the forum Under 50s http://www.myeloma.org.uk/forums/topic/sad-news/page/2/#post-107019 Mon, 15 Oct 2012 15:23:38 +0100 Thank you so much to everyone for your kind comments. It is warming to know that Paul was in touch with so many people and offered support to so many of you. That was Paul – always helpful and always on the look out for who needed rescuing. He was 'Our hero' to me and Chloe, the foster child we look after every few weeks.
With love to all of you.…[Read more]

]]> 39df513f28bdadbdc6f0071a61a3102e PaulCreek started the topic Sad news. in the forum Under 50s http://www.myeloma.org.uk/forums/topic/sad-news Fri, 12 Oct 2012 12:39:41 +0100 I am really sorry to have to share the news with you all that my 'Outdoors Paul' died suddenly yesterday. He had his autograft in July and seemed to be recovering well. Then he had a high temperature a couple of weeks ago and had to be admitted to hospital. The doctors struggled to control the temperature with antibiotics and we found out on…[Read more]

]]> 61c62c692c7302eba84adad8801a4bf8 PaulCreek replied to the topic Remission in the forum General http://www.myeloma.org.uk/forums/topic/remission1348093877#post-93534 Thu, 20 Sep 2012 14:47:58 +0100 Sarah
Great news,its time to let your hair down abit;-)
cheers Paul

]]> a548197869c18d44a2cd312a1d029d10 PaulCreek replied to the topic Seriously concerned in the forum Carers http://www.myeloma.org.uk/forums/topic/seriously-concerned#post-106454 Mon, 17 Sep 2012 16:03:23 +0100 Hello Gail
I am so sorry to hear of Howards passing,your not alone we are all here for you…If you need to talk just log on and tell us,someone will respond!
You look after yourself
xxxxPaul

]]> ca4bbc51685f50c16a333fb0ceec50a3 PaulCreek replied to the topic Stephen has gone in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/stephen-has-gone#post-107780 Wed, 12 Sep 2012 15:32:46 +0100 Hi Gill
So sorry to hear about Stephens passing,if you want to talk we are all here for you.
Big hug PaulXX

]]> cb93e12e16c547ce625c008983e4456e PaulCreek replied to the topic Constipation!!! in the forum Side-effects http://www.myeloma.org.uk/forums/topic/constipation1347399927#post-104796 Wed, 12 Sep 2012 15:22:55 +0100 Hi Mavis
I have had similar "experiences" when in hospital (its the food and less mobility),when discharged I tend to eat prunes in my cereal with some all bran,fresh coffee in a morning,lots of fresh green vegetables and have tried the senna capsules.Always works after a few days.
I agree with Rose about the pain killers check with the…[Read more]

]]> d71c54dd1d934e3ab1421e0c77abec9b PaulCreek replied to the topic You Are My Bower in the forum Off topic http://www.myeloma.org.uk/forums/topic/you-are-my-bower#post-110487 Mon, 10 Sep 2012 13:35:02 +0100 Dai
A wonderful poem and so soothing to the soul,thanks for sharing it with us all.
cheers Paul

]]> f8469b404cd77c13e58a31f2aed3a3c6 PaulCreek replied to the topic No really - this is good news in the forum Off topic http://www.myeloma.org.uk/forums/topic/no-really-this-is-good-news#post-110466 Fri, 07 Sep 2012 14:45:01 +0100 David
What great news!! i am so glad that treatment is lined up for you as well.Thats made my day:-)
cheers Paul

]]> b88938b6347103f691d68a85b6c1ee8d PaulCreek replied to the topic It's all starting! in the forum Treatment http://www.myeloma.org.uk/forums/topic/its-all-starting#post-100439 Fri, 07 Sep 2012 14:34:21 +0100 Hi Tina
Good to hear its all underway,keep us all posted.
cheers Paul

]]> 08f31a24e954e34da1b3d940a4c3204e PaulCreek replied to the topic Hello again to all in the forum Treatment http://www.myeloma.org.uk/forums/topic/hello-again-to-all#post-100371 Tue, 04 Sep 2012 18:52:35 +0100 Hi jacqui
I to have Lightchain Myeloma and have been told a similar things to you,I to would go for the clinical trial.I am due for a "allo-graph" in December and also been offered a clinical trial for that.
take care Paul

]]> 47f386d296c33800b30093772662a96a PaulCreek replied to the topic 12 months since my stem cell transplant in the forum General http://www.myeloma.org.uk/forums/topic/12-months-since-my-stem-cell-transplant#post-93427 Mon, 03 Sep 2012 12:00:54 +0100 Hi Wendy
Happy 1st Anniversary Immune system! enjoy the sunshine Wendy.
cheers paul

