[MariParticipant]

Hello everyone,

I know I have not been around much lately, life has been a bit frantic, with hoping for Steve to go in and my dad has been rather poorly in North Wales however it is settling down at last.

Steve went into Kings' a week last Sunday but was sent home on Monday with an infected scratch on his finger, after a week of antibiotics he went in again, onto Derek Mitchell ward and he had his melphalan today. When I got there at 5.00 pm today he was just finishing the last bag of saline, flushing through the chemo. So far he is feeling very well and has not had any side effects. We have both been trying to remember when the problems start to kick, but I expect it will be a few days yet. I have seen so many supportive comments from so many people wondering what has been happening to us, thank you so much and I am sorry I have not been around so much recently.

I know a great number of you have been undergoing treatments and I hope all is going well for you,

Love Mari xx

[bikerchrisParticipant]

Hi Marie, Good luck to Steve during his treatment. I am waiting for my date to go in for my first SCT, so I will waiting to see how you both get on. Send my best wishes to Steve and I hope that he carries on feeling well and in good spirits, great to hear of your progress and very best to you both,
Regards Chris

[AliParticipant]

Hi Mari

Just wishing Steve all the best for his SCT and hope that it all runs smoothly from now on.

Dont apolologise for not being around! seems you have had alot going on. I hope everything is ok with your Dad now.

Love Ali xx

[DaiCroParticipant]

Hey Mari & Steve

Just a note to wish you all the best for the SCT process… I hope it is as smooth as possible with few side-effects… and that you will both be home within 10 to 12 days and ready for the road to recovery.:-)

You have both been here before so you know what to expect… and I hope your expectations are high.8-)

Regards

Dai.

[tomParticipant]

Hi Mari and Steve

Am wishing all good things for the SCT I hope its a fast recovery and soon out and getting fit.So head up and straight in 😎

Love Tom "Onwards and Upwards" xxx

[andygParticipant]

Hi Mari & Steve
Good luck with Steves SCT I hope everything goes smoothly and a long remission is achieved.
Wishing you well.
All the best.
Andy xx

[eveParticipant]

Hi Mari

I f I am correct that is a few floors up,turn left out of lift and walk down and it is on your left 2 wards through one door.!!!not very good views from windows,but bigger rooms,and from what I remember they would even do cheese on toast,bigger kitchen.It is roughly half a mile all together from Denmark Hill station.Slim was in there the first time ,Waddington second time.

Will be there with Slim on the 3 of October,

I suppose you are working and visiting of an evening,it must be hard work,you make sure you get some rest,the hard part is Steve coming home.
Good luck to you both,you will be smelling the sweeetcorn by now lol.Eve

[VickiParticipant]

Hi Mari,

All good wishes to you for doing the supporting role, and Stephen doing the really hard work. Hope he sails through it will few/no problems and soon on the road to recovery.keep us posted :-). Colin has some revised dates but I'm not putting them in print….only when the little cells are in the bag literally.

Hope that steve recovers quickly and has a long long remission 🙂

Vicki and Colin x

[MariParticipant]

Hello everyone,

Thanks for your good wishes. Steve had his melphalan on Monday and all went well. He has had 12 bags of stem cells back over three days finishing today. The nurses have been watching him like a hawk for an allergic reaction and he was fine until last night when he started to itch. They are filling him full of antihistamine and he is feeling a bit groggy. I have not been to see him tonight as I am feeling a bit sniffly and I dont want to take anything in to him. Derek Mitchell ward is where they do a lot of donor transplants and they are extra careful. I usually dash off as soon as lessons finish at 3.45 and get into the hospital just after five. Yes Eve, you have described it perfectly. I am working on getting my walk from the station down as quickly as possible, I hate hanging around on Denmark Hill Station. I usually get home about nine ish and then flop into bed, ready for the next day. Steve's appetite is already starting to wane and I am trying to think of tasty little bits to take him. The dietician has told him to graze, little and often. Any good ideas anyone?
It is surprising how little I remember from last time, for example how long does it usually take for the stem cells to graft? I have 15 days in my head but I am not sure. Steve was in for three and a half weeks last time but he has told to expect to be in a bit longer this time as he has fewer stem cells. He had over 5 million last time but has 2.2 million now. We are just going to relax and go with the flow, there is nothing we can do to speed things up, in time things will run their course and he will feel better.
Thank you everyone for your kind words,
Love Mari xx

[tomParticipant]

Morning Mari and Stephen

Well done on the SCT its now as you know a waiting game for Steve to get it all put together and start the healing part. Good Luck to you Both and dont forget mari you also need to rest 😀

Love Tom "Onwards and Upwards" xxx

[eveParticipant]

Hi Mari and Steve

Soon be all over Mari,but take it easy that journey alone is a horrible one,I was so tired just going up and down all those steps at the station was awful.

