Hello folks
I've been waiting for some news before posting and now I have lots! First major one - we've been approved to be adopters which is fantastic! we are so pleased! its been quite an experience, but sure it'll be worth it. we'd be now waiting for a match, but as i'm about to start treatment its going on hold until i finish.
the next news is i have my dates! start cladribine on 11th June for 5 days then thursday after we start rituximab weekly for 8 weeks. my neuts are now 0.6 so i'm getting a bit wrung out, but been very lucky as no bugs etc. not even a runny nose!
so my consultant wants to avoid the bank hols, he was worried i'd have probs and everyone would be eating cake. i remember saying this to Claire about her start date, so it looks like just my hospital doesnt work bank hols!
not great on blackberry, so sorry about likely lack of grammer and typos. hope everyone else has the sun shining on them - have a lovely weekend all
many apologies for my absence - had a small hiccup and have been in hospital for the last week!
Was feeling all lovely except for being tired until last Weds (16th) when I went really tired. Thurs I could hardly get out of bed but didn't feel ill, just exhausted. Temp started to rise later afternoon and when it leapt to 38.8 decided to call the hospital! Funnily enough they wanted me to come in and I never left!
Had one type of IV antibiotics Thurs to Sat but still temp wouldn't settle and then they swapped me to another type Sat night and hey presto, temp lovely by Monday. My neuts were 0.76 when I went in and had dropped to 0.05 on Monday so even though temp settle there was no way they were letting me go anywhere. No sign of infection anywhere which was good, so just old fashioned neutropenic fever. Neuts wouldn't rise so I got 3 GCSF injections that got them going. Increased to 0.42 on Weds and 0.9 on Thurs so they let me home last night - Yeah!! Platelets are up to 214 which is the highest they've been in years and total WBC is 1.3.
The only real issue left is the rash the dammed co-trimoxazole has given me. Its everywhere! I've only taken 4 doses and after the first 2 I could see the rash but the docs thought it was shingles so upped by aciclovir, but when I took the 4th dose of co-trimoxazole on Monday 21st, it went mental.
All up my arms, back, groin, chest, everywhere. They've taken a skin biopsy to check it is the drugs not neutrophilic dermatitis and I should see a dermatologist next week.
Back to hospital next Tues for a check, but hopefully this is the upward curve. What a week!
Glad to hear everyone's well and Wendy - fantastic news on securing adoption approval :-) Hope your treatment goes ok -please keep in touch.
Best wishes for your treatment, and great news about the adoption.I guess you've got the heatwave in the North East, almost too hot to do anything, we could do with an air-conditioned planet... maybe we have one, with the cool breeze, it's far too hot inside so I'm off back to the garden lounger.
I'm glad the docs sorted your fever out in hospital - pity about the rash though. It's strange how some people stroll thru the cladribine chemo and others don't. Amazing how quickly your neutrophiles recovered with the GCSF (neupogen?) jabs, so I hope the rest of your recovery goes swimmingly well. Tell you what, I'd kill for your platelets, great stuff.
Congrats to Wendy on her progress towards adoption. My tealeaves still give me October as the date to look for. (I had been using goats' entrails but I've had complaints from the council).
As regards my other friends on this site - I've noticed a few people having temporary relapses. THIS HAS GOT TO STOP. I insist that you all start getting well again immediately! Don't make me come over there.
If you all promise to get well by Xmas, I'll tell you my favourite joke. A boy and his dad were watching TV when the doorbell went. The boy went to the door. It was a wooden door with a wooden key and it wooden open. Finally he managed it. He went back to his dad and said "Dad, there's a man at the door with a bill." His father said "Don't be silly, son. It must be a duck with a hat on!"
Did I ever tell you about the lady driver who swerved to avoid a child - and fell out of bed!