]]> 704c756aaaf7b1b074ad9263ed081873 PaulCreek replied to the topic Paraprotein news in the forum General http://www.myeloma.org.uk/forums/topic/paraprotein-news#post-93405 Sun, 02 Sep 2012 19:11:09 +0100 Hi Andy
Stick with it mate because it has taken me 3 different sorts of treatment in 12 months to get me to and through the SCT.They will get you to a point where you are ready for SCT.
Enjoy the lakes and maybe a Guinness or two?
cheers paul

]]> 1485d942caf60f5e91f564a374cd839c PaulCreek replied to the topic Good News in the forum General http://www.myeloma.org.uk/forums/topic/good-news/page/2/#post-93396 Sun, 02 Sep 2012 19:03:04 +0100 Hi Eve & Slim
Fantastic news! I bet a large weight has been lifted from both your shoulders.I hope you both have a fantastic holiday:-) 🙂
cheers Paul

]]> f4824460b7068c52613047aade1b972c PaulCreek replied to the topic Stem cell transplant in the forum Carers http://www.myeloma.org.uk/forums/topic/stem-cell-transplant1346372750#post-106471 Fri, 31 Aug 2012 14:53:16 +0100 Hi Cathy
I had my SCT 30 days ago so still very fresh in mind.Your husband is in isolation(a single room) which is hard,nursing staff will be in checking but also keeping contact to a minimum.Try to see this as a good thing as it will help to keep infections brought in to a minimum in my opinion.My appetite took a noise dive after the…[Read more]

]]> 23e0d388a46af4e772be883b160b8327 PaulCreek replied to the topic Radiotherapy in the forum Treatment http://www.myeloma.org.uk/forums/topic/radiotherapy1346377586#post-100387 Fri, 31 Aug 2012 14:28:52 +0100 Hi Gill
I had radiotherapy to neck/spine area when first diagnosed,this came up looking like bad sunburn.Nursing staff did fore worn me and gave me some cream for it.It went fairly quickly but has left me with a brownish patch on my throat area (looks like a permanent tan!).
take care paul

]]> 9e8aa7a45bca838e0b214adfd61a6cdf PaulCreek replied to the topic And the GOOD news is in the forum Off topic http://www.myeloma.org.uk/forums/topic/and-the-good-news-is#post-110445 Sat, 25 Aug 2012 20:18:17 +0100 Hi David
Sorry to hear the recent news,you are such a strong person and have lots of character!;-) .Its time to deep deep again and Vasbyte my friend.
Paul

]]> 2694c3ba4e6f5b7f815cc0321bc281b9 PaulCreek replied to the topic Not Looking Good in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/not-looking-good#post-107731 Fri, 24 Aug 2012 16:17:14 +0100 Hi Gill & Stephen
So sorry to hear about Stephens on going problems,just to say that I am sending lots of positive thoughts to the both of you.Take care with all the driving Gill.
love PaulX

]]> 278d2561a5a7264abfc5b9daac2f28ee PaulCreek replied to the topic Dad's SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/dads-sct#post-100147 Thu, 23 Aug 2012 20:17:39 +0100 Hi Chloe
My consultant began the process of looking for a match once we knew that this was the route i was to travel.I dont know how long it took really but it did not seem that long,sorry could not be more exact.
take care Paul

]]> 09759b2e8545f17ec08a1dfd65b6c8e1 PaulCreek replied to the topic Dad's SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/dads-sct#post-100145 Wed, 22 Aug 2012 20:10:52 +0100 Hi Chloe
By meaning "mini SCT" and looking for a match I presume your dad is having what is called an Allo graph transplant.I am going forward for my allo graph within the next 6 months and an excellent match has been found for me.You should get an apt with the consultant heading the team to discuss the procedure and answer questions.My…[Read more]

]]> cb8263907e886f41c86afa802decec40 PaulCreek replied to the topic Home after SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/home-after-sct#post-100120 Mon, 13 Aug 2012 13:51:44 +0100 Hi Mavis
Yes i read jets blog/post,she is truly an inspiration and provides insight into my next step.
cheers Paul

]]> 64e01d4c59b81355abfc50c2981f28d2 PaulCreek replied to the topic Home after SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/home-after-sct#post-100112 Fri, 10 Aug 2012 16:52:05 +0100 Hi Michele
I to am similar about the clothing I have used while being in hospital,even thoe its been through the wash its the associations they have.I am sure that it will wear off in time.Taken the dog out this morning with my wife Rachel and have now spent at least 3hrs snoozing!Where we live is quite rural so there is little public…[Read more]

