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

Sarah x

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

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]

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]

My beloved Mark lost his brave fight on Sunday afternoon, 20 July.  He had been due to go for his stem cell harvest on 21 July and we were determined to work together with the wonderful…[Read more]

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]

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]

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]

My husband is due to have his stem cell harvest 21/22 July. We were warned yesterday by one of the nurses that some people have to go in for more than 2 days – even each day for a week – before enough stem cells are collected. Has this happened to any of you?

As the hospital where he is to have the harvest is over an hour’s drive away,…[Read more]

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]

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]

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]

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

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]

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]

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]

Sarah

Susie’s advice is good, and as I responded to another post with this advice I’ll recommend it to you too.  Macmillan benefits advisors are really helpful and should know about anything that might be available to you. You’ll save yourself a lot of time and stress, I think, if you contact your local one. You can either make an enquiry…[Read more]

Time to really enjoy life again.  Hoping for a really long, healthy and happy remission for Graham and peace of mind for you, Angela.

Sarah

It sounds like UCLH has a lot more options when it comes to keeping an eye on you than our hospital here in Swindon. Here you are basically in or out, and if it works well you get into the specialist haematology/oncology unit. M is now home after a very sudden discharge yesterday evening. No hint of it on Thursday so I went to a…[Read more]

You are always so reassuring. I just hate seeing M going through so much. It wouldn’t be so bad if there seemed to be any positive results from all of this. We just have to hang on to the knowledge that the myeloma hasn’t progressed and would have done without treatment. He will get to SCT and maybe it won’t seem quite so bad when…[Read more]

Lovely to hear about your rainbow too Mavis.

I’ve been to PALS today and got the parking issue off my chest.  Never thought about taking a cab, Megan, but that’s a really good idea.

M has C.Diff. He’s now in isolation and will be in for at least 10 days. This will certainly have an impact on the chemo and SCT plan, but…[Read more]

Andy and Ceri’s experiences seem to sum  a lot about myeloma treatment, in that something that doesn’t work for one person can be so successful in another. It’s really helpful to hear about what you’ve experienced.

My husband seems to be doing ok at the moment. He’s coming up to the end of the second full day of…[Read more]

It’s there if you click the Information tab, look to the right-hand column and then click Myeloma UK publications list. You’ll find it near the bottom of the list and you can download it.

Hope you find it.

Sarah

The bottle of red is being enjoyed – I get it all to myself as M doesn’t drink (and it wouldn’t make a good combination with the morphine!).

Rebecca – I’ve been reading and in America they sometimes add Velcade to DT-PACE – maybe M is being let off lightly?!

It’s a bonus to have sunshine this weekend. We…[Read more]

It’s so good to hear of Ian’s progress. It must be such a relief to see him getting more mobile and doing so well.

I do try to take one day at a time. Work makes that difficult, but I do my best! We’ll enjoy the next few quiet days and I hope you do too.

Sarah x

He’s home again tonight having had BMB and picc line fitted. There’s a problem getting the chemo drugs – something to do with one of them beimg unstable and only lasting 24 hours and the bank holiday weekend being imminent. So now it will probably be Tues or Weds next week before M actually starts the chemo.…[Read more]

We’re hoping that this aggressive treatment will send things in the right direction. It’s reassuring that M now knows most of the staff on the ward and he even has the same room as he had for two weeks in January. He’s booked in for BMB tomorrow morning with the nice registrar who talks about football with him. I’ve…[Read more]

M’s consultant said that a good initial drop was a good sign. Let’s hope it keeps going in the right direction.

Sarah

We’ll probably be a bit less anxious once we know when this is all starting.  It should be next week but the consultant needed to organise BMB, picc line fitting and a bed before he could confirm admission date.

The positives are that it should be a fairly intense but short period of treatment and a fairly rapid progression to…[Read more]

My husband had a plasmacytoma last year on his C6/C7 vertebrae. It caused the vertebrae to collapse and compressed his spinal cord. Surgery was the first step (twice – front and back), to stabilise the spine. The surgeon said he “scooped out lots of gunk” but at the time we didn’t know what it was. He was even referred to a tropical…[Read more]

I’m so sorry to hear how unwell your gran is. It must be a very worrying and stressful time for you. Do you have a contact number for the nurses who are coming out to your gran? It might be worth trying to talk to one of them to see what they think about you travelling home in 8 days. They won’t be able to give you any exact information…[Read more]

Do try to find someone to talk to if that would help you.

Sarah

I hope you both can catch up on some rest now. You must be exhausted as well as Michael, Jean.

Sarah

I know the side-effects of some drugs build up over time, but is this the case with…[Read more]

We’re going in tomorrow morning for the first lot of dex to go with the start of the 5th cycle of Velcade and Cyclophosphamide. I will be constantly checking for side-effects I’m sure, although I have to go to a conference all day Saturday, which will cause me to worry in other ways. We will both try to keep calm about it as anxiety…[Read more]

It is so encouraging to hear of Ian’s progress. I’m really pleased to hear he is coping with the chemo. M has been having physio. He was referred after his second spinal op in order to strengthen his neck muscles enough to stop him needing to wear the neck brace. His neck is doing really well and he gave up wearing the brace just…[Read more]

Your responses helped me to have a preparatory discussion with my husband before his appointment today, which , I think, helped him to make his decisions today. Unfortunately the PP has not shifted after 3 cycles. The light chains are down a bit but not as much as the consultant expected/hoped. We had a…[Read more]

The dex waa given last year before M was diagnosed. He had spinal cord compression and it was the first thing the spinal surgeons started him on before his first major surgery. The plasmacytoma that had caused the compression and destruction of a vertebra in his neck wasn’t diagnosed till he was in hospital with the…[Read more]