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Carolsymons 10 years, 8 months ago.
Well done Richard! I came home last night- the doctors had a bit of a struggle ripping out the Hickman line and had to cut out the cuff in the end, so I have a stitch and am a bit sore. Now day 15 with very few restrictions on food…fruit and salad OK..no undercooked food, blue cheese, cold shellfish or takeaways. I have cooked and managed to eat a mushroom omelette for breakfast and salmon, roast veggies and kale for lunch/dinner and so far all has stayed down-bonus! And it even tastes good! When I was on CTD nothing pleased me but the melphalan has not damaged my taste buds like I expected. Mind you I really need to lose some weight and plan to get out walking, starting Monday. Difficult here as the weather is sooooo dreary. Oh I wish I was back on the beach in Australia! Planning to have recovered, be in remission, taken ill health retirement, sold up flat and car in London and be winging my way back to Australia by the end of July…..well that’s the plan anyway. You know the saying…” The best laid plans of mice and men…..” or something similar……
Carol
Hi Richard and Carol
Glad to see you are both doing so well. It will be great when you can go back to your normal foods again.
Graham had his stem cells returned as planned on Thursday but he was allowed home again but we had to go back this morning for a blood testand there was a room there ready for him. The blood test was fine so case put back in the car and back home again. He now has to go back on Monday morning at 10.00 and I see that Scott is going onto the same ward that day.
Graham has no signs of nausea yet and eating normally – rump steak last night and I am making a chicken curry tonight so in a way he has missed a week of his hospital stay which is great. We have started eating his stash of sweets and crisps etc that he has got for his time in hospital as by the time he goes in he probably won’t feel like eating anything.
Angela
Hi Angela
Good to hear -so far so good….but be prepared the worst is yet to come!
Carol
Had a bit of a set back this weekend – nothing major so far. Our daughter has had a cold /cough for the last week and up until Friday I managed. Then a cough started , still there Saturday but no raised temperature. Yesterday my voice became hoarse so my wife was concerned so she phoned the hospital. So far they believe it’s viral, I need to monitor today and if it gets worse or I get a raised temperature then the hospital believe it could turn bacterial in which case it’s straight back for antibiotics. They also say I must drink more then the required minimum for MM patients as this will help flush any virus out. So here’s watching and waiting. Wednesday I’m back in for a weekly check anyway so I’ll be happy if I manage until then. As I said before, if it wasn’t for my wife, I probably wouldn’t be here, Don’t underestimate the poweres of perception of the carer.
Hi Dick and Carol
Hope you were ok following your last post. I have good news today. I have picked up Graham this afternoon and he is back home. It is 16 days after his stem cells put back. The first week was ok but he had a very weak flu and I think this made things worse than they would have been. Last Sunday he was admitted to intensive care for 10 hours due to a temperature of 40, low blood pressure and a pulse which was changing from 95 to 180. He was then on a cocktail of antibiotics for a few days and oxygen for about 4 days. He had an isolation room for the whole of his stay due to him having flu and all of the staff were wonderful. He has the diarrhoea but only had sickness for one day and he has had a good appetite throughout his stay although not eating as much as he would at home. Also he didn’t get the sore mouth. His taste buds have not changed at all which is good. He goes back for an out-patient appointment on Wednesday.
He is so pleased to be home and so am I as the last 2 weeks have been really hard with working/visiting plus the scare of him going into intensive care at 6.00 am on a Sunday morning. Hope you are both doing well.
Angela
Hi Ang,
Really good news then. The high temp I think everyone gets but certainly combined with Flu would have been scary for anyone. Let’s hope everything continues to improve. I’m afraid I’ve had a few days of Diarrhea and sickness which the MM nurses put down to either an infection or the stomach being damaged by the Mephalan. The medics don’t seem to concerned at the moment but quality of life at the moment is really impaired. I think we must all keep our guard up. I think with Graham it’s just a case of taking one day at a time and keeping an eye on hygiene, infections etc. Be wary of children because we just don’t know what they carry – mmm I could get the part of the Child Catcher in Chitty Chitty Bang Bang with that attitude!