]]> 566ed5fa3fe490f8ff3867797fbbd182 PaulCreek started the topic Home after SCT. in the forum Treatment http://www.myeloma.org.uk/forums/topic/home-after-sct Fri, 10 Aug 2012 13:13:55 +0100 Hello all
I am back home after my SCT which took 16 days,I seem to have got through it very well with no real sore throat issues and only a little bowel problem.I did get the obligatory infection/high temp which got upto 39.5 but antibiotics dealt with that.
I was given 2 bags of platelets to assist when my body count was at its lowest…[Read more]

]]> 6a810f322989a06ddf62881ac9140dc3 PaulCreek replied to the topic Stem Cell Harvest & SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/stem-cell-harvest-sct#post-100004 Fri, 27 Jul 2012 12:00:54 +0100 Hi all
Thanks for the kind words of support,well it happened yesterday as planned and the smell of sweet corn followed.
I am unsure if there is a second batch in cold storage at this moment in time ,they used 8 bags so I suspect I got it all back but I will ask.I am struggling with internet connection but will up date when I can:-D
cheers Paul

]]> 9d153ffd9017b4ab42b293107207721c PaulCreek started the topic Stem Cell Harvest & SCT. in the forum Treatment http://www.myeloma.org.uk/forums/topic/stem-cell-harvest-sct Mon, 23 Jul 2012 14:04:45 +0100 Hello all
Its been a while since my last post but I have moved forward with my treatment.2 cycles of DT PACE put me into a position for me to have my stem cell harvest.I spent 2 days over in Leeds and managed to yield 4.2 so enough for the transplant.This week I am hopefully going into hospital for my SCT,need to phone the ward Tuesday…[Read more]

]]> dd63c9fcaf229995bbac0563a892677a PaulCreek replied to the topic DT PACE in the forum Treatment http://www.myeloma.org.uk/forums/topic/dt-pace/page/2/#post-99396 Fri, 22 Jun 2012 09:06:05 +0100 Hi Scott
Sorry to hear about the lightchain readings going up,but you are right we just need to carry on fighting and getting on with our life.Hope you had a great time in Spain and I will keep my fingers crossed for you.
cheers Paul

]]> 0c72286ea3d72494bb6d26c684ab5d3a PaulCreek replied to the topic DT PACE in the forum Treatment http://www.myeloma.org.uk/forums/topic/dt-pace/page/2/#post-99394 Thu, 21 Jun 2012 16:21:11 +0100 Hi Carol
Thanks for the lovely post,your horse looks huge! you must certainly have got some strength to ride him and the weather looks good to.
lots love Paulxx

]]> 677a6ebca9bf9b14fc167c75fdfc5fc1 PaulCreek replied to the topic DT PACE in the forum Treatment http://www.myeloma.org.uk/forums/topic/dt-pace/page/2/#post-99391 Thu, 21 Jun 2012 11:20:11 +0100 Hi Carol / Helen
I am coming to the end of my first cycle of DT pace with no real side effects other than feeling tired late evening/early mornings and my hair is disappearing rather quickly.I am due back into hospital next Monday for 4 days chemo and Dex.We have booked a cottage in Alnmouth Northumberland in early July which will…[Read more]

]]> 0de1fc943619a231bae0be3d10c73a0d PaulCreek replied to the topic Brocho - Bridget Rochfort in the forum General http://www.myeloma.org.uk/forums/topic/brocho-bridget-rochfort#post-92884 Mon, 18 Jun 2012 16:32:08 +0100 Siobhan
Really sorry to hear about the passing of your mum,she was so helpful to me when I first came onto the site.
love Paul

]]> ce357e6834540f01ddf85a4a39619b47 PaulCreek replied to the topic Annes Odyssey in the forum General http://www.myeloma.org.uk/forums/topic/annes-odyssey#post-92869 Sun, 17 Jun 2012 16:41:51 +0100 Hi Roy
One word sums it up "inspirational!"
cheers Paul

]]> d3362d1868ae6ba474b981fe29f0fb52 PaulCreek replied to the topic DT PACE in the forum Treatment http://www.myeloma.org.uk/forums/topic/dt-pace/page/2/#post-99388 Mon, 04 Jun 2012 11:41:24 +0100 Hello all
Took the dog out of a walk yesterday and today for 1hr and my legs are starting to feel better.Seem to have put on some Dex weight on again I feel like a budha.
Inst it amazing how the sun and wind on your face just makes things better:-)
cheers Paul

