My real name is not Hamish_McTavish_III as you may have guessed! That is the pet name we have for one of our lovely 10 year old Flatcoated Retrievers. No doubt a photo will appear at the top of my profile at some point in the future.
Many years ago as a healthy, fit young man of 25 I was informed that my new diagnosis of Ankylosing Spondylitis would mean I would be in a wheelchair by the time I was 40. Well, here I am at 72 and still not in a wheelchair. Ok, so I use a mobility scooter frequently nowadays but I still call that a win! I was determined my AS would not prevent me enjoying and living life to the full which I did by the bucket loads.After 40+ years on NSAID tablets I was offered monthly biologic therapy injections that have given me a new lease of life these past two years.
However, It looks like I have a new area of interest to try and conquer now as I have been diagnosed with CLL six months ago. What an absolute terrifying shock it was to hear those words in a telephone consultation during 'Lockdown' here in the UK. Currently I am at the 'Watch and Wait' level but have no idea of what the future holds on my journey with CLL. I know nothing about the terminology of this condition and have a million and one questions about so many aspects of this condition.
I look forward to reading, sharing, questioning, answering, thinking, etc., along with you so that I can make the best job I can of making sure this condition does not beat me into submission too quickly.
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Hi, Hamish.. I am also not ChristyAnne…! Isn’t this fun? Secret identities… I am even sporting my superhero mask…
I hate to say ‘welcome’. I’m sure you’d rather not be here! Congrats on getting to where you are in life relatively unscathed, and long may that be the case.
There are lots of very bright and well-informed people here, who are equally generous with sharing their knowledge, so you’ll soon catch on.
I had the thrilling experience of watching a Blood Cancer UK webinar a couple of days ago… ‘Ask The Experts’, and what thrilled me was that I already knew everything they said! It’s very comforting to have confirmed that everything you think you know is true! It’s all to the credit of the wonderful folks here, and in other communities, but mainly here.
Thanks for the reply Christie. Your superpower is obviously one that enables you to be in more than one place at once and to have multiple differing appearances all at once! I was at the shop earlier and saw your mask all over the place. Very clever lady.....😂
Looking through the posts so far, it looks as if I have a lot to learn but in order to be able to manage something you need to understand how and why it is hell bent on attacking you in the first place. That was how I managed my AS successfully over the years and hopefully the same approach will help me here.
Welcome Hamish. I have been a member for a few years and had to dumb down a lot of the technical stuff with cll just for me to understand it. Here is a link to an index to some of my efforts to dumb topics down. Since you say you have no knowledge of all the terminology and apparently want to be more informed, these articles might help:
Thanks Jeff, much appreciated. I will have a look through that link and try to make an inroad in understanding at least some of it. At least this time around it should be much easier to find information than it was back in the 70's when I had my AS diagnosis. You really were on your own back then. Look forward to some recipes as well by the sound of it.
Welcome Hamish into this amazing site. You will get educated well and as fast as you are willing to. With your warrior attitude and a great sense of humour you will do well.
Dana, Thank you so much for your welcome to this group. Every post I have read so far is very positive about how useful and helpful it is. I am pleased to have found it and look forward to the learning process yet there is the bit of me that wants to put my fingers in my ears and sing 'Lalala'. A fairly common reaction I expect at the beginning. Your message means a lot so thank you again.
Welcome! I am Ghounds because of...my rescue Greyhounds. Original, no. You couldn't be in a better place to find all the information you need. No question is ever too small and nobody will make you feel silly for asking whatever you need to. The pinned posts are excellent to give you an overview.
Thank you Ghounds for the welcome. Obviously anther dog lover and why not? I have a follow up telephone appointment with my Consultant towards the end of August and I think my first post in a few days will be along the lines of the best questions to ask. In the meantime, thank you again for your most welcome reply.
Thank you for your message Jacksc06. It does feel like a family already. Some support groups I have looked at in the past are not good places to be for one reason or another. My questions will come in the near future but joining this group is my first step in admitting to myself that it is real and I need to accept and confront the situation if I am to be able to manage it successfully. I look forward to hearing from you again.
Hi and Kia ora from NZ. Glad you've found this global group. It's a mine of information and support, especially while you're just starting on the ''finding out about CLL'' bit.I've lived with CLL for around 20 years and counting; like you with your AS I was determined to go on with my life, so continued paid employment for many years .
What a wonderful welcome 'Kia ora' I like that alot, so thank you very much. With 20 years under you belt so far you will be giving hope to so many people. May you have many many more years. I continued full time work as well, until I was 63, as it gave me a reason to get up and keep the routine going. Swimming every day for an hour when I was in my 20's and 30's really helped in the long run.
Hi Hamish. I was diagnosed with Bowel cancer in 2006 and at the time there was no support group equivalent to this one I could find. However my oncology team were great and kept me well informed on the treatment. I am clear of that now, but was diagnosed with CLL in 2015 and have been on W&W since then. There is a big difference in attitude by the haematology team and they have been much less informative. Coupled with the effective shut down on face to face appointments due to covid (1 phone call a year!) it would have been a lot more difficult to face up to CLL if it wasn’t for this group. I am finding well thought out answers to my questions here (and answers to a few questions I hadn’t thought about) which has more than made up for lack of “official” consultations. I don’t contribute much, but read a lot – well worth the time and reduces the worry factor by a huge amount.
Hello Ian, Thank you very much for your message. I am so pleased to hear you are clear of the Bowel cancer now. That is great news.In the same week that I found about my CLL diagnosis I had a letter from the Bowel cancer screening system here in the UK to say I had a positive result. Thankfully, after a check up at the hospital it was found to be a false result. Phew!
I am going through a very low energy phase at the moment so I shall start my reading properly in the next few days. At the moment I am only able to face reading for a short while before I frighten myself to death and need to bury my head in the sand again for a few hours. I shall get there though with the support of many kind members like yourself.
Looking forward to your namesake's photo. Lexie was my Golden Retriever's name but I now have North, a Pyrenean Mountain Dog, the puppy photo by my name. This is such a great site and it's fantastic that you found it. Makes the CLL ride so much smoother.
I am W&W since 2015 so not as long as most on here which means I am still learning. I had carefully built a team of specialists during this time but this past year during the covid shutdown I lost half of them. I suppose some retired but most moved to a different hospital system for whatever reason. It seems like I spend a lot of time choosing new specialists which I find aggravating about the whole process, but it could be worse, at least there are many to chose from.
Hi Lexie, Lovely to hear from you and I promise to put up a photo of Hamish and Sophie in the next few days. Both are Flatcoated Retrievers. We had a Golden (Warwick) as well but lost him a few years back now. North looks lovely too.I don't know any of my CLL Team yet as I haven't met any of them apart from the Consultant and due to Covid that was via the telephone. I have another telephone consultation with him in a few weeks time and I want to use it to ask a few questions. However, as my hearing is not too good I find it very difficult to have a proper conversation with him as I can't read his lips via the 'phone! I shall ask for a one-to-one meeting with him I think if the Covid rules allow. I don't see why not as I still have two 1-2-1's with my Rheumatologist and Specialist Nurse each year. It is so frustrating when you collect a really good support team around you and then they go and move on somewhere else isn't it?
Anyway, thank you for your reply, it is much appreciated.
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