Who do I tell first and how?

Hi @Birnam how did your appointment go today?

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It’s a toughie and there is no on answer as everyone’s situation is different. When I was first diagnosed with Chronic lymphocytic leukaemia (CLL) it was very early and there was a chance that I may never need treatment. I did tell my wife as soon as I returned from the hospital as it would be hard to keep from her. I was originally concerned about telling her as she suffers from anxiety but I am glad I did as there would be times when I needed her shoulder and it was best handled together. We decided to tell no one until or if treatment was needed. The reason was our three girls were either doing A levels, in the middle of university, or just finishing university and if we had told them, it really would have impacted their studies or early adult life needlessly, plus the worry for them, especially as treatment may never be needed. When treatment was needed I had 4 years to get my head around Chronic lymphocytic leukaemia (CLL) and when we told the girls apart from being the toughest thing I had ever done I had my head clear on the message and also had years to understand the disease the treatments so could answer their questions which helped them handle the tough situation, for sure there were unknowns which are the toughest thing to handle, but there were a lot more known. As I was calm and factual when I told them it was easier to handle their distress as I was already balanced.
Your situation will be unique to you, see what your consultant says in terms of when you will need treatment as that may guide your decision. My story is available on the BCUK website and also you can see me speaking about my experience with Chronic lymphocytic leukaemia (CLL) on YouTube when I have a talk for BCUK, you may find some help in listening to that. It’s tough but it gets easier.

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I went on my own to see the GP, same one that broke the news to me last week. Not a lot of info to give me at this stage so she followed up with a call to haematology dept. They believe I don’t need treatment at moment so watch and wait for now. Could be June before I get face to face meeting, staff shortages etc.

Was advised I could go private for initial consultation but nearest consultant is in Edinburgh, I am an hour & half away. Dont know how that affects NhS route going forward- I don’t have private medical cover.

I have decided to tell my wife this weekend, I can then reach out to my wider circle to get some initial advice on what I should be doing lifestyle wise. It would be useful for us both to hear that together.

Thanks for all the replies, really helps- I will look up Mel’s YouTube video too.

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H @Birnam I also do not know what difference it would make if you got a private opinion and then re-connect with the NHS route and you are also in Scotland which might have different guidelines. You might want to clarify this with your GP. Perhaps, if you were concerned you might consider this at a later date.
Personally I consider myself a very lucky girl to be on watch and wait and long may it continue.
Although kinder, more targeted to the individual treatments are rapidly coming on line.
Thanks to the funding of Blood Cancer UK and others funding and the dedicated scientists.
A face to face appointment in June/July (these things always seem to take longer than we hope for) sounds fairly usual and that will probably mean another set of blood tests for comparison.
The blood tests might take place before hand or at the hospital on the day.
Hopefully you might be given a Clinical Nurse Specialist’s contact details, if they have them in Scotland, and they can be very useful person if you have queries, concerns, symptoms etc.
I hope some of our replies might help you when you tell your wife at the weekend and that you can be a support to each other.
As to your lifestyle, and this is a very personal reply, perhaps fresh air and suitable exercise, I enjoy walking because I am nosey.
If you are suffering from fatigue you might need to get to know it and how you can adapt your lifestyle slightly.
A balanced, fairly healthy diet.
Drink in moderation and two difficult ones, I realise for people, consider stopping smoking and try to have a healthy weight for you.
Don’t go mad, gentle tweaks to lifestyle and perhaps the odd treat, is my motto.
This is all very personal and not medically based.
The main thing is that in the words of Rod Stewart 'live the life you love and love the life you live, both of you and with friends and family, they are priceless.
Please let us know how you get on and be kind to yourselves

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far better to tell everyone family first then friends after they will help you through it

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Hi @Birnam I just wondered how did your weekend go and did you tell your wife?

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Hi Erica - yes I have now told my wife and just this week my immediate family. We are all now on this journey together.

More tests done today and expect results next week. I am lucky to have a few medical people in the wider family so can access their expertise in advance of the June appointment with NHS haematology department. Got a copy of my first blood test results today - any advice how best to understand them?

Thanks for checking in with me

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Hi @Birnam. Glad that you have shared with family. Are you glad you have now?
It must be so helpful having medical people around.
@GemmaBloodCancerUK may be able to help understand your results.
Please keep posting and keep us updated :blush:

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Hello @Birnam, how are you doing? I would be happy to go through things with you if you feel that would help? If you do access a Private opinion that would not affect the NHS appointment. This would only be cancelled if you chose to go privately for further consulations, monitoring or treatment.
Hope this helps and do give us a call if you need to talk things through: Blood cancer information and support by phone and email | Blood Cancer UK. Take care Gemma

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Oh @Birnam I am so glad that you and your wife and your immediate family are all on your rollercoaster or hopefully a steam train with you.
How was it telling them and your wife in particular, I know how concerned you were?
I am glad that @GemmaBloodCancerUK has contacted you about explaining your blood tests. I have never really understood mine apart from the results that are not within the ‘normal range’
My advice with your blood test results and medical letters is to get a big file to put them in !!
Yes, definitely access the expertise of your wider family of how best to prepare yourself for your June appointment.
Be kind to yourselves and keep posting.

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