That’s great news, Maureen. I’m so pleased you’ve both got something positive to focus on now.

I’ve been quiet but I’ve been lurking to see how people are getting on.

Sarah x

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

Thank you Mavis and others,

Mark’ s thanksgiving service was yesterday. I am still stunned by all the amazing support. There were over 200 people crammed into our church – standing at the sides and back. We had afternoon tea afterwards, where the buffet I had ordered for 100 seemed to feed 200, with some left over, and people stayed for ages in…[Read more]

Thank you all for your kind words.

I’m working my way through that limbo period before Mark’s funeral and thanksgiving service next Tuesday. Each day is filled with happy memories and the heavy sadness that comes from knowing that the story of our life together has ended – for now.

Mark left me  a gift in having worked out his thanksgiving…[Read more]

Oops – accidentally posted before I completed the message.

Did they use cannulas in your arms? M has an apheresis line (like a Hickman) in his chest now and it was put in specifically for the purpose of harvesting the stem cells. Until last Weds he had a picc line, but that’s no good for a harvest, so they interrupted his 4-day chemo (half bags…[Read more]

Thanks Mike

Well done on a successful and speedy harvest. We’re going to the JR too, so it’s extra helpful to know what to expect there. Do we need to take food and drink, or will they provide my husband with something? It’s different wherever you go. If you sit down for more than a couple of minutes in the Day Therapy Centre in Swindon, where he…[Read more]

Thanks very much David and Rebecca,

I think I’m more worried about the journey than the harvest – but of course I only have to drive! The roads aren’t that great, so I’m glad we can take it steadily.

My husband has had GCSF before, so has had some experience of the aches and pains. No-one warned him beforehand  and he was quite worried that he…[Read more]

Hi Nikki!

I’m sorry you have all this to deal with. Just a thought – have you been allocated a key worker? It’s usually a clinical nurse specialist or someone with a similar role? If you haven’t, do ask. It might be worth you sitting down with someone like that who can explain things to you and answer your questions. It is really hard to…[Read more]

Sorry to hear this, Maureen,

I can sense your frustration. Don’t undo the good your lovely holiday has done, though.

Velcade didn’t work for Mark either, even with cyclophosphamide and prednisolone, then dex, and we both felt really disappointed that he had gone through 5 cycles of it with no results, and light chains a bit higher then when he…[Read more]

Hi Deborah,

You are about a month ahead of my husband, I think. He’s just gone in today to start his 3rd cycle of DT-PACE on Monday, with stem cell harvest booked for 21-22 July, all being well.

I’ve been saying to him that he is better prepared for the transplant now that he has had the experience of feeling grotty on DT-PACE, which has hit him…[Read more]

Thanks Maureen,

So pleased to hear you’ve had a holiday – and you’re leaving Cornwall before the worst of the rain, I think.

Will be praying for Ian and for you on Monday.

Have a good weekend.

Sarah x

For the first time in over a year we have some progress and some good news. M has had 2 cycles of DT-PACE and is due to start a 3rd next week. He had a bone marrow biopsy last week and this afternoon his consultant told him that there were no myeloma cells in his bone marrow.  Myeloma cells were over 50% in May, the week before his first DT-PACE…[Read more]

Well done! At least you know for next time that it’s nothing to worry about.

My hubby didn’t have his. They took him to the mobile up-to-the-minute  machine in the car park, and, because of his spinal damage, they couldn’t get him into the position they needed so had to abandon the effort. The older machine  has been fine before, so a bit of a w…[Read more]

One of the best pieces of advice I was given when my husband was diagnosed was to look at this website for information as so much of what is on the internet is out-of-date and inaccurate. The doctor who gave me this advice said that the picture would look much bleaker if I just randomly trawled the internet as treatments have improved hugely over…[Read more]

Hi  Susie,

My husband has an MRI booked for Friday too. He’s had a few now and the first one was when his initial plasmacytoma was spotted – in a kind of “we don’t know what this is but we’re not happy” way. He says he has always been in head first – I’ve just asked him.

The radiographers are used to people being nervous, so do tell them if you…[Read more]

Hi Sarah,

I don’t think there is any real answer to this. Nurses and doctors can alert you to possible side-effects and your mum might or not experience them. Like everything else in myeloma, side-effects vary with individuals. My husband’s first-line treatment was 5 cycles of Velcade with Cyclophosphamide and Prednisolone. He didn’t experience…[Read more]