Dear Eve, Vicki, and all
Thank you for all your good wishes, it's so good to be able to fall back on such a wealth of shared wisdom and experience, it's like having a huge family gathering round for support. I dont have much family, and, apart from our two children, all that I have are too tied up with their own problems to be very supportive, so your support really means a great deal.
Yes our holiday is all booked and we fly off on Saturday morning, it's something we all need badly, it has been a pretty awful year, what with one thing and another, so really looking forward to some time in the sun.
Eve, I agree, I have been wondering about Gill and Stephen, she has posted a bit but not since the end of June, like you, I hope things are OK for them
Much love to all,
Mari xx
Morning Ali,
Just waved him off, he said he was feeling fine but I hated him going off alone. I guess it might be easier second time around. He says it's not painful, or even very uncomfortable, just very very boring. I think he will probably sleep as much as he can. Last time the staff were very good at providing tea coffee biscuits sandwiches and even fruit and crips so he has not carried food with him. He has his phone, book and laptop for entertainment. I just put the 'magic' anaesthetic cream onto one wrist where he will have the first cannula placed. Once that is in they will take blood and there will be an hour or so hanging around while they wait for results. They will put more cream on the opposite elbow while he is waiting and then hopefully it's in with the second cannula and on to the machine for the rest of the day.
I hope you all have a good day and an excellent harvest,
Much love Mari xxx
Hi Ali,
Yes this is Steve's second transplant. Some people have been told that if they manage to harvest a large number of cells then they can be stored to be used at a later date. They dont seem to do this at Kings, they do so many transplants that they dont have enough room for storage. Steve harvested about 5 million last time and they were all put back in one go. We were slightly concerned at the time in case he would not have a chance at another later transplant. However when his consultant suggested a second transplant, he did not seem to be at all concerned over any difficulties with a second harvest. Steve has been receiving double GCSF injections and he is booked in for three days for harvest, just in case there are any problems. Steve has been having some rib pain and he has done a fair bit of sleeping this weekend, so we are hopefully that his stem cells are doing their thing. He is already in bed, he has to be in hospital in London at 8.30 and is catching the train at 6.30 tomorrow morning. Both my daughter and I have offered to go with him but he is being very brave and insisting he will be fine, I hope he will but on the quiet I have arranged to take a day off work on Wednesday to drive him up if he still needs to go in. I hope it all goes well for your mum, have a good day and here's to millions of lovely little stem cells,
Love to you both, Mari xx
Hello Stephen,
Good to hear from you, I have been thinking about you and wondering how you have been getting on. I am delighted to hear things have not been 'too bad' and now from Day 12 things should be on the up.
Take care and take your time, your bloods will come up in their own good time, I know it can be a frustrating wait sometimes,
All the best,
Mari
I love it, that's just perfect
Mari x
Hi Jen,
Glad to hear things are going well for your dad but sorry to hear your lads are poorly, it's such a shame when they are little.
Chemo is horrible but the best bit about it is that, hopefully it will be effective and your dad will feel a great deal better when it is done and enjoy some time in remission when he is likely to be able to live a pretty 'normal' life.
Keep smiling and I know you are giving your dad great support,
Love Mari xx
Good morning Dai,
I am so pleased to hear that you are feeling so much better. It is such a vexed issue to make the decision to go into hospital with a raised temp. Steve has been rushed in before now with a high temp and chest infection, only to be sent home with a good blood count and feeling slightly silly. I dont believe it is ever a good idea to take risks because neutropenic sepsis is such a dangerous thing but I absolutely hear what you are saying about not giving your doctors any ammunition to end your treatment.
I strongly believe that we do know our own bodies, especially you guys who have been through so much treatment and have grown so used to listening to them.
I hope now you continue to improve and start feeling back to normal soon,
Much love Mari xx
Hi Beverley,
Like you my husband was diagnosed with smouldering myeloma after a routine blood test for something else. This was in 2004, he had 6 monthly blood tests and carried on as normal. i think we too put our heads in the sand and carried on as normal, it worked for us. I hope you will smoulder for many years to come but do be vigilant. Steve's myeloma became active in the Autumn of 2009, first with the odd twinge of rib pain and then with increasingly sever back pain. Obviously he went to consultant who said his paraproteins were still fairly low, about 17 to 24 and that his pain was caused by something else. We convinced ourselves that he had a slipped disc and were waiting for an MRI when suddenly overnight he had tingling and lost the use of his legs. He had a plasmacytoma growing on his vertebra which has compressed the spine. This ended up in an emergency operation and after that he started his myeloma treatment. His consultant was EXTREMELY apologetic that he had not caught it sooner!
I dont want to worry and scare you with this story, far from it, but if you have pain and think something is happening, insist on an MRI to check. Hopefully it will be nothing but maybe it will save you a great deal of trouble and heartache. Steve took a year to recover from this, a year which included his treatment and a stem cell transplant but he has had great remission when he lived a normal life and he has been working full time, he was 53 when the myeloma went active.
In the meantime, keep this in the back of your mind, go for your checks, be positive and live a wonderful life. Sometimes smouldering myeloma never develops into the full blown version, sometimes only after many years, I am sure you will be one of the lucky ones,
Much love Mari xx
Hi Tom.
