UK CLL Forum, UKCLLFORUM

Another newbie - and a bit of an interloper

Topic Made On: Feb 22, 2012 11:43pm
New Age Straggler

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hi, I'm in Australia, but originally from England, so hope you don't mind me tagging along. This forum is the first place I have found that gives practical advice and I have been so relieved to read about others' symptoms in the research papers. At last I know I'm 'normal.'
I am 69 in May and got CLL for my 60th birthday - Went to GP and asked for a full health check because I was 60, was called back for more tests and early stage CLL was diagnosis. My disease has been indolent (which suits me, because I'm a bit indolent by nature).
However, despite the humour I have found living with CLL very difficult to deal with mentally. I have been on regular 6 monthly visits with a specialist and apart from the blood test results little happens. When I asked about symptoms I was given a computer printout explanation of CLL which contained treatment phases and little else.
My GP has little knowledge of the disease and can give no advice on symptoms either. Nerves was a recent diagnosis of a complain about aching limbs.
A couple of years ago I rang the Australian Leukaemia Foundation helpline because I was due an MRI scan and was worried about claustrophobia - it was suggested that I close my eyes and was there anything else they could help me with? I haven't rung again.
With Cll being a long term disease with next to no visible symptoms I often feel I'm making a fuss about nothing because I don't have a real illness like Leukaemia. As you said in your introduction the British tend to be private people and I can relate to that.
For the past couple of years (summer is worse) I seem to have more aches and pains and since Christmas there has been a lot of dashing about to help out with sick grandchildren. The following day, I am totally weary and my legs ache.
This wasn't supposed to be a moaning session, but its been so good to say all the things that one can't say to friends and family.
Sunshine Jan




Replied On: Feb 23, 2012 08:44am
Pixie

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Gender: Female
Posts: 5
Hi Sunshine Jan, I am a bit like you 71 years old and diagnosed about 6 years ago and I know nothing! I keep going like you for blood tests and back again, however next appointment in about three weeks I intend to ask lots more questions.
I am so glad (if thats the right thing to say) to hear someone else who has so many aches and pains. Legs, ribs arms, some days I just want to hibernate. There are many people on this site who are very clued up, I am not and dontpretend to understand a lot of what they are all talking about but I have been given some indicators to ask about by one of the members.Goodluck Heather



Replied On: Feb 23, 2012 10:13am
Chonette

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Posts: 24
Jan,
There are several people from Australia on the International CLL support forums and list. www.cllforum.com one of the creators and moderators comes from Australia, worth joining in and get yourself familiar with what other people go through in other parts of the world. Also www.cllcfriends.com is another good forum.

CLL is an international condition and you will find meeting those people helps with the emotional side of things.

Other international places to visit are the http://cll.acor.org/help.htm this is the first list created many years ago and most of the other list and forums are spin off this one.
http://health.groups.yahoo.com/group/CLLSLL/messages This Yahoo list is mainly educational and have a CLL consultant on the list that sometimes post.

We also have a support group in the UK www.cllsupport.org.uk but do not have an on line forum, we organize patient meetings and other things, there are some organizations in the UK that have on line forums, but as you live in Australia I think the international ones would put you in touch with others living in Australia.

I got CLL friends in New Zealand and other parts of the world that come to the UK once a year and we meet for lunch or tea.

I am 67 and was diagnosed 10 years ago, I have been through most things but have tried my best to have a normal life like any one else, sometimes it is quite ironic that those friend that are healthy, seem to have more cold than me.

I hope this helps, all the best
Chonette



Replied On: Feb 23, 2012 10:32am
kestrel

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Posts: 41
Hi.Jan so you've found the CLL forum.I truly believe its been a mine of info and theres someone who's always willing to help with advice with understanding.I was diagnosed some 10,years ago and like you I wanted info on this illness,and got no real help from my doctor or the hospital? I then found this site and a world of info was there for me ask,and all the questions we all have when we get the cll news I too have the aching body,but last year I had the FCR treatment,and soon the dreadful tired feeling I was living with started to go and I had some energy returning and life seems somewhat a little sweeter again the pains throughout the body have reduced but not gone,but I'm not sure if thats due to the years of CLL or just age catching me up.All I can advise is that if you have any questions or concerns just ask someone here will have had it done it or been there. wish you well.Lee



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