Hi @ChrisCKW @Summertime, @Erica, @Nichola75 . Chris hope your line insertion wasn’t too bad today and you are feeling ok. I had my pre transplant talk which was a bit scary but it is what it is…Heart and lung tests all ok so good to go. Couldn’t see the room due to Covid risk and was told that some of the TV’s don’t work! Feeling rubbish and without a TV for 4 weeks is my idea of a nightmare. Could take up cross stitch but it would probably be the Bayeux Tapestry after all that time 
Luckily you can take your own TV in but it’s all getting a bit silly with the amount of stuff that you need. At least you don’t have to take your own bed in! My oncologist had to do phone consult today as he’s been Covid pinged 
gulp!! They are a really lovely bunch though so hope to be in good hands, if they aren’t all pinged:crossed_fingers:
Take Care All xx
Hi @Lyn99
Addenbrookes didn’t do well today. They hadn’t checked my blood work history.
They need my platelets to be at 40. The last time they got to 40 was in March. But before and after that they bobble around in upper teens early twenties.
So me ready by bed, they look at yesterday’s blood results, platelets 25, procedure postponed. They sent me to get platelet transfusion at Haematology day unit where I reminded them I needed HLA tissue matched platelets. Matched platelets take 12-24 hours to arrive. So no way they could get platelets today.
Everything postponed to next Tuesday; 8am platelet transfusion, 9am Hinkman line (which they only fit on a Tuesday). Maybe sometime later that day will be admission if bed available.
P’d off puts it mildly.
I did remind them that my donating brother’s first grandchild is due on 15th, and that my stress is felt by Peter and his family too.
On the upside I had phoned and asked if I could look at room today. They agreed as long as yesterday’s Covid test was negative (it was), so I got a look at one room.
Bloods have dived again, which explains exhausted me.
@Lyn99 im taking my laptop and a hard drive loaded with films and box sets - is that something you can get organised? Lots of tv programs can also be streamed by iPlayer onto laptop?
Xxx
Oh @ChrisCKW it was all going so well too. You must have been so, so upset, I would be sobbing in a mess on the floor now.
You must all be getting anxious with Peter’s first grandchild due on the 15th.
Often I do not think that medical people realise the consequences of their actions emotionally, physically and practically on the patient and their family and friends.
Good thoughts for @Lyn99 there are so many programmes on iplayer, and other free streaming sites. I am on Series 5 episode 16 of the West Wing on 4od catch up and never-ending more episodes to go. After that I am going to watch ER from the beginning, but you might both want to pass on that one.
Hi @ChrisCKW, I’m so sorry, what a let down. Doesn’t fill you with too much confidence when they have to be reminded of pretty important stuff as well. No wonder you’re feeling pretty zonked, not just bloods but emotionally too after today’s let down.
At least you managed to see the room, maybe they didn’t want to show me mine as it sounds like there’s nothing that works in it! I have got a window though so that’s something.
My fold up excersise bike is arriving tomorrow but I get the impression that it might be a miracle if either of us have the energy to get on one from the talk today! I do have to monitor my pooh and will be given a chart to aid this. Thought that was quite amusing. Might be the only entertainment available !! Let me know if you have a chart too and we can compare 
Thanks for the tip, I do have films loaded on my tablet for longer chemo appointments. Not sure about the streaming as they have changed the wifi company and apparantly it isn’t very good either…Keep smiling 
xx
Hi Lynn I found when I was an inpatient last year audiobooks were a godsend for me. I hadn’t the concentration to watch TV ( the reception was rubbish anyway ) and the audiobooks took no effort at all. Another step forward for you now and will be thinking of you 
Hi Chris very disappointing for you! It’s such a big thing for us getting results…. Waiting for results and praying they are ok but when it’s out of our hands it’s so much more annoying and frustrating!! Wishing you well
Oo - ok so I’m intrigued! Do you monitor 
by?
Size
Consistency
Frequency
Colour
Special talents
Friendliness?
