Hi @Rachel1950 a great big welcome to our forum and thanks for your post as you say with a very rare condition like LGLL it is difficult to find others with the condition.
I have CLL, I was also born in 1950, and I was diagnosed in 2003.
I also had to give up what I found a stressful job, avoid situations where I might catch infections and I manage my energy and fatigue.
It must be tough for you caring for your husband with Parkinson’s, not a lot of time to look after yourself.
I have found this forum a great support because I can post what it is really like to be me and I know others will understand, no matter which blood cancers or their situations.
If you would like to talk to someone the you can contact the wonderful support team on 0808 2080 888
Mondays: 10am-7pm
Tuesdays-Fridays: 10am-4pm
Saturday, Sundays and Bank Holidays: 10am-1pm
or via email at support@bloodcancer.org.uk
How are you coping emotionally, physically and practically?
Hi @Rachel1950 and thank you for your post. It affirmed what I already have begun to realise; that I have to make a change from stressful job of 24/7 6 days a week into something less stressful and gain a better life balance in order to manage my health wellbeing. I am making changes bit by bit and with that comes a new set of hospitals and doctors… of course can’t say if they know LGLL but at least I have energy to fought for what I need. Take care, Maria
Hello
I have realised over the years that it is important to keep your own records of blood tests and monitor it yourself as many GPs don’t understand the results. For instance after a recent blood test a GP told me I was not immune suppressed! My main problem has always been skin infections.By giving up work I was able to keep away from people with germs & keep fairly well. I have antibiotics at home & know when I need to take them. Oddly the recent Covid vaccine has increased my neutrophil count?
I am now at the point where I have a blood test every 3 months & only see the consultant once a year. With care you will be able to keep well, but I do have fatigue so have to pace myself, so take care. By the way I was initially treated for ME until my blood results were eventually noticed.
Good luck . Rachel