You dockers muct be a viral bunch, only 3 hours to get all the Stem Cells you needed, that must be some kind of record,
Glad you are still doing so well,
Much love Mari xx
Morning Etta,
Pleased to hear you are home and resting up. Well done on the harvest, nearly 5 million is a good job, and before long they will be coming back to you to build you back up after the melphalan has done it's job and knocked out those nasty little myeloma cells. When are you going in for your transplant?
My husband Stephen is just behind you, he is having his harvest next Monday, Tuesday and hoefully not, Wednesday. This is his second SCT and he is going in on 19th August for that, same as Colin and Ali's Mum, ( what is her name Ali?)
Take care today Etta, with this weather it's just as well to snuggle down on the sofa! good luck for the rest of the procedure,
Much Love Mari xx
Dear Vicki and Colin,
Glad to hear it is all underway and you have got all your dates, it all starts to feel so real now and by September it will be all over and hopefully Colin will be on his way back up again towards a good long remission. I promise it is all worthwhile, I know that it's very scary and Colin is going to feel pretty awful for a while, but we had a wonderful year of normality with Steve's remission, even if it was only 14 months, it was still worth it. I hope Colin will get much longer and you are able to enjoy your time together.
Stephen will be getting his melphalan on the same day, 20th August but Kings now do not have a rest day before giving the stem cells back, so he gets those on the Tuesday.
I managed to give Steve the GCSF injections the first time around, it was a bit scary at first but I knew he really did not want to do it himself. I tried to be as quick and efficient as I could so it would not hurt so much. Maybe I was too quick because he did not get a great harvest on his first day. The nurses in the hospital gave him a double dose when he was there and he got loads on the second day. Luckily my daughter is home this time, she is training to be a nurse and she is going to give him all his injections, the first were last night. He has gone to work today although he did complain about feeling a bit 'sluggish' this morning. He has not got a date for his Hickman yet and I am quite pleased as we have a holiday booked from 21st July to 4th August, just after his harvest. I am hoping he will not feel too exhausted. The docs are happy for him to travel and he has some emergency antibiotics to take with him. We are off to south west France, not far from Carcassonne and I cant help feeling that a bit of sun will do him, and me the world of good.
On the ice lollie front, Steve had a couple of orange 'Calipos' when he had his first SCT, a good shape for sucking, and he had very few problems with a sore mouth. He was lucky, the ward sister popped down to the hospital shop to buy them for him!
There are so many of us going through this treatment at the same time, I will be thinking of you all as I travel in and out of the hospital each day, lets hope it goes smoothly for everyone,
Love Mari x
HI Eve,
Things must vary from ward to ward, on Davidson the ward sister went down to the shop to buy Steve some ice lollies when he had his melphalan and I took all kinds of food in for him when he was feeling rotten as long as I stayed within the list of suitable foods for someone neutropaenic, crackers and cheese was a favourite, non biological yoghurts, quite hard to come by as most yoghurts are live these days and lovely little jellies with fruit in the from M&S, he liked those but was never very enthusiastic about anything. I was amazed at how well he ate on his first evening home. He demanded pie and chips, something he would never normally eat, and finished the lot!
It's true what they say, myeloma is different for everyone, and the treatment can also be very different for everyone,
Love to everyone and I hope you are all doing well. They have just cancelled our Sports Day because of the bad weather, so everyone is a bit down in the mouth in the school where I work, fingers crossed for some sunshine soon,
Mari xx
Morning Etta,
Hope you are feeling well today and rested, did you have to stay in overnight? Good luck for the rest of the harvest procedure today, lets hope you get lots and lots of lovely stem cells,
Much love Mari x
hi Ali,
The harvesting process can sometimes reduce calcium levels, and low calcium can make you feel pretty poorly. They keep a close eye on bloods during the treatment and can easily prescribe something to sort out Calcium levels if needed, I guess the milk might help.
It's only two years but I really cannot remember a drug that you cannot take with milk but I am sure your specialist nurse will explain it. I hope you mum is feeling well and not minding the GCSF injections too much, actually I guess today will be her first ones. My daughter is a student nurse, so she has volunteered to give Stephen his injections. She says it will be good practice but I am not sure how Steve feels about that! He has to have a double dose as this is his second time around.
Andy, I know what you mean about the Hickman being a boon when you are having a lot of infusions etc. Steve has not been having many of late as most of his velcade was sub cut and he did not mind the cannula when he had his cyclophosphamide. He knows he will need one for the SCT and will be glad of it, he just hates having it there. He takes most other things in his stride, even bone marrow biopsies but really loathed that Hickman!
I noticed that many of you going through harvest just now were kept in overnight for the cyclophosphamide, Steve just spent the day in KCL being washed and rinsed and was out about 4.00 pm and on the train home, alone, having insisted that he would not need support, despite offers from me and Carys, our daughter, to be there with him. I just put it down to,'No sense, no feeling'
I hope everything continues to go to plan for everyone and Andy, I hope you see some downward turn soon,
Much love, Mari xx (better stop skiving and get back to work before someone notices!)
Dear Dai,
So sorry to hear that not only you bit Janet as well, have been feeling so under the weather. It does not sound like fun in the Crowther household. I am particularly sorry to hear of your fatigue and low energy levels. I know how awful that is, it is one of the things that gets Steve down the most, that terrible ennervating exhaustion. You know you must listen to your body and rest even though I know you will want to be up and doing. Hopefully a few days rest and the antibiotics will kick in and give you some relief soon.
I do hope that you are feeling much better very soon and that you can steer clear of any other nasties for a good long while,
Love to you both, Mari xx