]]> f6f99f9315524f712395d6dc0f3b2047 PaulCreek replied to the topic DT PACE in the forum Treatment http://www.myeloma.org.uk/forums/topic/dt-pace/page/2/#post-99385 Sun, 03 Jun 2012 17:48:42 +0100 Hello All
Got out of Hospital late Friday night after 5 days in hooked up with 3 IV lines.Side effects wise just the usual Dex hiccups and feeling abit tired first thing in a morning.Taking things a little easy this week as 5 days on the ward have made my legs like jelly.So its fingers crossed ! Feeling positive again about meds and…[Read more]

]]> cf9d19e2334b9ba1ef682670d29709eb PaulCreek replied to the topic DT PACE in the forum Treatment http://www.myeloma.org.uk/forums/topic/dt-pace#post-99377 Fri, 25 May 2012 12:54:11 +0100 Hello all
Really appreciate the support!
Dai-Thanks for the article, I have found it very helpful and its injected some positive juices back into me.

Andy-Thanks for the insight on your stay in hospital,it does seem we are similar in our issues.
Going to wales this weekend and weather is good so looking forward before hospital on…[Read more]

]]> 3141ead470fa041ea645653e78d5fb81 PaulCreek replied to the topic DT PACE in the forum Treatment http://www.myeloma.org.uk/forums/topic/dt-pace#post-99371 Thu, 24 May 2012 17:00:50 +0100 Thanks Eve & Jo for the support, its the first time since diagnosis that I have felt really p….. off with it all.I am trying to remain positive but as we say in Yorkshire "By gum" its tough at times.:-)

]]> b83d960c2dc43a7baa5ab31c4bafa965 PaulCreek started the topic DT PACE. in the forum Treatment http://www.myeloma.org.uk/forums/topic/dt-pace Thu, 24 May 2012 12:03:21 +0100 Hello all
Unfortunately my last lot of chemo did not have the desired effect on my Myeloma as it bounced back again.I was on valcade, Dex, Bortizombe.My Myeloma seems to get down to about 34 (Bence jones count)then comes straight back with an increase in count.Now being put on DT PACE which means 4 days in hospital and 3 weeks out on a…[Read more]

]]> 58034e83e643dc8cb17449070b4f7ee9 PaulCreek replied to the topic Keep Calm & Carry on in the forum Treatment http://www.myeloma.org.uk/forums/topic/keep-calm-carry-on#post-99348 Mon, 21 May 2012 20:05:55 +0100 Dai
Fantastic news mate keep up with the positive vibes.
cheers Paul:-D

]]> 17d21002df33c7d04916c7d606bd5315 PaulCreek replied to the topic New to the site in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-the-site/page/3/#post-86053 Sat, 19 May 2012 17:54:14 +0100 Hi Ali
Sorry for late post as I have just spent a week in hospital.
Before anyone goes for a Stem cell transplant the medical team need to check that the persons heart,lungs are in working order,so various function tests are carried out and results sent to the consultant.
Cyclo priming lasts for 12hrs and you have various bags of chemo…[Read more]

]]> 38638538a99c36943fadb416b8bbac12 PaulCreek replied to the topic New to the site in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-the-site/page/2/#post-86051 Mon, 14 May 2012 08:35:48 +0100 Hi Vicki/Colin
Yes i still feel tired but once up and about with exercise you feel much better.If i am tired i just have a snooze.I have been off work since last Aug and my employers are very supportive.
cheers Paul

]]> 17f3a3c8e6f3132d248eb7443ac1b998 PaulCreek replied to the topic New to the site in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-the-site/page/3/#post-86055 Sun, 13 May 2012 18:35:53 +0100 Hi Vicki
AS regards managing on a day to day basis my experience has been it depends at what point in the cycle you are and what meds you are on.You and Colin should start to notice a pattern of how Colin feels taking certain meds.
I.E When I take Dexamethasone over 4 days,day 1 is ok no problems..but days 2-4 my sense of taste goes out…[Read more]

]]> c7276fad0c6281815727e1ab4609c36b PaulCreek replied to the topic New to the site in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-the-site/page/2/#post-86049 Sun, 13 May 2012 16:06:59 +0100 Hi Vicki and Colin
I was diagnosed in Aug 2011 after my wife and I returned from one of our regular trips to Northen Scotland,cycling,camping,hill walking sort of stuff,I am 40 years old so one of the younger end on the site.
I cant remember what my initial counts were as my head was all over the place after the diagnosis.(I…[Read more]

