Hi. I’m not the one with myeloma but my husband was diagnosed at the start of January after having had a plasmacytoma diagnosed and treated last year. I think any pain should be taken seriously, so don’t wait until your next appointment with the consultant but get it checked out. If you have a clinical nurse specialist, give her/him a call on…[Read more]

That’s great news, Fiona! I’m so pleased for you both. It’s wonderful to discover that what you have been hoping for is actually happening.

I’m sure your husband is young and handsome. They stay that way in our eyes at least!  😉

Enjoy the moment and thanks for posting your encouraging news.

Sarah x

Hi Julie,

My husband’s surgery was carried out at the Nuffield Orthopaedic Centre in Oxford. They have a number of spinal specialists there, but his consultant is Jeremy Reynolds. Our local hospital felt that he needed a level of specialism they didn’t have, as their spinal surgeon was more experienced in lower spine.

I do hope you can make some…[Read more]

Gill,

I have started a reply to you a number of times but nothing I can say seems adequate.

Thank you so much for sharing yours and Stephen’s story. My heart goes out to you. I hope that over time you can gain some comfort by knowing that you made the best decisions for both of you, and that you can draw on the good and happy memories of your…[Read more]

Hello J,

I don’t know if anything I can say is helpful, but my husband had collapsed vertebrae in his neck last year (C6 & C7). At that stage he had not been diagnosed but, after a lot of investigation, a plasmacytoma in his neck was confirmed, and this has now progressed to a diagnosis of myeloma. He had been having treatment for severe back…[Read more]

Great news! Long may it continue.

Thanks for sharing this encouragement.

Sarah

Thanks for your replies, Angela, Megan, Helen and Fiona,

You’ve given me a lot to think about. I think the main message that comes across from everyone who has replied is that it’s sensible to keep my options open. I do have virtually all last year’s annual leave to use, as well as this year’s, so that gives me a bit of  leeway. My GP is…[Read more]

Hi Graham,

Good to hear from you. Well done on keeping positive. I hope your recovery from SCT is going well and you can feel yourself getting stronger.

We’ve had a much better week. M’s consultant suggested he took the cyclophosphamide over 5 days rather than all at once and he hasn’t felt sick since. He’s been eating well and has generally…[Read more]

Haha!!

I had guessed it might be something like that, but thanks for the laugh. I’m sure if you covered your face with enough gunk it would have the same effect and keep the germs at bay – plus your skin would be glowing! On second thoughts, maybe the Mund Schutz would be the best option 😉

A packet or tube of some gunky stuff to put on your skin to reveal the beauty beneath! 😉

Thanks Jean,

I appreciate you taking the time to get back to me on this. I can really relate to not being able to concentrate and worrying about going off to do other things. I know I tend to make quick decisions about all sorts of things so I’m deliberately holding back at the moment.

I hope Frank continues to improve and that you find…[Read more]

Thanks Vicki,

It really helps to have encouragement from others who know what it is like. Prawns make me nervous at the best of times, so no trouble steering clear of those. I’ve told M that I think the treatment is tiring – for me! We were at the hospital twice yesterday, and the second appointment was about 90 mins late. I always go prepared,…[Read more]

Hi Harmony,

I’m so sorry to hear that things are difficult for you and you don’t feel supported at home. I think everyone has different ways of dealing with things that are hard for them, and maybe your husband can only cope if he pretends it isn’t happening. My husband’s family is very much like that and I’m trying to get beyond frustration to…[Read more]

Thank you Peter. It’s good to hear from you. What is really helping me at the moment is reading all the positive stories from people like you who have been living with myeloma and its effects and still getting a lot out of life. My husband is now into the 3rd week of his first cycle of chemo. He’s been out of hospital for a week and it has been…[Read more]

I’m quite relieved to find this post as my husband has been hiccuping madly from 24 hours after his second dose of chemo (Velcade, cyclophosphamide and prednisolone). It woke us both up a few times in the night. In his case, though, it’s not just irritating, it hurts because of the jolting to the fracture in his spine.  He has chemo clinic on…[Read more]

Thanks Nick!

Angela – hope you have a lovely weekend that will keep you going for  the weeks ahead. Time spent with friends and family is precious and time well spent. Hope you have lots of laughs.

Sarah

Well – M is home at last. Now I have to get to grips with things on a practical level, but I think we can relax a bit more in our own home, even though he did have excellent treatment in hospital and his pain is now under control. The big bottle of handwash is by the front door for anyone who visits, and we are now equipped with raised loo seats,…[Read more]

Hi again Harmony,

I’m pleased you’ve found the mindfulness techniques useful. They emphasise that it is a practice and you have to keep practising! One of the key principles I learnt was to be kind to yourself if you don’t feel you’re doing it very well and look at the way your mind wanders with a kind curiosity.

Don’t worry too much about the…[Read more]

Hello everyone!

Thanks so much for your replies and for telling me about your experiences Andy, Nick, Eve, Jean, Angela, Helen and Mavis. I really appreciate your help and good wishes. Angela – it really cheered me up to think of you going out and having a good time and enjoying life – particularly the karaoke. It has helped me to feel less…[Read more]