Hi @ChrisCKW
I’m sorry to hear the sad news about your sister-in-law, it must be an incredibly difficult time for you and your family, especially when you are going through so much yourself with your own health.
It is great that you have reached out to everyone on the forum and they are able to offer their kind support.
Please do not hesitate to call our Support Team if you would like to talk anything through, we are only a phone call away on 0808 2080888.
Best Wishes
Jo
It’s much better after the last dressing on Friday. It still lets me know it’s not healed if I turn on to it in the night, but it feels so much better thanks @Summertime Xx
Thank you @JoBloodCancerUK - I’m a chatty person usually but if I’m v ill or down I’d rather not talk until I can cope.of course I’ll ring the support line if I can’t cope, but I tend to grieve on my own xxxxx
Hi @Summertime , I was just told that I would have no immunity to anything. Not to go into public places or use public transport. I go out for walks locally and go to the hospital but that’s my lot. With covid being horrendous in Wiltshire I just don’t take any risks that I don’t have to. My biggest worry is my son at college and him using a bus but I get him to do lateral flow tests for some peace of mind. My first covid jab should be the 2nd week of November so will feel a little more secure once this is initiated. Xx
@Lyn99 that’s good news abut getting your covid jab.
Had a bit of movement on my cells. white blood cells are 0.01, neutrophils 0.02 and platelets 207 they jumped from 137, 176 and today 207. Woke up to a pillow full of hair🙈. So need to get the clippers on it again.
Feeling ok, eating s a chore and having a shower is exhausting 
I feel like an old lady 
The sun is streaming through my window 
xxx
Hi @Summertime you are an expert on blood test results, I don’t expect it was something you ever wanted to be an expert on.
It must be scary to wake up to a pillow full of hair and to have so little energy.
Just think what you and your body have gone through medically, emotionally, physically and practically.
Look after yourself.
Hi @Summertime
You’re getting there with your bloods - that’s great news.
I had a terrible time getting that cyclosporin down. Awful smelling stuff, and huge tablets too. At one point I wasn’t able to keep anything at all down - not even tablets- so they were able to give me the cyclosporin via a drip. Might be worth asking? And once you’re home and getting a bit better, they don’t seem to be half as bad. Still smell evil, but it’s not such a trauma getting them down. Hope that helps, knowing that.
Oh my goodness, the energy needed to manage a shower, huh? Horrendous! I have to admit to skipping a few here and there - the thought of it was too much. That went on for about a month after I got home too - it was a massive effort. But things do and will get better. I felt ancient too, for about 2 months after the Stem cell transplant. Walking, showering, doing all the pills, so many medical appts - it’s exhausting. And then slowly but surely it isn’t. You’ll get there.
And I’m so sorry to hear about your sister in law. Life is really being unkind to you. You’re amazing to keep going so stoically. But it sounds like you are very, very loved and have much to keep going for. You’re doing tremendously well.
Much love to you, and your family too. Xx
Hello @Summertime,
I’m just hoping you’re OK as you reach the end of such a challenging day and reaching out with a virtual hug.
@Fullofbeans they have now reduced my cyclophorine thank goodness so getting on a bit better now 
xxx
Thank you @Coastgirl, we got through. I decided to come off social media for the day as I knew there would be lots of posts and photos from Joes friends. Back on today and the messages and tributes are all very touching xxx
Ah brilliant news, @Summertime! And it gets easier and easier to take as you get better and the doses get smaller.
Thinking of you as undergo all this. X
Levels are coming up nicely which is encouraging. Except Monday afternoon I developed a temperature which has been spiking ever since😏. Also got some red spots on my body and legs and a sniffly nose🤷🏻♀️. I’m on 2 lots of antibiotics but they don’t seem to know whether it’s due to an infection or just part of the cell engraftment. Either way discharge is delayed until these issues settle.
Can’t complain really as have only been here 3.5 weeks and I know a lot of people are much longer xxx
Hi @Summertime never worry I, for one, don’t contact people on here expecting a response it is because I want them to know that I am thinking of them.
You are in hospital in the middle of treatment and you also have a spiking temperature, sniffly nose and red spots.
It must be frustrating that your discharge is delayed.
Your health comes first and social media means that so many more people want running commentaries on how you are.
Look after yourself first, that is the most important thing and just know that we are all sending you virtual hugs.
p.s. but we do love hearing from you !!!
Sending lots of love and special wishes. Always in my thoughts X
Hi @summertime, thinking of you. It’s nice to get home but you’re in the right place to monitor spiking temps, etc. Wouldn’t be great to end up having to go back to hospital. Hopefully this will all settle soon. I’m glad the tributes were all touching and that you managed to work through the anniversary. It must be incredibly difficult for you. 
xx
Yes, @Summertime you are doing brilliantly getting through the anniversary plus all your treatment. I am in awe of you.
Hugs all v tired from clinic today; haematoma still very concerning will have it checked on Monday when I go for bone marrow aspiration xx
Hugs all, love too, chat when I’m not quite so shattered xx
Ps platelets took a real dive so that’s worrying 
There is so much going on for you. I can only imagine how exhausted you must be. Thank you for updating us all. Now it’s time to rest. I hope you manage to get some sleep. Lots of love X
Hi @ChrisCKW you must be so worried and absolutely shattered.
The main thing is that you look after yourself an the old fashioned word is ‘cosset’ yourself.
We are not going anywhere and just sending you loads of love and virtual hugs