I have been somewhat quiet recently in my communications for which I apologise.
Anyway, I've been to Germany and included in my visit was a day in Hannover and three days in Berlin. Have I mentioned this before?
Well, yesterday was the Oxford Half Marathon and my friend did very well indeed. She completed the run in 1 hour 50 minutes!! I marshalled at both the start and finish lines which was quite exciting but disapointed I wasn't able to join the runners. The weather was beautiful, sunny but chilly. I am fundraising for leukaemia so should any of you wish to donate, my page is www.justgiving.com/florence-dudley-hughes.
I have been fighting the mother of all colds all last week and I expect it got the better of me yesterday 'cos when I came home I just flaked out and today haven't got dressed - been a jammies and gown day sitting in my chair by the fire! I regard myself as very fortunate as this is the first cold or whatever since my diagnosis in 2009! Even before that I rarely had colds or flu. On Saturday I'm due to have my flu jab so hope this cold thing I have is mostly gone by then.
Meanwhile, keep well and smiling. Will be in touch soon.
Well I had my treatment the last week in august which wasn't too bad to be honest, then spent a week in hospital after that! I have no further stays in hospital and my bloods were very slow to improve but went for a check up and they are near normal the doctor said! It wasn't my normal docotor but he was very nice!
I wanted to ask everyone if they suffer/suffered from shortness of breath? I have had this for a long time and hasn't eased any since treatment, the docotor sent me for a chest xray today but he sounded it and said it was clear! he said there was a chance I had a under active thyroid!!!
to be honest this past 2/3 weeks my mood has been very low with the tiredness etc and I have gained 15 pound in weigh probably because I am not eating great! I am trying to plod along. I get the 3 kids up in the morning and out to school and call into my coffee shop every morning and have been doing a bit of baking but I really can not be bothered doing anything to tell you the truth!
Does anyone else feel like this?? should i just be pulling my socks up and get back to work? would the tiredness go if i did that? I get absolutely no help from any family members with anything only my husband and it feels like people think because I am out and about and not lying in a hopsital bed that everything is ok and I am not sick.
Great news that your blood levels have returned to normal after your chemo.
I think we've all felt low on energy at some time after chemo. And I know the feeling that because you look ok, everyone thinks you're 100% and expect you to be rushing round as usual. What they don't see is your inner feelings about what you've been through and how things might turn out in the future, whether the hairy cells might return, or whatever.
Good that your hubby helps a lot - maybe other friends and family members are in denial? Maybe it's their way of coping, however weak that might sound.
I'd be worn out with sorting three young kids out in the morning, never mind trying to get to work, so try not to be too hard on yourself - it's only a couple of months since chemo, and it sounds like you are recovering really well, give it time, and you'll get back to normal activity levels. If you'd like to talk to someone, you could always try Leukaemia Care's 24/7 phone line, I'm sure they'll be helpful, sympathetic and understanding.
I'm typing this since you are by no means the first to end up with an underactive thyroid! Our daughter has, too, they think it's all the chemo, especially since her donor transplant.
Is your doctor going to do a T4 blood test to find out? The results take a couple of weeks usually, but it might help if you ask, the gain in weight, reluctance to get up in the morning, lack of energy (though you do chase around after the family, that would wear out many of us!) and do check if your hair looks and feels the same as it should, all point that way.....
Frank - as only to be expected you are just so wonderful with your words of wisdom, encouragement and comfort. Really you are the patriarch of us all!!
Anyway, seems as though this site has been somewhat quiet and I wasn't sure why I wasn't receiving any notifications - now I know!
Hope you are all in reasonable health. I've really been under the weather hence my silence as I just wasn't up to even replying to many emails and needless to say now trying to catch up. I'm still not through the woods but getting there. Just hoping those hairy monsters aren't back but till know on 6 December what my counts are - that's my next hospital appointment.
Sorry to hear you've not been well, hope your fundraising run did ok, I know you couldn't actually do the run yourself. Heck, thta was what, back in October?
I've just found out I had to re-register with Macmillan for some weird reason, is that why nobody's been posting for over a month? Crazy, like why don't they send out emails telling us about the change?
