Got back from Centre Parks on Monday- had a great time. Never stopped chasing the kids, went swimming, climbing, bike riding, had a go at archery and kayaking. Energy was great and it is very true HCL does not stop you doing anything- be positive- i think of it as a long term cold or some sort of virus when being treated.
That's just the way i see this slightly annoying problem too.
Make the most of those children of yours Dave, enjoy every moment, they grow up so fast. before you know it they are off your hands and married. Can't wait for the Grankids gonna spoil then Rottern.
Keep well
....Bobby....
Just got back from a few days in Wales, yes it did rain..but the Wales wouldn't be so green without the rain..snow on the mountains too all very pretty. Had a good few days...too short of course and back to work again. Had bloods done with the GP - all hunky dory, visit with Haemo man next March, will be a year since I have seen him. Counts up slightly this time, good to see them on the up/steady and not nosediving down! Good to hear from you Jenny and Richard...totally forgot you were a Leukaemia Care advisor Richard...duh rotten memory! You might have made a better job of advising Wendy than me, especially as you also did Pento - and your brilliant 9 year remission - hey!. Still perhaps she will spot you on here now.
Anyway nothing else to report right now....
Take care all,
Nicky
PS Wendy - hows the job panning out?
And, see there is a new bloke on Rob's site in USA, - Dan - he is from the UK, but hasn't found any sites here, have pointed him in the right direction so hopefully will see him here soon!
Glad you enjoyed the rain and the snow - and some sun? - on your Welsh trip - always worth going for the warm welcome in the Welsh hillsides eh? How green were the valleys this time.... I had a trip to Anglesey a few months ago, Newborough beach and Llandwyn Island, brilliant in the sun, nice long paddle in the sea too, and took in Bangor pier on the way home after fish and chips in Menai Bridge. All in the one day too.
Great to hear your latest blod test is AOK, well done, keep it up!
Hi Wendy and Everyone else on this forum,
I am a fellow HCL person and live in Manchester. I was diagnosed in 2007 at the age of 28. It took ages for a diagnosis, so in the end once the leukaemia was confirmed, I was so sick of being stuck indoors, that I relished the opportunity to get the treatment started, it was also a relief to know exactly what was wrong with me. I had spent 3 months surfing the web coming up with alsorts of weird and wonderful diseases I could have had.
I didn't have a s rough a ride as you Wendy, but it was still unpleasant. I had cladribine over the course of a week, and developed the neutropenic fevers afterwards, I then got a really bad reaction to the prophylaxtic septrin antibiotic which was horrific, I swelled up and looked like a beetroot, so with the daily fevers it was hell.
The cladribine didn't do as good a job as hoped so I had a follow up of Rituximab for a month and this greatly improved things. So now I am back at work treating cats and dogs and my blood counts are near to normal, the platelets are being a bit stubborn and remain low.
I find that my immune system doesn't work as well as it did prior to this. Every cold I have had since the chemo has landed me in hospital.
But life goes on, the cancer is still there, but it will be a while before anything returns and my consultant is very optimistic that it will respond as well.
It is hard living with the cancer in the back of your mind. I always stress everytime I get bitten by a dog or cat! But given the rapid developments in new treatments and that these treatments seem to be becoming less toxic and traumatic to the body, I think the outlook for us all is rosy!
Looking forward to many a chat on here, its great to find fellow HCL patients
Hi Dan
Good to have you on here! I also had an awful reaction to the septrin, blew up, red rash everywhere, mind you when it had all gone and it was time to leave hospital I was skinny and looked like I had a suntan....didn't last long ...the skinny or the suntan! It seems a lot of people are getting this reaction to septrin. How low are your platelets now? I would also agree that immune system doesn't work so well, had a bite (insect...not cat or dog!) went nasty couldn't walk had to go to hospital, and things like blisters take forever to heal...but hey as you say it could be so much worse. Colds though are OK...do you have problems with it going on your chest or something?
Frank...see above is from Lancs, and we are both in touch with a man from Manchester who is recently diagnosed and is waiting for his counts to drop sufficiently for treatment....so you are not alone up there!
Anyway, all for now, keep checking in.
Take care
Nicky.
Hi Frank,
Hey, Newborough beach - thats where I walk the dogs when I am visiting! Menai Bridge - used to live there also Beaumaris. Bangor (horrible place) well thats where I found lager & lime all those years ago!
Have you been to Port Meirion....superb!
You doing OK??????
Nicky.
There is much talk about Wales so i better put my twopeneth in as i live in Penrhyn Bay near to Llandudno as it would be rude of me not to. I am actually a englishman living in Wales although i have lived here longer than in England- i am originally from Leigh in lancashire and moved to Wales when i was 18. To be honest there are lovely places in England as well as Wales and the mountain tops here in places are simillar to say the pennines or the yorkshire moors.
One thing you cannot get away with here is that it does rain a lot!
Hi Ford P,
Made it over here then.....
Let us know how your next appointment with the haemo man goes, and when you might be treated...we can give you lots of tips that you won't be given in hospital!
Stay cool!
Nicky
