[tomParticipant]

Hi Chris

Well a warm welcome home and long may it continue 😀

As for me I was a wee bit scared when I was at home at the start ie not having a proper nurse on call and if it will keep n keeping better it worked and still is so you my Friend enjoy that Cuddle its a good healer 😉

Love to you both
Tom "Onwards and upwards" xx

[bikerchrisParticipant]

Hi Tom,
I agree, I went back into the Ward today for a last blood test and to get the 'all clear' which I did, so brilliant. But all the smells, and noises on the ward suddenly come back to you, and the fact that you are being watched over all the time.
I am taking it carefully, happy to potter around, but Lena is cooking some wonderful food, and it is all helping, which together with cuddles 😉 should have me right as rain in no time! Definitely Onwards and Upwards!
Best wishes,
Chris and Lena.

[bikerchrisParticipant]

Hi Megan,
Thank you, and I am really pleased that my ramblings have been of help to you and Phil! I really shouldn't worry about beating records, Tom is obviously a superhero with his 16 days! I was only given my proper discharge today, and my NP's are still 0.42, so a bit under the 0.5, and that has been 28 days since I went in. I feel really good today, and yes, more beer with dinner 🙂
There were really only about 5 days when I felt bad, and my mouth was uncomfortable, and the rest was no worse than I have been through before, so don't worry too much (easy to say I know).
Now the wait to see how successful things have turned out….
Our very best wishes to you and Phil for your SCT which I am sure will be successful. Did you see that thing on the news today about the stem cells from dog's noses being used to cure paralysis? just incredible!
Chris and Lena x

[bikerchrisParticipant]

HI Vicky,
So glad to hear that all is looking good for Colin for this week, I am sure it will do him the world of good to be at home with you, and away from the Hospital.
My NP's still only 0.42, but they are on their way up, and I am back there on Friday for a monitoring checkup. Got the all clear today though,and home for good, so I am sure Colin will be snapping at my heels!
Love Chris and Lena xx

[tomParticipant]

Morning Chris and Lena

Yes the ward was a comfort as much as we wanted to get out and home 😀 a strange strange feeling :-S but when home for that day and a bit it all falls into place.

I was like you Chris 5 (ish) days when I was a bit too bad not wanting the young bride (Elaine) to visit as I spent most of it asleep, the nurses used to come and take my temp and bloods (and i had a femoral line fitted, so was woken up te get at my line I told them to do it when am asleep as long as they aint got cold hands Lol

Keep on Keeping well Chris and Love to you Both
Tom "Onwards and Upwards" xxx

[meganjaneParticipant]

Hi Chris and Lena,

Yes, Phil and I did see the little dog on the news, science is amazing and getting better at fixing things all the time. I never really had much time for science before this year but I am amazed at everything I have learned since Phil's diagnosis and astounded at what the human body is capable of. It gives me hope.

I am trying not to worry too much, one step at a time. Phil starts his tests today to make sure he is fit and healthy for the transplant – that amuses me as our definition of fit and healthy has changed quite a bit this year 😀 Phil is then due for his chemo to start the mobilisation on Nov 26th and then the stem cell harvesting on December 5th and in for the transplant on December 17th. When you break it down into individual stages it is not so overwhelming so we will start with all the tests this week and then go from there.

I hope your NP's quickly jump above 0.5 and then continue upwards. Are you enjoying Downton? It was as good as ever, roll on the Christmas special!

Megan

[VickiParticipant]

Hi chris

Just wondering how you're doing now you're at home? Colin still not back home yet? Have you had anymore pain in your arms? Colins is still there?