If I get a poo chart I’ll definitely add a couple of extra categories on 
xxxx
@Erica i get angry - they were such obvious little checks to make. I guess I rattled my cage enough that they are lining everything up for next week. But the stress has just added to exhaustion 
Xxxx
Thanks @Danmar - I’m hanging in and I’ll keep plugging away
Xxxx
@ChrisCKW , I have inside info on pooh chart. If it looks like a Mars Bar that’s top notch production. I think ours might be more chocolate milkshake after the chemo which is not so good… I love your friendliness and special talents categories they are a must have on the chart. Get some well earned rest and relaxation, big week coming up girlfriend!!
Ps Damson and Mr Sharkey send their love 
xx
Hi @Danmar, my husband suggested audiobooks he’s a big fan. I wasn’t sure as I’ve not used them before but you are right about taking no effort and it would be quite comforting to have a story being read to you, so I think I will give it a go. Thanks Xx
ChrisCKW, Lyn99
Oh what a disappointment Chris, I was there at Addenbrookes also today, having a tooth looked at prior to transplant. Turns out I need 2 teeth extracting before transplant🙈. Back again this Friday for the spinal injection.
I am there next week too at lung function clinic and something to do with radiation.
Xxx
Hi @Summertime, oh tooth extraction, that doesn’t sound much fun. Good it’s in the hospital though, I had to go to my own dentist, luckily nothing had to be done as that would have been expensive. Hope the spinal injection isn’t too bad on Friday. Xx
Oh Summertime 
so sorry about teeth. I know they try to check everything to prevent possible infection while we are neutropenic.
I’ll keep my fingers crossed that all goes well on Friday for you. Xx
Ok, so it’s getting closer and closer for @Lyn99 and me.
On Monday I think @Lyn99 is admitted whilst I have a preadmittance Covid test (and a line flush and dressing change on picc line). Tuesday is platelet transfusion and second appointment to fit Hinkman line (fingers crossed). Then later that day I MAY be admitted if there is a bed. Exciting times 
As an aside I was looking at soft pull on chemo caps, and I suddenly thought about Hijab hats. So I ordered a couple - soft, cheap, pretty and at least half the price or less than chemo caps.
Also new wig came, and it’s lovely. I’d messaged the customer service dept asking about petite caps and they were incredibly helpful. So - sadly I’m not on commission - a huge thank you and lots of praise to Simply Wigs (based in Huddersfield).
(They advised how to get wig VAT free too, and it saved me 20%)
Hi @ChrisCKW , it is really close now, almost seems a bit unreal. Here’s my timetable:-
31/7 Drive through Covid test (no movie or burger provided)
2/8 Admittance, with removals van for bike, TV etc.
3/8 Hickman line (gone for the sedation offered!)
4/8 Melphlan Chemo 
5/8 Rest day ( I think that’s code for feeling day)
6/8 Stem cell infusion 
11/8 GCSF injections to get those stem cells a’rockin
Maybe all Hickman Line insertion staff only work on a Tuesday? Good idea about the Hijab caps. Glad the new wig is a good one, internet surprisingly good for that sort of thing. Didn’t know about the 20% on my first one but got it on the second…I will be thinking of you, Lots of Love and Luck coming your way xx
@Lyn99 and @ChrisCKW I am sending you both so many virtual hugs that you will both need an extra removal van just for them. Use them as and when required and if you need more I will wing to you instantly.
Look after yourselves and keep up the lists.
My chemo is a triple whammy -
thiotepa
Fludarabine
Busulphan
On it for 4/5 days, prob starting 4/8
Then anti rejection drugs
Then prob transplant on 11/8
@Lyn99 Have they said to you the bed is dependent on availability? I’ve been told that as discharge isn’t guaranteed but dependent on health of patient, so bed may not be on that exact day. Makes booking the removal van a touch difficult. And the ward is on 10th floor so the grand piano can’t come
Thanks @Erica - it’s all a bit real feeling now! Xxxx
Hi @ChrisCKW, sort of. Apparantly there’s no-one on the ward as of last week but she said if it got busy might have to go in Sunday night rather than Monday. All a bit strange really as it’s not a procedure that can be moved around too much. I imagine getting there and you have to fight other patients for the bed! Xx
@ChrisCKW , you seem to be getting more for your money on the chemo side of things than me. Mine is however being specially driven in from Bath, so it’s probably quite posh chemo. Quality not quantity…As I haven’t seen my room I think there will be a piano provided in my lounge area