Welcome to this forum, Chris.You'll find the people here so kind and supportive. And I have a theory that this particular forum has healing powers. Hearing about others improvements certainly makes it seem like that.
I'm sure that in a few months you'll be telling us about your amazing recovery.
Did you see on the TV or internet about people recently offering passers-by "free hugs"? It would have certainly improved my well-being to have a hug from an attractive young woman. But it made me think - why can't they offer that from volunteers in chemo waiting rooms?
I remember talking to a young frightened woman there who was reading a booklet explaining her forthcoming mastectomy. I'm sure she'd have appreciated a hug and a comforting word but probably not from a 64 y o male stranger so I couldn't offer.
Maybe this is why we have to go through these illnesses. After recovery we can offer support to new sufferers and say "I understand. I've been there." The most enthusiastic fund-raisers are often those who've experienced cancer themselves or through a loved one.
Thanks for welcome Yorick. I have already found the forum to be very helpful and had some great messages of support. It does help knowing that there are people out there who have gone through what I am now who are happy to share their experiences with new starters like myself.
I agree that sometimes all you want is a hug and kind word. I'm lucky to have a fantastic partner who has been a tower of strength to me. She always seems to know when I need a touch of reassurance.
Unfortunately I have been re-admitted to hospital as my temperature spiked and I was sick last night. Feels very frustrating, but ultimately is the best course of action for me. I do, however, look forward to the day I can share the story of my recovery and start helping to reassure other new posters on here.
Sorry you've been re-admitted. Unfortunately the fevers come with the territory. Some antibiotics and you'll be on your way to recovery! Try (I am definately not always able to) be patient and bear in mind a few more fevers may be around the corner. Its just how it rolls. But you get a round of antibiotics and its gets sorted. I know its no fun and hospital isn't home. But try to accept it rather than fight it. I just mean accept it and dont let it hack you off - otherwise you could go loopy. Your neutophils are very low. You'll start turning a corner and you'll certainly feel a lot better soon.
The only thing not to accept is rubbishy hospital food! You may not always feel like eating, especially if its not too good. Ask your good lady to bring a nice sandwich or some fruit with her next hug. The better you look after yourself the quicker you'll get better. And you will.
Take care and I hope the night shift nurses are a giggle - I often spent a sleepless evening on the nurses station. Their banter is always the best.
Thanks for your message. It came at just the right time and with the right advice. I now grasp how quickly things can change when you are neutrapenic and have actually started to understand that I have hcl and it's implications. I've just been told I can go out between antibiotics, so going to head home for a few hours.
You are right about the food. And my other half is great for bringing me stuff in. I also have food intolerances, but the hospital caterers are struggling to grasp that. Am gradually educating them though!
The night shift nurses are great. I'd hardly slept the last two nights and then had two units of blood, one lot of antibiotics and various rounds of obs by midnight last night. They then left me as long as they possibly could before next round. It's little things like that which help.
Hang in there my son, it looks like you are getting the hang of this HCL life. The facts as told to me are. This is THE one to get if you have to have Leukaemia. 80% of people will go straight into remission which can last years and years if it does come back hit it again and the remission times can be a lot longer (or not but lets look on the bright side for once). Of the other 20% there are other drugs and new stuff coming on line so even thats not to bad. We will live a normal or near normal life span so dont go blowing all your retirement money(well what the hell i went out and brought a 3.5 litre broom broom car when i went into remission but one has to celebrate once in awhile aye!) There is lots of light at the end of the tunnel, my friend, and its not very far away.
I agree about hospital food. I was in a couple of days in Feb with a kidney stone. They didn't know if I'd need an op so the first day or 2 I was nil by mouth. Only when I eventually had the food I realised the nil by mouth was a blessing. There was a tv documentary a while later saying the contractors get £4 a day to supply a patients food.
So I contacted Asda and pointed out that their "5 for £4" snacks are similar to the hospital food but better quality. And suggested they put in for the contract. Even if it didn't make much profit, it would be a tremendous advertising coup. I'm still awaiting a reply.
Glad you've got a partner for support. It's a bit of a b****r when you live on your own.
I've got my next specialist appointment in June. They'll have decided by then what to do about the remaining HCL in my bones. I've had a blocked nose for 2 months now which is turning into a cold
Poor old Clive James will probably be blogging somewhere on the site soon.
Oh well, how about a silly joke to cheer us up? Two birds perched on a telephone wire. One says to his friend, "Don't those long words make your feet tickle!"
Keep the jokes coming! I'm not good at jokes because I can never remember them.
I too have my next 6 monthly blood test 10/6/11 and Haematologist appointment 17/6/11. I know it's stupid, but It seems like we wish our lives away being impatient to get to the next 6 monthly blood test. you also spoke about getting a cold and having a blocked nose for the past 2 months. I have had a cold now for 9 weeks although, it does appear to be easing off now with just the runny nose & a niusance cough. When I was first diagnosed in April 2009, they said I had Myelofibrosis, then after a BMB the diagnosis was changed & confirmed as HCL.
When you were first diagnosed with Mantle Cell Lymphoma, did they start to treat you for that and if so, what treatment did they give you? In regard to HCL where you were only diagnosed in late 2010, have you been in remission as yet or is the HCL in your marrow still Hairies that have not died off from the original Chemo?. Six months after my Cladribine, some of the Hairies still had not died so they decided to give me a Tumour Vaccine (Mabthera or proper name is Rituxan I think). The Mabthera was suppose to target just the Hairies and tell them to get on their way. Then six months after that I was declared in remission however, I still don't know what if any percentage of Hairies that may remain in my marrow. That is going to be a question this time around on 17/6/11.
I hope all goes well with your next test.
PS: Clive James certainly has a few other problems as well i.e. Lung disease and failing Kidneys as well as CLL.
I haven't posted anything for a few weeks, but have been following all the posts, and can but wish the Newbies all the best now they're fully-fledged members of the Hairy Club and this Forum. And reiterate what others have said... there really is light at the end of this tunnel, so hang on in there, and feel free to ask anything you like, you're guaranteed a helpful and supportive response on here.
Steve - you mentioned Clive James, I saw him on tv earlier this year, had heard he wasn't well but he sure gave a virtuoso performance on the gogglebox, I guess you never lose the ability to entertain... a pity I've never had it though!
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You asked for a joke, so here goes.... and like you, I can never remember them... COURTESY OF TOMMY COOPER...
A man goes to the doctor, with a strawberry growing out of his head. Doc says "I'll give you some cream to put on it."
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This guy goes into the doctor's and says. "Doc, I've got a cricket ball stuck up my backside."
The Doc says: "How's that?"
The guy replied: "Don't you start."
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20. Police arrested two kids yesterday, one was drinking battery acid, and the other was eating fireworks.
They charged one and let the other one off.
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A man walked into the doctors, he said, "I've hurt my arm in several places"