Best wishes for your tests early-December, I'm lucky as they've extended me from 3 months to the usual 6 month checks.again. But it seems I have glaucoma, off for an exam next week, oh and just had the delightful self-administered bowel cancer screening test..... it cracks me up to think of all those samples winging their way round the post system!
I wasn’t sure what had happened either, and thought I’d been
excommunicated from the group! My news
is that the abdominal pain that I’ve had since Cladribine in 2009, and which
got worse after Pentostatin in 2011, is much improved with Ranitidine 150mg
twice a day.
There’s not much improvement in my blood counts, but I’m
still in remission, so I’m thankful for that.
It would be good to hear how everyone else is doing.
Just an update. I've been continuing my home remedies for the medical problems I've got that are not HCL although I believe they started when my antibodies were low after chemo The shoulder joint pains have gone which all the doctors said must be arthritis. But I have pains in my hip joint areas now which again only hurt when I lay on them in bed.
I'm having probiotics every day and yoghurt which seem to help. Both of these fight fungal infections which I believe I have. Then late evening I eat some chocolate to activate the fungi and then drink a mugful of bicarb to kill them. And I've had some improvement. I can now walk a mile without being totally exhausted..
I'm not telling family or friends yet, but I auditioned for Brirains Got Talent. The initial one is in front of a producer but if chosen, the next step is the one in front of Simon Cowell. If I haven't heard by Feb, I've failed. But I think successful acts hear in December. If I could win £250,000, I could afford to see a private doctor who might do the right tests if I'm paying for them. But not much chance of that. Given the choice between a 65 y o comedian or boy dancers who take their shirts off, who will young women vote for?
Anyway, at least I finally had the strength to do the train journey. Although I think I'll need a young carer to go with me on future train journeys to help me understand the ticket machines. I got the outward ticket to Prince Regent station on DLR at my local station. Coming back, passers-by helped me get my DLR ticket to Woolwich Arsenal via Canning Town. But at Woolwich, I got my own ticket to Chatham. It was more expensive because it used the Hi-speed link. A train employee expained I had to go back to Canning Town and change for a Stratford International train There I'd get the hi-speed train home. My brain doesn't work so well these days.
Considering a couple of years back I never thought I'd see 2013, each morning when I wake up I think "Hey, I've got another 24 hour extension!"
I would be careful with this self medication lark you are into i have been having probs with my right knee for the past couple of months i have been to the docs. Normal thing pain killers so a friend of mine told me about a drug that he tried for his tennis elbow called cats claw. I looked it up on the web and found that it is used for stimulating the immune system and positive results for arthritis. so i have been taking the proscribed amount for a month and this morning awoke to find a lump under my right arm. Opps stimulating the immune system is not a good idea for HCL sufferers. So back to the doctors we go.
Best of luck with your comedy act you will blow them away BUT against an 18 year old no talent bimbo screeching into a microphone with her skirt around her bum and wearing the least amount of clothes that she can on TV what are the chances !! but as you say you have to be init to win it.
Thanks Bobby for your kind words and advice. The trouble is when specialists don't know what's wrong and refer you back to your GP, you have to do your own research. I think I have bursitis caused by fungal infection but it's rare. So doctors can't justify the expense of a confirmatory test. The only way to kill a bad fungal infection is an antibiotic fed intravenously, which is made from a probiotic. So I'm taking probiotics and yoghurts which also kill fungus. Bicarb reduces the stomach acid ( and too much can raise blood pressure) So I have my meal at lunchtime and late evening I put some bicarb up my blocked nose and drink at the most a mugful. It's stopped the pains in my shoulders but now it's my hips.
The rash on my feet my GP gave me some moisturiser for. Not made any difference. Now I have a different rash on my head so the pharmacist advised an anti-fungal shampoo. The jury's still out on that one as it works for 2 or 3 days, then forms scabs that peel off.
Re Britain's Got Talent... I did hear a story of a topless female ventriloquist who asked the judges. "Well. did you see my lips move?"