Vicki

[bikerchrisParticipant]

HI Vicky, I have put a reply on your Blog,
Chris

[KesParticipant]

Hi again Chris
Just been having a long read regarding your SCT .. It sounds very scary !!!! I haven't got a date yet .. Don't know if I should have read it really .. I knew it was going to be a long haul but !!!
Really pleased you are through it & on the road to recovery .. Take care & stay we'll

Regards
Karen

[tomParticipant]

Hi Karen

Its a shame I never done a "Blog" or kept notes? as am sure it would help reading what I can recall going through during my 18 month/two years you would be running into the hospital to get it started 😎

We all go through it in differant ways and you just might beat my 16 days 🙂

Good Luck

Love Tom "Onwards and Upwards" xx

[bikerchrisParticipant]

HI Karen,
I think you will find it easier to prepare if you know what you are letting yourself in for! It sounds scary all at once, but taken one small step at a time it's much less daunting! It's soon over really in the scheme of things.
They said from the start that most patients have 6-8 cycles of CTD, and my pp's took a long time to reach the 'plateaux' that they look for, they did cut my chemo for a while as my np's were dipping too much. my pp's only came down to 17-20, but everyone is different.
I had none of the trembling which you are suffering – it must be a reaction to one of the meds, maybe the steroids?
Good luck and thanks for the reply,
Regards, Chris

[bikerchrisParticipant]

I had my latest check up at Outpatients today, and we did have to be patient too!
The good news was that my neuts are up to 0.95, and they have cut most of my meds now! We celebrated with a pub lunch and a look at some of the flooding which has been bad round here.
I am feeling that things have really turned a corner and that we may have kicked Myeloma's butt! I have to go back in 3 weeks to see how my pp's are doing, so this long thread may be nearing its ending.
Thanks to everyone who has posted replies which has been a huge encouragement to me, and I hope my ramblings are of help to new Club members!
BFN, Chris.

[foxy555Participant]

Hi all

Hope you all keeping well!

Just a couple of quick questions if you don't mind.

Pete is going into Musgrove on 5th December overnight for a line to be fitted plus some chemotherapy (Is'nt is strange, you sit through a consultation and come out not knowing anything!!) The Consultant also mentioned that Pete would have to inject himself!! What with!!! Can anyone shed more information?

Again, we feel really silly that we did'nt ask all the right questions, but sometimes I think you just want to get out of the consulting room.

Anyway my other question is, will I be allowed to be with him on the 5th or do I just visit later in the day. This is his first hospital treatment after finishing CDT and then he will go to Bristol on 17th for the stem removal.

I am sorry to bother you with such trivial questions, but I need to know to book time off work if necessary .

Regards

Ann

x

[VickiParticipant]

Hi ann,

Re the line and chemo. The line was fitted in a theatre at hospital so I wasn't allowed there but I was allowed to wait with Colin beforehand a bit and obviously the usual after. Colin was a bit sore and a bit worried about getting used to these dangly bits protruding from his upper chest/arm. But actually he did get used to it and it was a godsend for taking bloods etc when he was (sorry is still!) in. It just needed to be flushed weekly with heparin. Re the chemo Colin did not have his on the same day, but I wasn't allowed in with him for that so just hung around til finished.

Re the injections, that will be the gcsf injections I've gone on about, they are used to mobilise the stem cells I to the blood stream. They are done specifically to a time, on the first go, they were 6pm at night. The first time round we got the district nurse to do it, but as Colin had done his own Fragemn injection during treatment the next time he did it himself (they said I could do it form him but politely I declined!.

It is a bit nerve racking but it's all to the good, getting those little cells out. Sooooo good luck with your harvest. Are you going to Bristol for that? If so they are great, look out for the nurse Debbie, she is lovely and so is dr sohail. In fact they are all lovely there, if that's where you are going!

Keep us posted. It's amazing what you can put up with when going through it;-)

Vicki and I think Colin is coming out tomorro, hopefully for longer than one and a half hours

[VickiParticipant]

Chris

Just wanted to day the very best of luck to you, and hope that your recovery carries on in leaps and bounds. Those neutrophils up to 0.95 that's amazing. It must be that beer you've been drinking!

Do start and new thread so that Colin and I can keep up with your progress!. Colins neutrophils have come back up to 0.7 which was after a single boost of gsct. All the other bits in the blood seems to be doing ok. He's been diagnosed with something called polymayalgia which is some kind of rheumatic in the muscles. So he's on steroids now which have made a difference already. I am worried about it due to his just having had an SCT cos he didn't have this before!, however they seem unconcerned.

Enough of my ramblings, best of luck to you and lena and a lifelong remission

Vicki and Colin x

[Author]

Posts