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 the lovely garden, exchanging stories with laughter and some tears. It was better than I could have hoped and more moving than I could have imagined.
None of us knows the impact we have on others, but this all makes me feel that we must do our best to spend time with friends, relatives and those we love, and to live each day to the full.
We offered people the opportunity to make donations in lieu of flowers and half of the money will go to Myeloma UK.
Thanks for all your good wishes.
Fight the good fight!
Sarah x
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 service in detail – without my knowledge – sometime last year. I found it a few weeks ago when I was looking for something completely different. I quietly put it back but then I knew where to look for it when I needed it. One of the hymns we shall be singing is “Fight the good fight with all thy might”. As a keen athlete, I’m sure he chose it for the second verse, which begins “Run the straight race …”, but I will be thinking of all of you as we sing that first verse, and wishing you courage in your own fights with myeloma.
Sarah
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 had been made up to make this possible) and whisked him off to theatre.
Rebecca mentioned the pain, so it’s worth knowing about and being prepared.
We’re not having the best of times at the moment as he fainted and had a fall last night. I had to call out the paramedics as I was afraid to move him with the spinal damage – in case he had caused more. He’s ok-ish now but my stress levels have risen considerably.
Thanks again for your info. It helps a lot.
Hoping that your transplant goes very well indeed and gives you a long and deep remission.
Sarah
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 has most of his treatment, a volunteer offers a cup of tea and sandwiches. Where are you having your transplant?
My husband spent 10 days in the Trauma Unit there last year for his first spinal op, had a week in the Nuffield Orthopaedic and 5 weeks of radiotherapy in the Churchill, so we got to know the Oxford hospitals quite well. He didn’t have the lower spinal damage at the time, though, so travelling wasn’t so bad.
He’s just had a 3rd cycle of DT-PACE – the C is cyclophosphamide, so it’s impossible to know which of the drugs is responsible for his general grottiness at the moment.
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 had more bone damage. He starts the GCSF tomorrow and the harvest is a week on Monday. I’ve just brought him home from the hospital with 4 bags full of drugs and build-up drinks.
Thanks for sharing your experience. It is always good to have the reality alongside the theory. I’m really pleased you’re both doing so well.
Sarah
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 understand myeloma. I’ve found the best explanation in the children’s book that you can order from the publications list, but I do think the best thing is to have someone you can ring up or drop in to see, who will take the trouble to get to know you and who will be around when you have your treatment.
My husband accidentally wasn’t allocated a key worker till a few months down the line, but she has been fantastic and keeps complaining that we never bother her! She went to see him yesterday, as he’s on the ward at the moment, and went through all the details about the stem cell harvest, which is hopefully coming up in about 2 weeks’ time.
I know others have mentioned the helpline, and I’ve received good advice from phoning in, but it is really good to have someone you can talk to face to face.
Best wishes,
Sarah
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 started. I felt that nothing was going to work, so didn’t really know how to handle the more positive news we got last week.
It sounds like a very good idea to get a second opinion. Consultants should not be stroppy – they’re meant to be on our side!
Will be thinking of you both next Thursday and hoping for better news.
Sarah x
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 far harder than the 5 cycles of VCP/D. I don’t know if I’m right, but I think it helps if you give yourself some credit and say “I’ve already got through x,y and z, so I can get through this”.
Of course I’m only dealing with it second-hand, which is much easier.
In any case, I wanted to wish you well and hope that it isn’t too bad, and the time goes quickly. I’ll be thinking of you this week.
Sarah
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 cycle. The lab results also show no abnormal plasma cells. His light chains are down in the 20s and PPs down to 11 – although they have never been over the mid-20s.
It’s so hard to take in positive news because, from the time his solitary plasmacytoma was diagnosed, it’s all been downhill, with the myeloma diagnosis in January.
Everything is prefaced with a big IF at the moment, but the plan is to admit him over the weekend to start chemo on Monday, interrupt chemo to fit a Hickman line (he currently has a picc) when they can get him to theatres, and hopefully get him to the scheduled stem cell harvest 21/22 July.
DT-PACE is hard on your body and he has felt quite rough at times. He lost his hair but that’s a minor thing compared with losing about 5 inches in height, owing to vertebral collapse in his neck and lumbar spine, and about 5 stones in weight (some of which needed to be lost!). Neutropenic sepsis, with c.diff and e.coli wasn’t fun and we can do without a repeat of that. However, now it seems as though something is happening and it’s a case of onwards and upwards!
He also says there are worse times to be stuck in hospital than when the World Cup and the Tour de France are on tv!
I’m having a celebratory glass of wine this evening – last chance before I’m on-call to take M to the hospital when the call comes to say a bed is waiting.
Hoping for positive progress for others of you too.
Sarah
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 waste of time today?
Hope you can relax a bit this evening.
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 the last 5-10 years. Others have recommended the American site Myeloma Beacon, and there is a lot of detailed information there too.
Like your FIL, my husband has stage 1 myeloma. At the age of 45 we have every hope that he has a good number of years in him yet. As Carol says, there’s little point in thinking in terms of life expectancy as people’s general health at the time of diagnosis must have some kind of impact and there are so many variables. It is important to be realistic, but that certainly doesn’t rule out optimism and, if you read some of the stories here, people still enjoy life, even with myeloma.
Sarah
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 feel uneasy and I’m sure they’ll do their best to help you relax. Some invite you to take in a CD you’d like to listen to, but my husband says you wouldn’t hear it as the machine is quite noisy.
We had a few problems with joining up the care last year, when he was under 3 different hospitals. Once he was fully diagnosed, though, the Multi-Disciplinary Team discussed his case and we also were allocated a key worker – the clincial nurse specialist – so we have an initial point of contact for any questions or concerns.
I hope Friday goes well. Try not to think about it too much if you can.
Sarah x
