This topic contains 13 replies, has 4 voices, and was last updated by 
eve 10 years, 9 months ago.
I haven’t posted for a while, what a roller coaster Mike has been on. He started Revlimid in November. January he was in hospital with an infection, February he was ill over half term week and started antibiotics for sever cold sores. His PP levels dropped from 38 to 25 at best. They where going to try him on another 2 cycles and see what happened. Then on the 13th March Michael collapsed with a temperature of 38.5 and had no strength at all. after a 999 call he ended up in resuscitation on a variety of machines. He got transferred to the heamotology ward and they where trying to get his temperature under control, it went up to 40.2 at it worse and never really got anything less than 37.5. they where filling him with antibiotics and doing loads of tests but everything came back negative. then on the 19th I was told things had got really bad. he was struggling to breath. That night I had a call at 3am and told that he needed to go to critical care. I went to the hospital straight away and I was to expect the worse. Mike was asked about putting a breathing tube in and if his heart stopped whether to resuscitate or not, we decided not to he was so unwell. They put him on a cpap machine to help with his breathing and gave him loads of different antibiotic’s. He was getting tested for swine flu and we all had to be masked and gowned to protect ourselves. It was a horrible time. My Michael is a fighter and I am please to say nearly a week later he is doing well, the antibiotic’s eventually started to clear up the infection on his chest and he is breathing with just an oxygen mask most of the time. Once he can go 24hours without the cpap machine he will then be transferred back to the ward.
Michael had not been unwell before he went to bed on the Wednesday it just came on really fast, he had been at our daughters graduation day on Monday and looks great in the photos.
They have decided to stop chemo treatment for now until Mike builds his strength up, he is really week which is not helped because of the stroke he had 12 years ago. But I am really glad that he is on the mend, its not our time to be apart.
Jean
Hi Jean
What a fighter your Michael must be! Do hope he is out of critical care and making progress. Infections are a constant source of worry for all of us.
Carol
Jean
What a relief that Michael is on the mend. Infections can be really bad as the immune system is lower with myeloma.
My husband Ian started on velcade today so thermometer will be out every day.
Take care of yourself too.
Love Maureen x
Hi Jean
I know it’s a worrying time for you!!! But if Michael has the will to fight it he will,it’s when they put him out and on a Ventilator,the chances diminish,it will take a lot of time to get over this,and they will make decision of his Chemo treatment secondary. But he will get there.
Slim had his Stint in ITU for nine days then the ward for 11 days,three years ago,so hang in there,he will recover but slowly.the big thing will be any clots,see if they are going to do a CAT scan.
He will remember very little of this time,so that in it,s self is a good thing,you must try to get some rest yourself,while he is in hospital,as it is going to be hard work for awhile when he comes out, are you still working??????. Take any aids they give you to help his recovery. Hope this gives you some peace of mind. Eve
Eve, I am still working but my GP signed me off for two weeks if that is not enough I will have some more time out. I have felt so worn out and exhausted with all the emotional strain. I am due to be made redundant later this year and will be taking retirement. If necessary I will see if we can bring it forward.
Mike went all day without the machine and he did his biggest walk ever. The nursing care he is have is second to non. One to one care all of the time. Think he had a little crush on his nurse yesterday, so he must be feeling better.
Jean
Hi Jean
That’s all good news,Slim came out in a wheelchair ,I bought a light weight one in the end,which is easier to fold,took months to get him completely on his feet,but he did it, it was the best buy I made as it has been used on and off for the last couple of years.
If you can afford to retire I would go for it,you might miss work but you do adjust !!! Not the thing I visualised my self doing,but no regrets,I think I will look back in the future and it will be glad for these years,when you come close to loosing them,it put everything into perspective .
As David says never never give up.Eve
Hi Jean
I retired when Ian came out of hospital in October. I was working part time but found the first 2 weeks at home very hard. We weren’t used to being together all day. I now don’t know how I ever fitted work in and we go out most days even if it’s for a coffee.
Regime if you can afford it.
Maureen x
Sorry Jean it should have been retire . Predictatex bath
Michael moved up to the ward late Friday. He is still on the oxgyen and he looks so much better. They have said it will be a long process and wheelchairs have been mentioned. We also have to make the decision that if he goes down hill not to do any intervention. I’m finding that very hard to deal with. Seeing the doctors this afternoon see what they have to say.Eve does slim have treatment
Hi Jean
Progress is being made thank goodness. Both of you keep fighting, you will get through this.
Carol
Hi Jean
After the blip as I call it,it took a very long time to recover,eventually Slim was walking again,he started treatment about two weeks after he came out of hospital,I thought it was to soon,but he coped well,but treatment failed,went on to CDV and then SCT.
Nothing has stopped the Myeloma,no real remission,he started CDR,but had a Artery blockage from hip to knee,and after 2 admissions with Sepsis,and taken off medication,wait and see!!!!,he had 2 biopsies end of last year,new the results were going to be bad,but expected him to be offered more treatment!!!
We were told in January. No more treatment as his cells were not growing,the said they would support him with platelets and blood,the consultant offered us a second opinion,which we took up,my thoughts were how can you decide on a persons life with a BMB ,the consultant made it very clear a team had sat down and decided,no treatment,and he thought a second opinion would not be able to come up with anything!!!!!!
After a couple of miserable weeks,we saw Faith Davies at the Royal Marsden,plus a lady called Peggy had told me she was being treated with platelets before treatment.
Slim is now being treated at the Royal Marsden,he starts his third cycle of Velcade this week,
We made a choice either (go home and wait to die ) or go on treatment with the full knowledge,we could be time,but a good possibility his immune system would break down.
We have no regrets with are choice,Slims attitude was I am not ready to Die,in three years I have come close to loosing Slim a few times,but he is a fighter,he made me promise I would not let them put DNR on his notes!!!!
We are now in a position that he has treatment 100 miles away,he is doing well and has a fair quality of life,over all he has improved,we still do not know if the Velcade is working second time round as Slim is Non Secretor.He held is own with a chest infection,also last Thursday took him to A&E and ended up in hospital over night intravenous antibiotics,no beds so got him home the next day with antibiotics,doing well.
Faith Davies has given us hope and at this stage it’s all we can ask for,I cannot tell you what to do Jean????? But we have talked about it and decided.He is not a man to just give up and die,so I will fight for him,I should also mention he is one of the most stubborn people I know,so his attitude is good.
I hope our story helps you and Michael to make decisions ,with a disease like Myeloma I believe even consultants are on a learning curve,I also believe a person does not die until they are ready,I hope you find the strength to make decisions for you both. Love Eve
Hi Jean
Hope Michael is continuing to improve and keep fighting for him. Ian was in a wheelchair but is progressing and walking with sticks.
Maureen
Michael is making progress they are reducing the oxgyen every day. It is great to see light at the end of a tunnel and u can see a future. I told him he can’t give up I’m planning my retirement and I want to get old with him. Thank you for all the responses is good to be the stories
Hi Jean
Good for you,keep in that frame of mind,never give up,it will take you both a long way,.Eve
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