]]> 93651d73ed0c5ffbb6b01ded2700e44d PaulCreek replied to the topic New to the site in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-the-site/page/2/#post-86047 Fri, 11 May 2012 13:32:41 +0100 Hi Vicki
I was diagnosed in Aug 11 with MM the Bence jones type,if you have any questions i will try to help.
cheers paul

]]> 8060d0a31cde4ecbb4e23fb15cfde653 PaulCreek replied to the topic More later but... in the forum General http://www.myeloma.org.uk/forums/topic/more-later-but#post-92637 Wed, 09 May 2012 14:27:41 +0100 Hi Dai
Glad to read you are back home and building your strength back up.
cheers Paul

]]> fc2e75bb5479732863f1bce8bbd85120 PaulCreek replied to the topic I'm back. in the forum General http://www.myeloma.org.uk/forums/topic/im-back#post-92615 Tue, 01 May 2012 18:59:22 +0100 Andy glad to see you back on track again.
cheers Paul

]]> 58fce67786c505a450dbc7d39f0ec4fb PaulCreek replied to the topic POSTBONED in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/postboned#post-107587 Fri, 27 Apr 2012 18:16:23 +0100 Eve
I am so sorry to hear this news,my thoughts are with you and your family.
love Paul

]]> d360c6e252c509a68048df6481a7bdcc PaulCreek replied to the topic My husband has just been told he has got myeloma!! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/my-husband-has-just-been-told-he-has-got-myeloma/page/3/#post-85893 Fri, 27 Apr 2012 09:05:56 +0100 Hi Pete
Glad you now active on the web site.When first diagnosed I had a tumor in lower neck/top of back area which was treated with radiotherapy so far successfully. medical team were worried it would cause compression on spinal cord and loose mobility.As i say this has not happened and it has been treated.
MM also causes bone damage to…[Read more]

]]> 7d98ce730c5fa08ff29132e3d5d7c414 PaulCreek replied to the topic My husband has just been told he has got myeloma!! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/my-husband-has-just-been-told-he-has-got-myeloma/page/3/#post-85890 Thu, 26 Apr 2012 20:40:48 +0100 Hi Pete/Ann
I was diagnosed with Myeloma last Aug which started with back pain (which i still get).I am 40 so one of the younger end on the site.Just completed 4 cycles of PADS and getting ready for Stem cell transplant (SCT)in early June.If you have any questions about your Myeloma ask you're medical team,and of course this site…[Read more]

]]> 90e064027137bbf97b7593b562640b49 PaulCreek replied to the topic Another 3 months in the forum General http://www.myeloma.org.uk/forums/topic/another-3-months1333128671/page/2/#post-92420 Thu, 26 Apr 2012 16:03:40 +0100 Hi David and Wendy
Great to hear both you're good news keep on keeping on!
cheers Paul

]]> 11e2c5eeb450e46bb670a9ef39ad0114 PaulCreek replied to the topic Pesky Paraproteins in the forum Treatment http://www.myeloma.org.uk/forums/topic/pesky-paraproteins#post-99168 Wed, 18 Apr 2012 15:43:03 +0100 Hi Lynda
I am on PADS induction which includes Valcade this "mixture" has brought down my PP from 2300 down to 37 after only 3 cycles so it works. (I got the myeloma bounce when I came out of remission i.e it came back during Myeloma 11 trail).So pass onto Pete to stay optimistic.
I am now lined up for stem cell harvest 23/24/25 may…[Read more]

]]> f48a2c564efbf373370186a731f4c82b PaulCreek replied to the topic Newcomer... in the forum Newcomers http://www.myeloma.org.uk/forums/topic/newcomer1334519210/page/2/#post-85803 Wed, 18 Apr 2012 10:13:07 +0100 Hi Tony
I was diagnosed in Aug 11 with light chains myeloma (Bence Jones)type,started off on the myeloma 11 trial which worked well and got me into remission but unfortunately my myeloma came back.Now on PADS induction and its working as my levels have come right down.I am due for Stem cell transplant (SCT) early June and allo graph…[Read more]

]]> 16a7986c43a403119b2764c1a8b9af11 PaulCreek replied to the topic Hi Ho.... Hi Ho... It's off to work we go... in the forum General http://www.myeloma.org.uk/forums/topic/hi-ho-hi-ho-its-off-to-work-we-go#post-92474 Sat, 14 Apr 2012 18:17:27 +0100 Hi Helen
The "right of the ostrich" love it….!:-D I may use that right at some stage myself.
keep us up dated
cheers Paul

]]>