Hairy cell leukaemia

Hello everyone

I was concerned as to the reason why I wasn't getting any notifications - I re-registered and ticked the request to receive updates but seems as though I did not click on "join this group" so hopefully I'll be in touch more regularly.

Anyway, I've had a couple really bad bouts of flu recently. However, today I went for my 6 month follow up and I'm pleased to announce that I'm on my very first annual appointment!! However, my consultant expressed concern with regard to my iron levels because my platelets have jumped from my average 84 to 132!! My platelets have never ever been above 90!! I had to provide more red juice today so that they could check my iron levels and also my thyroid so should know in the not too distant future what the outcome is. He did say it is not anything serious hence my annual appointment.

Frank - thanks for asking but I managed to raise just over £300 - not bad eh considering I couldn't do the run. I'm not running yet as my knee is really giving me problems. I did the exercises and then it got worse than ever. So - the physio suggested I went back to basics but as I've been so poorly have not done much of the exercises and next appointment is Tuesday. Oh well - some you win some you don't.

I have a lot of catching up to do on all your postings so forgive me if I haven't responded individually to each of your messages.

Bobby really good to see your postings on here and Chris seemingly also busy.

I do hope those of you with various ailments etc other than the hairy monsters will find cures for them or at least you get some reasonable quality of healing.

Keep warm for those in the northern hemisphere especially those in the UK with all the flooding and snow we've had in recent weeks.

Love
Florence

Hello everyone

Sorry I've been AWOL. I'm pleased to say I'm back at work, almost full time and being back is great.  I still get awful tired now and then, but hey ho, thats not a shocker is it?

Been to hospital this week for my 3 month follow up. We had to decide if I was to have a bone marrow aspiration or not. If the hairies are still there I'd have more treatment. However, before we'd even arrived we'd decided unless my neuts were below 1 we didn't want it. 3 rounds on chemo has been enought thanks!

I was so nervous. But the great news is my neuts are 6.4! 6.4!!!! How's that for showing off? Platelets are in 350s. So officially in remission - hurrrah!  He even agreed not to see me for 6 months, ironically the appointment is the day before my 7th year anniversary of being diagnosed. So off all tablets too - its amazing what a difference that makes, putting away the tablet dispenser. Its a landmark in itself.

Nothing much happened with adoption - still waiting for a match. Christmas won't be ideal this year  but I'll be here for it so we're grateful for that.

I hope everyone is getting ready for a lovely xmas and they are keeping those hairies at bay. Take care all, Wendy x

Great news from you Wendy..... hey come on, you don't need all those platelets and red cells, share them out and pass a few on to some of us!

Good going on to 6 month checkups, and coming off medication.

Keep warm and have a good festive period, Christmas and the New Year!

can you believe it , coming up to Christmas again ! Didn't we just do this a couple of months ago? Wendy you finally got there.well done no more pills thats great news.

I forgot to tell you guys(or did i. Can't remember) i had my yearly test and still in the normal range but that was way back in September god knows what bubbling away inside today. I was sixty last Tuesday and i was treated to a Helicopter ride over our city that was good fun.

300 pounds!! that was an awsome result Florence, and you wasn't even in the run. I wonder how much you will clock up when you are fit enough to enter. you certainly miss your knees when they let you down my right one is about twice the size of my left one and i am on the longggggge list to have it seen to. every time i move it i hear a nice crunching sound coming from insde it . I should have been more loving to them when i was younger i guess.

I hope you are wrapping up nicely Frank when you go off on your walks across the moors i have been looking at your weather the last couple of weeks and i dont like what i see. But having said that it goes so much better with Christmas than frying in 35 deg temp's.

Well i am off for some grub hope you all have a great time as the Christmas season rolls on.

Dashing through the snow with a one horse open sleigh...........................

Bobby

hi Bobby,

Good hearing from you agaiin - wow, you've hit 60??? but you only look about half that in your photo!

Tell you what, I found a bald spot on the top of my head the other week, gee, just as well I'm a six-footer, not many people get the chance to spot it, haha!

Aw, tricky chaps knees..... hope yours are ok, well, at least one of them sounds pukka!

I'm ok except now got glaucoma so on eye drops for ever, not sure if I posted that before!

Yeah, Christmas soon be here - I've even put some dekkies up today. So....  here's a few seasonal jokes.....

Christmas Kiss
Romeo: What would it take to make you kiss me under the mistletoe?
Juliette: An anaesthetic.

Christmas Snack
Good King Wenceslas phoned Domino's for a pizza.  The salesgirl asked him:
'Do you want your usual - Deep pan, crisp and even?'

Christmas Crackers
What do lions sing at Christmas? ...... Jungle bells!

When is a boat like a pile of snow? ...... When it's adrift.

How do snowmen get around? ...... On their icicles.

What does Santa call reindeer that don't work? ...... Dinner. 

What do you call the fear of getting stuck in a chimney? ...... Santaclaustrophobia

And finally, anyone who believes that men are the equal of women...... has never seen a man trying to wrap a Christmas present!

Have a great festive period folks!!

Frank sir

That was very kind of you to say so but to be fair that photo was taken when i was a very young 55 year old i will have to update that so we can see the differance he he

I had to laugh when i read about your bold spot. ( My father always said, "that grass never grows on a busy street" ) unless you go to one of those changing rooms with back to back mirrors, to try on clothes, you never get to see it . I had a shock of my life a couple of years ago so i have stopped shopping he he. And being a short arse people get to see it .

keep well

Bobby. Oh before i go this is the joke of the year for me

A young man named John received a parrot as a gift.

The parrot had a bad attitude and an even worse vocabulary.