Hi everyone! I'm a bit frustrated as recently my reply method is up the shoot! Really not sure what's up with it as I can't do spaces for paras so apologies. WENDY; many congratulations to you and hubby and hope that following your chemo etc it will not be too long before a match is found and you are able to enjoy giving a child lots of love and security. Also wish you well when your treatment starts in June. CLAIRE: Pleased you have overcome the couple set backs. I also developed a rash but it was the result of the aciclovar stuff but mine didn't take too long to disappear. I also had problems with the antibiotics. Hope your rash it getting better especially in this hot weather it can't be comfortable! ALL: What I would do to have some of your various counts espec ially platelets!!! Mine have never reached anywhere near what you folks have but I'm surviving it all. I may not be in touch for a few days so please don't worry will let you know the reason when I'm back in touch. Take care one and all and wishing you good health and don't get sun burnt - the hairies hate it!!! Love to you all. Florence
Hello Everyone ... I can't believe I have actually got here. Well, hopefully this gets to you all and it does not disappear somewhere in the heavens. This is a short note to see if this works for me. I have been laid low with another dose of pneumonia but still here and fighting fit spiritually. My love to you all and much healing energy. Nice to read about all your blood results .. helps me because here in dark africa ... they know no-thing Anyone know what stimulated lymphocytes are? That's what I got ... and no one can tell me here what they are or why they are stimulated .. by what??? Big hugs Dianne
Hi Dianne, good hearing from you, hope you are recovering from the pneumonia, I know from personal experience it can be real nasty - mind you, when I had it way back when, I didn't know I had hairy cell leukaemia lurking under the covers.
Sorry, I've no idea what stimulated lymphocytes are..... I binged them (well it makes a change from googling) and got a whole load of undecipherable medical research stuf, oh and this gem from wiki... "An increase in lymphocyte concentration is usually a sign of a viral infection" at least i could understand that bit!
Well, our recent heatwave has disappeared overnight, replaced by rain... no pleasing us Brits, I mean it was getting far too hot but now I'm missing the sun already. .
G'Day every one in this wold wide HCL club. Who is the President by the way i think we should have one voted in every two years. So seeing as i thought of it i should make some rules up. To start with i think he, or she (i dont want any sexism in this club) should have, or be thinking of having HCL. They should have to know where their bone marrow is, be born on Planet earth, and be over 21 years of age. Please guys feel free to think of any more stupid, err sorry i meant, relevant rules for this special club of ours. Seeing as its the Queens juberlee if we asked nicely do you think we could get a mention in dispatches? So to start off this memerable first election to the world wide HCL club my vote is for Frank on account that he has had it the longest and he is a man i can look up to on account that he is 1 inch taller than me. So get your votes in i have a Judicature (If i spelled that wrong i am sorry me battery is flat in my spell checker) Waiting in every country. Well i think i have one in South Africa Dianne but he has been shot twice and raped once and i havent heard from him in a week!!
I am well thanks for asking bye the way.
Dianne i hope with all my heart that you are recovering from your Pneumonia and i kinda thought that if your Pneumonia didn't Stimulate your Lymphocytes into action then not a lot would. But i dont really know i didn't bing,twitter,Facebook or Google that so i am probaly wrong.
I hope that everyone is living their life the best they can with as much love and happyness in their soul as can be hoped for.
shey bobby, LOVING the president idea! before you'd got to his name Frank had my vote. my only concern is that he must have lots of skeletons in his cupboard for us to splash all over the tabloids. or maybe he does??
what a hoot!
now frank, you need to start kissing babies and waving while on those long walks around your constintuency. you need to practice your cheesy smile and cheesier slogan.
I'm touched.... that must be the first time anyone's ever voted for me in my entire life!!!! Maybe I should take out American nationality pdq and make a dramatic late entry into the US Presidential election? I mean poor old Obama looks lost like a rabbit in the headlights, desperately grabbing media spots with David Beckham and a sadly very aging and not-at-all-well-looking bob Dylan recently. The stuff they show on UK TV news! And the other guy, BaseballlMitt Romney - always think his name should be Mutt not Mitt - looks like a disaster waiting to happen.
On a technicality bobby, surely I haven't had the hairy things the longest? I go back to 2003, gee, nearly 10 years, you get less over here for murder.
Guess what, I went to see THE TORCH the other day, passing a packed pub near here. Hundreds thousands millions lining the route, luckily I got served before they ran out of beer. It looks better on TV, ah whatever. It was a toss-up between going to see THE TORCH (well, one of the several thousand torches) or running my own Jubilee Queenie Street Party!
Oh, hope you're all keeping well, must put my washing out now not that there's much sun here today, seems like a male housewife's work is never done - already been a good boy and done my ironing.