Slim had a driver for meds,could not keep anything down,even now he will not touch stuff he was sick on,cold milk and ice cream seemed to help.I just stocked the fridge with little pots of custards yoghurt and rice puddings,they were very good at the hospital,always left food just in case he could get anything down.Still has problems with eating,not like Slim at all,nurses point of view,no point eating if it makes you sick,just fluids.

They have a supplement that is a mouthful only which is 100 cal a time,they call it shots,if you can get them down him it will build him up.Dietician supplies them.

I took I Pad in for Slim,so he was able to Skype and do Face time,not that he felt like it,but eased the girls mind,when the could get him to reply.

Also got physo to get him a small peddle machine in room,a few minutes excises to help his legs,never got to the gym but gave him routine.worth doing if he has to be in longer.

Slim also enjoyed the frothy coffee,s from the food place I use to get one for him on the way up.I also took some packets of them in,plus hot chocolate,and soups.

Good luck Mari,take it easy,I also got someone in to clean just 2 hrs,kept her on,she comes in and gives kitchen and bathroom a good clean,keeps me on top of things.worth every penny. Love Eve

[MariParticipant]

Thank you Eve,

Steve is going down faster than I remembered last time. He has a sore throat and mouth and cant face the idea of food. We got him to eat a yoghurt and some ice cream today but just the smell of his meal turned his stomach. He has developed another allergic reaction so is covered in a very itchy rash which makes him hot and uncomfortable. It turned out he was running a temperature as well this afternoon and was better this evening after some paracetamol. At the moment I cant get him to even contemplate food but I know things will improve with time.
Steve has his i pad with him but the internet connection is not great and he cannot get the bandwidth for Skype, but I dont think he can be bothered with it at the moment. He texts me and the children each day and we talk every evening when I get home. I usually get in about 9 ish ready for a cuppa and my bed. I agree with you on the cleaner, I work full time and usually get home about 6.30 ish so it's a luxury I have had for a while. Mind you the house is not really getting dirty as there is no one here most of the time! My daughter is home this weekend and we drove up together which made a nice change. My son lives in London and he came in to see Steve as well. It's not often that all four of us are together these days, shame it could not be under better circumstances.
Thank you for the food ideas, I am going to try him with some ice lollies tomorrow. I hope you and Slim are able to enjoy life and that he is feeling well now,

Love Mari xx

[tomParticipant]

Morning Mari and Steve

Well lets hope its faster on the way back up for Steve, its a long wait (or seems it) waiting to get ill before you can get better :-S strange as it is, the sooner they work out how to make you better without making you Ill will be a blessing for everybody 😀

Thinking of you on the Road to remission.

Love Tom "Onwards and Upwards" xxx

[MariParticipant]

Hello everyone,

Just a quick note, I notice I have been repeating myself in my posts, must be losing it!

Anyway Steve's neutrophils were down to 0.4 yesterday. so he is nearly there, and then we just wait for the graft to take and his bloods will start to move upwards. He had three day Zeros so today is Day 4 and they will start GCSF injections on Day 7. I feel things are moving on but I doubt he would agree with me. He just feels dreadful and is really struggling with eating, he is suviving on ice lollies, yoghurt and jelly at the moment. He knows he has to try and struggled to get a quarter of a piece of toast down, with a bit of cheese on it. I think he did more for me than anything else, but at least it is a few calories.

I hope all is going well for everyone else, I am sorry I dont have much time to read everyones posts but I am wishing you all luck,

Love Mari xx

[mhnevillParticipant]

Hi Mari

Just want to send greetings to Steve. Glad he is well on his way even if it has been a very bumpy road.

Hope Steve's appetite returns soon.

Lots of love.

Mavis x

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