Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Hi my name is Anthony C my wife is 4 days post transplant went through the conditioning chemo quite well but had bags of saline fluid which she had to have Furosemide to get rid of the fluid swollen feet etc, her original diagnosis was Myeoldysplasia MDS for short, last November. Her blood and platelet transfusions were getting more and more regular neutrafils rock bottom, after the last bone marrow biopsy the consultant said that a transplant was her only option. She had a cycle of azacitadine which was her 7th this put her into remission as her blasts were only 3%. We been told that the transplant journey is very tough will be a roller coaster ride with plenty of set backs and up an downs mentally as well as physically. in 2 to 3 weeks the neutrafils should start rising and should see a change in her blood type. The donor a 25 year old male was an excellent match with strong cells he was able to donate 10 million cells they have kept some cells back for a top up if needed. She is now having Cyclophosphamide and tomorrow starts on Tacrolimus which I am told is an anti rejection drug. I would like to thank the Heartlands Hospital, the haematology nurses are just fantastic the hospital has just won the centre of excellence award for the 2nd year running. My wife is 71 years old which makes the transplant even more risky but when it's only chance you have to go for it
Hi Anthony C and good to see you have found your way over to our little corner of the Macmillan Community.
Jane our SCT Nurse is on holiday so I had your post to her moved to our 'Ask a Nurse' so that you would not be left without a reply.
So many folks with blood cancers go on the SCT rollercoaster and on the whole with great results. I was the same as your wife as an Allo SCT was my last roll of the dice......... I am now 4 years post my second Allo SCT and doing very well.
The time you are in is a waiting game and you just need to sit tight and let the new cells do their job.
It was day +20 before I got out of the unit following my second Allo and even then my counts were still at 0.9 but "you are safer in your own home then in the unit" I was told - this was due to a few bugs finding their way into the unit. So I was sent home with a months supply of G CSF Injections to help my count come back up having 2 clinics a week for bloods etc for the first 6 weeks......the problem with this was we are in Inverness - my SCT Unit was in Glasgow so a lot of trips up and down the A9.
You may find this thread Life after a SCT - A Survivor's Guide worth a look at. We have over the years collected various thoughts about the post SCT part - yes it goes in various rabbit trails but does highlight some of the milestones post SCT.
We are around to talk with, ask questions and general to be here to help.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Hi Mike nice to talk to you again , I have to say you are one tough cookie, what you have been through and come out the other end is truly amazing you are a beacon of light for positive minds. My wife has a positive half full attitude unfortunately I am the opposite half empty person sort of yin and yang. SCT is going well so far I don't know if that is a good or bad thing but this is day 14 of the SCT neutrofils still low although on GCS-F platelets and blood still being transfused, millions of tablets, at least the amount of fluids given has dropped considerably. The consultant is happy with her progress but it will be a long roller coaster ride. The one thing that has stuck in my mind is that people you thought were friends stop ringing you, stop visiting just when you need them most are they afraid to ask questions? perhaps that is when you know who your true friends are. Why do they insist on serving rubbish foods in hospital when it it vital to have nourishing food to aid recovery, the food my wife was served yesterday I would not feed to a dog. Anyway enough moaning must be positive. One bonus is the hospital is only 4 miles away, parking though is another story, I get a ticket for £10 that lasts 20 days which is reasonable, I would dread your trek to hospital especially in the winter. Keep on inspiring people may the force be with you
Hi again Anthony C,
Good to hear SCT is going well so far and low Neutrofils at day +14 is rather normal and as I said when I was sent home my Neuts were only at 0.9 ........... millions of tablets......lol - I do remember those days well.
Our mantra was "If our consultant was happy with progress - we were delighted".......... but holding on tight in the rollercoaster can be hard work but best not overthink stuff, especially the stuff you can not control.
Yes, some people do stop visiting and yes, just when you need them most. "Are they afraid to ask questions?"........I think that this is a safety blanket as they are lost for words.......... but its not about words its all about actions....... and yes, true friends to rise to the task of supporting.
As you will have seen we were in Glasgow for my two SCTs so a total of 11 weeks away from home - 8-9 hours round trip but our true friends would look after the course, cut the grass, do the round trip to see me for 30mins but most importantly - take my wife away from the confines of the hospital.
Hospital food - enough said but I have to say that the food at The Beatson in Glasgow was ok - not amazing but ok.
If you have a few friends who are good at making good home made soups - get them on the case to fill the freezer as this is one of the best ways to build up the protein and energy once she gets home....... I lived on soup and cream, mashed potatoes.....and cream and cheese....scrambled eggs for months until I could get my appetite back. If her unit has a dietitian it would be worth talking with them before she gets home.
Hospitals and parking are a national issue but £10 that lasts 20 days which is VERY reasonable.
I don't know if you know the roads up North but the main road from Inverness to Glasgow is notoriously bad in the winter. As I could not walk - I could not drive so my wife had to do all the driving......hard work in the dark, in the snow.
You are doing great.
Always around to listen.
not sure if you are allowed, we were; commercially prepared supermarket meals well in date (or canned) were allowed in daughters transplant unit, she had a space given in the kitchens fridge and they would prepare her what she felt like eating. They always had a stack of Heinz soups, beans etc anyway, and the lovely lady who did that served it so attractively it would tempt one to eat.
Yes, a sore mouth or throat made it very difficult for daughter but she did manage just about enough together with the build up-type drinks (Fortisip) which we used to ask them to whisk some ice cream into to make it more palatable plus add a few more calories, all kept her going. I also bought one or two junior sized meals which again worked ok as there was never too much on the plate.
As for so-called friends, yes I believe some simply cannot cope with such a serious illness or could not contemplate how serious a procedure this is, or are a bit too self centred to cope. This is when you find your true friends!
I am naturally a grazer so find it hard to have set meal time. Feel full after half the meal then hungry again two hours later. Dietician tells me to have snacks, little and often but the snacks available are usually sweet things not nutritious. Yesterday ordered a sandwich as well as lunch and put the sandwich in my fridge for later.
I could now write a book on how people handle bad news. Some people are phobic about illness or the thought of possible death. Some have so much stress in their lives they just can't take on another thing to worry about.
I think I can now spot people who want to 'show willing' they will help but wont actually do anything. The ones that annoy me the most won't give up any of their normal social life. They make you feel less important than their nordic walking, French class, bridge or even church coffee morning. I'd rather they just said they weren't available.
There were others that couldn't face involvement when I was very ill, but were useful later in recovery when I was starting to want to get about again. So don't dismiss everyone just yet, it may be their role is later in the play.
Fortunately this time round one of my friends has just given up work and hasn't yet got herself tied up in a social whirl. Obviously she still has a life of her own, but is much more available for giving me lifts and being sent on errands. I've told her to keep a tab on petrol expenses but she says she only wants something for the longer hospital runs.
Food was a major issue for me during my transplant adventure. Hospital food is terrible, my mouth was full of sores, i felt nauseated all the time. I lost about 30% of my body weight and it took over a year to feel good about eating again.
My advice is to be patient and don't pester her to eat. She wants to but just can't. Be ready to take care of her more than you expect.
Best of luck to you both and tell her to get well and come meet us online here to tell us all about it.
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