Hi Kaye

I am so sorry for your families loss and for the way the Myeloma progressed without being spotted,I personally think people should learn all they can,and not have this blind faith in doctors,at the end of the day,they are just trained people,and family should ask questions,even if it’s only for your peace of mind.

When people are…[Read more]

Occupations have been talked about concerning Myeloma,

If you think about it chemicals exist in basic materials for every day use,for example wrapping on food,which is put into a microwave !!,

Jobs that you have done in your life ,Farmers service Men,anyone who came into contact with Chemicals,I think why there is no direct research into this is…[Read more]

Hi Jan

How are things,!!! I do not post so much now but look in to see how everyone is doing,and looking at your post I thought you needed some surpport at this stage you are at!!!!

The doctors are telling you to prepare yourselfs, and it’s not a bad way to go,because if this does happen at least it will not be such a shock as last time,and…[Read more]

Hi all

My husband Frank was diagnosed with smouldering myeloma in September 2006. He had all the usual. BMB, scans etc. the only treatment he had was Zometa, bone strengthening infusions. Last year in April my husband was turning 70. Although his blood results were good and felt ok his consultant decided to do a SCT. He went through this in…[Read more]

Dear Andy
Looks like it was a very good holiday ….. and thanks for the insurance advice- having been turned down by World First! After 4 years of good cover… I went to ‘Now I cann travel’ and got cover including the myeloma, with 3rd relapsing disease, for £97 so am off at the end of the month.
And David , you seem to be doing well following…[Read more]

Hi James

I know how you feel. Unfortunately the myeloma drugs, including Revlimind, can cause constipation (see Myeloma UK factsheet on constipation). I suffered with severe constipation during my myeloma treatment with CDT, especially during the third and fourth cycles. My regular use of pain killers for a collapsed vertebrae also contributed…[Read more]

Hi Jeff

I would certainly like to reduce my painkillers, although I realise that I cannot manage without some type of pain relief due to the pain around my vertebrae especially when I am tired or have carried out too many tasks during the day. I still have to regularly sit down to relieve back pain. I would love to be able to sleep on my front,…[Read more]

Hi Jeff,
I’ve been using fentanyl patches since my vertebra collapsed some four years ago. Overall, the medication has worked well to reduce my back and rib pain, but initially had to be supplemented by tramadol tablets every day. Like you, I’ve had similar discussions with my consultant and GP about trying to reduce the dose of my painkillers.…[Read more]

Jeff Frank takes the tablets twice a day and they are 75mg. He had horrendous pain from and after the shingles. He said he felt like a gorilla was crushing every bone in his body. Once he started the tablets he felt a lot better but still gets some pain but not as bad as what it was. Consultant said months ago he could have this pain for some time…[Read more]

Jeff not sure if this is related. My husband was prescribed Pregabalin for pain after a bout of shingles. His consultant told him not to stop them unless he discussed it with her. She said he would have to be weaned off them. He got up yesterday and felt terrible (he’s been feeling good for some time). He said he was feeling so weird and no…[Read more]

Hello Everyone,well it’s 6am,and today I am coming to the end of a journey!

Last day to make sure every thing goes right,visited Slim yesterday,and took masses of Sunflowers to line his coffin,if you have followed this journey you will know how much we enjoyed France and the fields of sunflowers,they represent a big part of our lives together,all…[Read more]

Dear Eve,

I’m so sorry to read your news – at least just in time to wish you all the best for the celebration of Slim’s life tomorrow. We’ve never met obviously but you both come across so vividly in your posts. I can see that you were very lucky to have him in your life and he was very lucky to have you there fighting his corner. You must have…[Read more]

Dear Eve
I’m so sorry to hear that Slim has died, he was my travelling companion since diagnosis. You have been such an unwavering, wise and stoical support to him for such a long time, I take my hat off to you.
This disease is so relentless and not for softies, but I often wished he had had an easier path.
I do hope your celebration of his life…[Read more]

Hi Gill

Reading your posting,you could have been talking about Slim, Stephen and Slim must have come out of the same mould. Lol

One of the people from the past described Slim as a gently giant,that was her memory as a little girl.
I had to stop and think about the way she saw him. The last four years took there toll as he fought to stay alive,…[Read more]

Hi Mary

We have lovely nurses on this site Ellen and Maggie,the number is at the top of the page plus it’s free,talk to them,they can send you booklet plus give you lots of information.

When someone is first diagnosed,it’s very hard to take in all the information,I had never heard of Myeloma,try not to go looking on the net until you can have…[Read more]

Thank you all for your condolences

Although expected it still seems so unreal.at the moment I am ok as I have said earlier I have no regrets,it’s a comfort to me that Slim lived and died just the way he wanted to,many people specially in death,do not get the death they wanted,plus many things are left unsaid.

Slim wanted a non religious…[Read more]

Eve, I can completely understand why you feel so numb. Your past few months must have been so emotionally and physically intense caring for Slim. From all of your posts, Slim sounded so positive in his approach to this awful cancer even during his final few months, which would have been because he always had you by his side for the love and…[Read more]

Dear Eve,

I’m so sorry to hear this news.  I hope the love and support of your family and friends will help you to get through the coming days and weeks.

Sarah x

Eve so shocked to hear of Slims passing. My thoughts are with you and your family at this sad time. You were Slim’s rock and I’m sure he was glad that he had you in his corner. My love to you all

Jean xx