Oh, @Somerset, I’ve found someone else who made a graph of their blood tests. I was diagnosed in 2003 and in the end my sellotaped, extended graph became like a toilet roll so I joined the 21st century and now plot it on line. I was diagnosed at 53yrs old and it has been interesting to hear the number of us diagnosed in our 50’s. I still get anxious before, during and after all medical appointments, do you? Thanks for your supportive, informative email.
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Hi I was 58 when diagnosed with CLL at Christmas 18 months ago . I am on watch and wait and I am well .It was a shock as I have never been ill. I have learnt to deal with it by living my life as full as i can. There is a lot of support out there and forums like this one have helped me a great deal. Take care and welcome to CLL community
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A great big welcome @Telephonie, I also had also had a good half century of very good health and hadn’t had a day off sick in nearly 30 years. As you say to @JackieSouthWales I think this is the best time to be looking for information and support on line, especially thanks to Blood Cancer UK. There was very little information available when I was diagnosed and I did not find any support groups. I felt in my fearful, isolated bubble, I thought I was the only person in the world in my situation and I could not explain to others what I did not understand myself. How are you getting on and feeling in isolation? Take care.
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@Telephonie welcome! How are you?
we’re so happy to have you join us, and thank you so much for your support to Jackie. It sounds like understandably your diagnosis was a big shock, it’s so encouraging to hear you be so open and honest about your experiences- and to hear what helped you.
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@JackieSouthWales. Jackie, just to add my ‘2 pennyworth’ - hopefully of reassurance. Like others who have posted I was diagnosed over a decade ago in my late 50s. As you say, a bit of a shock at first because you don’t know what you don’t know! But here I am, little progression of the disease (in fact my Lymphocytes have been on a downward trend for the last 5 years) no treatment, little to no effect on my life other than 6 monthly blood tests.
I would highlight 3 things that have helped me; track my own blood test numbers on a spreadsheet, educating myself on the condition and making use of support forums such as this.
Some of these lessons I have read across from another chronic condition I have; Addisons, where watching the numbers and using the relevant support forum has been very useful.
On blood test numbers I find it really useful to use ‘Patient Access’ to view all my tests soon after they are posted by the surgery and the associated graphical analysis. Though I keep my own graphs too as I end up have having tests for my 2 conditions in 2 NHS different trusts (the so called National Health Service unable to put figures in a single patient related database!)
Its vital to monitor things yourself and ask questions if health professionals don’t seem to pick up on changes. My GP is good but like all GPs very busy. And if you can sustain a bit of a dialogue with the specialist nurse in your consultants department all they better. They can often be a point of entry to specialist advice or appointments without bothering the GP.
Go well and don’t worry too much!
David
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Welcome to the forum David, and thank you for your reassuring advice. You make a very important point about taking ownership of your medical information. Having worked in a GP surgery for a couple of years I remember how many blood test results used to be returned daily! There are more reliable websites to access information now than 13 years ago when I was having treatment for blood cancer too. I hope you find the forum useful and supportive. Stay safe and well
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Hi David, a great big welcome to our community forum. You raise some very valid points. Yes, I was told to take ownership of my condition and blood test results and it has helped me take some control back in my mind. It also allows me to see trends and anomalies. I have now got much braver and write down all my fears, symptoms, questions and practicalities and even ask that follow up questions as well. Yes, all GP’s are very busy, but mine has been brilliant. I am very lucky. Yes, go well, David.
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I’m quite obsessive about numbers so always keep a record of my various blood counts at my 12 week reviews. I recently found quite a good app for logging these as well on my phone. It’s free and called “My Blood Counts”. In addition to recording the data it can also display graphs which show any trends quite nicely and highlights if they are in the normal range or not.
All the best, Peter
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Thanks Peter for your handy hint for logging your blood tests, how are you doing and feeling at the moment? Take care.
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Thanks Erica, I’m doing well at the moment. I’ve been very busy with work since the lockdown as we had to move to doing things using remote systems such as Teams. I finally left the house last week for the first time since the shielding was relaxed which was quite weird. How are you keeping?
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Weird but good? I still haven’t gone far!
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I am keeping well and I have not left our flat yet and I don’t know how I will feel when I do. Fresh air and the wind and sun on my face. Social distancing hadn’t been invented when we started shielding. I think as @Nichola75 says ‘weird but good’ might be a good description. We live opposite a small park and this weekend I can hear children happily playing and the traffic seems to be reverting to ‘normal’. I think it will be a ‘new normal’ for us. I will venture out when medical opinion says it is right for me. I kinda want to get to the 30 June and get my ‘badge of honour’. Daft isn’t it.
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Hi Nichola
I found it a bit overwhelming at first, particularly coming up to corners as I was worried about bumping into people coming from the other side. After about 20 minutes I managed to relax a bit and enjoy it more. People are very good about keeping distance so I generally feel safe. I also had my first hospital appointment since lockdown this week as well as the previous ones in April and May were carried out over the phone. Again that went well although very strict distancing was enforced.
All the best,
Peter
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Hi Erica
While it’s good getting out for exercise it will be a while before they let shielded people like us into wider circulation. Updated shielding letter I received last week advised it was safe to go out for exercise once a day and in a way was encouraging people to do that. It was clear that other than exercise the shielding measures should continue so it may be a while yet before we can get into wider circulation let alone go shopping etc.
All the best,
Peter
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Hi Peter, I am glad you have received an updated shielding letter setting out your shielding position clearly. I spoke to one of my medical team last week. Please keep letting us know how you are, stay safe
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Thanks Erica, I will do.
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Well, like @Erica I have not left home and only ventured into the garden, and don’t see myself venturing further for some time. Peter, your comment about approaching corners brought home to me that due to my hearing loss I do not hear people approaching from behind, nor bicycle bells when I used to walk along the canal near home. As this would most likely be my walk, and because of social distancing my daughter has also said that I should not do that walk.
I am wondering if I will have the luxury of an updated shielding letter/text as I do not fall into the listed groups, and it was only when i spoke with my GP that he said yes, he has flagged it on my notes and he sent me a letter. Apart from a leaflet from our local council I have received nothing.
As I had to retire early, and my husband has been doing shopping etc I am just having to go with my instincts. Mind you, after returning from my spell in hospital when I shared HDU with the first Covid patients my neighbour commented that I must be very hardy having come through as much as I have…reckon I must have used most of my 9 lives by now
Have a good week everyone
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I feel overwhelmed just thinking about it! Think I just need to do it kind of spur of the
moment. Setting a time puts to much pressure on! I have a PET scan at the end of July so will have to venture out for that. Like you said, people tend to social distance well. I’m really glad you enjoyed it! Hope the
Next one is even better!
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I’m with you on wanting to get my badge x
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It had better be a great big shiny badge !!!
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