Hi Angela
Great news about Graham being home. I am up to 32 days post SCT and am definitely having more good days now than bad. Still have some nausea, but no vomiting, no diarrhoea (but frequent toilet visits) but I did read that the melphalan takes at least 6 to 7 weeks before side effects lessen (5 weeks tomorrow for the melphalan). For a while there it was either “chew and spew”(Australian for vomit) or “chew and p**” or both at the same time…..disgusting! No infections at all but I am staying home apart from hospital visits weekly (now fortnightly) I am still really tired, usually having a lie down and often a nap morning and afternoon. Is Graham on the prophylactic antibiotics and anti virals…I hate having to take them but know I must. I keep telling myself to start a walking program, but can’t seem to self motivate! Plus the weather most days is soooooo dreary here in London.
Carol
Hi Richard and Carol
it was a month last Thursday since the stem cells went back and according to doctor yesterday at check-up everything going ok but Graham was very nauseous yesterday and I tried to cancel appointment but they said it best to go so we did. He is still very tired and breathless. He is on anti-virals but there is one he can now stop taking and earlier in the week stopped taking the fizzy salty drink that he had to make up and which he dreaded. This link was started by Richard in November and it is now March! Where did February go??
Graham got a call from HR at the College he works at on Monday (9 days after coming home from hospital!). 40 jobs are going and his is one of them so he can apply for redundancy or go through the selection for a new job and all has to be in place by end of April so this is an added stress and one which he shouldn’t even have to think about.
Best wishes, Angela x
Hi Angela
It sure does take some time to recover from the dreaded melphalan. I still feel nauseous occasionally, soooooo tired and have to force myself to go out for a walk. After only a short distance I feel weak and shaky but must persist. I am on 2 prophylactic antibiotics (which I hate taking) but the consultant stopped the antivirals a week ago. I have never had chicken pox, so shingles aren’t a threat anyway. I have been so lucky with my job having managed to convince the Governors at school to keep me on full sick pay now for 11 months. I am hoping to return on a phased return after Easter, which allows me to access a new year of sick pay available after 1 April.
I think Graham and you should start checking the disability laws, as surely they cannot make you redundant if you are on sick pay with a disability. I received useful information from my union, which is why I wrote to the Governors. I cannot imagine having to face such an important job interview feeling as I do now. I read about other people discussing the “new normal” after chemotherapy etc., but I just want the old me. I feel so spaced out all the time. And my vision is definitely affected too, so not sure how much time I will be able to work on the computer at school when I do return.
Carol
Hi Ang,
I believe it was at the 4 week stage that I started to feel nauseaus and had 6 days of diarrhea and vomiting. I was also very tired. Things are definately improving, I have a bit more energy and feel able to do a lot more. Climbing stairs tires me out. We are moving house this month and I find if I pace myself, I can still pack boxes, move things over to the new place and general tidy and clean. I do need a rest sometime during most days though. So on that basis maybe Graham’s just going through part of the natural recovery stage. Bad news about Graham’s job, as Carol says Graham needs to check the regulations, is he in a Union? Anyway, it looks like Carol’s the leading light having done really well with the blood results, perhaps it’s a bit of inbuilt Aussie strength, something a lot of us need now I think.
It is lovely to have the good blood test results, but I just wish I had more energy! I have my unit for sale too now, so have to keep everything pristine for viewings….stressful! Also, my husband is going overseas on Monday for a month, so I will be home alone. I know I will be fine, it is just that I have been relying on him for driving and grocery shopping. Still I am on monthly appointments now, although the consultant told me I have to resume my monthly parmidronate, so that’s another hospital visit each month. Has anyone else been put back on bisphosphonates? I was hoping to dodge that for a bit longer.
Carol
Hi Carol
Frank had SCT March 2013. After 100 days all was good and they started him on Zometa. Had it for a couple of months and then his phosphate level dropped and Zommeta was stopped. Have him on meds to improve phosphates but they are not working yet so they are still with holding the Zometa till they start to rise
Hope all goes well for you
Jean
Thanks Jean
I am only 45 days post transplant….hope it is the right thing to be back to the bisphosphonate??? Anybody else know about this?
Carol
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