Every word out of the bird's mouth was rude, obnoxious and laced with profanity.
John tried and tried to change the bird's attitude, by consistently saying only polite words, playing soft music and anything else he
could think of to 'clean up' the bird's vocabulary.
Finally, John was fed up and he yelled at the parrot, and the parrot yelled back.

John shook the parrot and the parrot got angrier and even more rude.

John, in desperation, threw up his hands, grabbed the bird and put him in the freezer, for a few minutes the parrot squawked and kicked and screamed.

Then suddenly there was total quiet, not a peep was heard for over a minute.

Fearing that he'd hurt the parrot, John quickly opened the door to the freezer, and the parrot calmly stepped out onto John's outstretched arms and said

"I believe I may have offended you with my rude language and actions, I'm sincerely remorseful for my inappropriate transgressions and I fully intend to do

everything I can to correct my rude and unforgivable behavior."

John was stunned at the change in the bird's attitude, and as he was about to ask the parrot what had made such a dramatic change in his behaviour, the

bird spoke-up, very softly, "may I ask what the turkey did?"

Seasons greetings to everyone

I hope you all had a reasonable festive season and my sympathies to those who may have been washed from their homes due to the floods here in the UK. We've developed webbed feet in Oxford as our city has been cut off on a couple times due to the floods. I understand for those living in South Africa - like Dianne - have been "suffering" the beautiful 30 degree sunshine and warmth. Bobby - I guess it's much the same with you "down under"??

For those who remember Dianne - she has not been at all well. Here is an extract from an email she sent me recently and with her blessing to copy and paste for you to read.

I am up at this ungodly hour because I have severe bone pain and can't lie down anymore so went to make a cuppa and chat to you for a while. On the health front ... I am now getting HSH every second week as an in-hospital patient. I have no immune system left at all and am constantly sick. I have to keep away from folk, no shopping, no outings and a low mycrobial diet. I actually feel quite despondant and down in the dumps about it because I still want to L I V E ... but this is very bad and my spirit is starting to lag. Which is so odd for me, since I am a strong person and nothing gets me down. My glass is always half full, as you know. And for three days after each treatment I am flat on my back with horrendous bone pain .... and then I start feeling better for a few days and then I get another infection and it is back again for my top up. Hence my very bad communication skills. My feet are also so painful to walk on that I lie in bed until my bladder nearly bursts and my lungs are doing backstroke before I put my aching feet onto the group to go to the loo. I am finding this very hard and tough. I try my best to stay positive but there are some bad days for me.

I have a good doctor here in PE who is doing it now who is working under the CT professor so I don't have to drive there every two weeks which is a great help. That R4000 a month just in petrol has put us into financial hot water. Patrick still can't find a job and the little I made working when I can barely puts food onto the table, let alone rent so the stress of that also makes all illnesses worse.

Other than that ... I am my normal self ... growing my own veggies and herbs in pots.

I've just had another brief email from her saying she will write in the New Year when she has some energy. I think she is able to access the site to read but unable to work out the logistics of registering and the message board as she clearly has a bit of trouble with IT and obviously her energy levels are such that it takes considerable effort even to write an email.

My news continues to be encouraging. As mentioned in my last message I was given my very first 12 month appointment and the concern over my iron and thyroid have turned out to be "normal".

My very best wishes and improved health to you all for 2013.
Love Florence

Hi Florence.

I'm glad you're so much better. But it's made me very sad to hear about Dianne. I've had some trouble with painful joints recently but nowhere near the scale of poor Dianne. I wouldn't be able to tolerate it.

So please can everyone take a little time to send out "healing thoughts", willing Dianne to get better. I hope her Guardian Angel gets his act together and helps her health-wise and financially

Happy New Year to everybody and I hope 2013 brings good news for us all, but especially Dianne.

A fond farewell

Chris

Having received an email about having a sneak preview of Macmillan's new cancer TV ad, which I watched and it really is a strikingly good ad, I realised it's over a month since I'd looked at the message forum.

Dianne is certainly going through the mill, having a really tough time, all we can do from such a distance is wish her well and hope her latest treatment does the trick and gets her fighting fit again. Dianne - if you read this, you know we're all thinking about you.

On my front, nothing much to report - got my 6-monthly checkup next month so fingers-crossed for that. Meantime, the drops I've been taking for glaucoma seem to be working really well, intra-ocular pressure has come right down, and the DVLA have agreed I'm ok to drive, though they've put me on a 3-year licence, which is fine by me. Apparently there's loads of people out there driving who really shouldn't be, whether it's eyesight or other health issues - I suppose it's tempting to keep stum and say nowt if you think you might lose your licence.

I was going to a local football match this afternoon, but the pitch is umplayable, either frozen or waterlogged so it's off... ah well, as long as I don't stay on the computer all afternoon, oh I could watch the rugby on tv.....

Best wishes to everybody!

Hi Y'all

Glad you're doing okay Frank. My brother-in-law has had bad arthritic knees for years but never told DVLC. He walks like the gorillas on Planet of the Apes but he's afraid to have an op for new knees. (He's 75 now) Been tempted to report him but my sister doesn't drive and she's very vindictive.

On 8 Dec, GP suggested a flu jab. I said no because I'd had one in the 60s and was off work next day with flu that lasted 3 weeks. GP said it's a lot better now. No it's not! Had flu ever since. It was our 2 month anniversary yesterday. I bought it a packet of paracetomol and it gave me a blocked nose.

Just as well I didn't pass my Britain's Got Talent audition. I wouldn't have been able to go to the televised one. Never mind. I'd rather be stuck indoors here watching the wind and rain outside through the window than in New York watching the 2 ft of snow outside being blown by 70 mph winds.

Sing along now..."Always look on the bright side of Life...(whistle)"

Chris