Any Heamatologists on here? Just received a Chronic Lymphocyte Leukaemia Diagnosis and can’t take it all in…..

[DutifulDaughterWifeMother]

I received the diagnosis from my GP on Monday who said that the blood doctor reviewed my blood test results and is saying that I am meeting the threshold and so have early onset CLL. I am waiting for the Heamatologists secretary to call me for an appointment but I just can’t process it. Please can somebody talk to me I feel like I am losing my mind! 😥

i can’t help directly with CLL but my husband was diagnosed in October with AML which is acute and fast moving.

You can do this. You can do hard things and you will acclimatise to this news.

The blood cancer website has a wonderful forum with lots of posters across the various blood cancers. You will be able to get immediate help from other people diagnosed, care givers and those qualified to support.

Big hugs to you.

I’m not a haematologist sorry, but my BIL was diagnosed with CLL 13 years ago at the age of 45. He was very poorly at the time of diagnosis, but had 5 rounds of chemotherapy that put him into remission and so far it hasn’t returned. His consultant is actually pretty relaxed about it and has said he fully expects him to have a normal life expectancy

@Villagelady Thank you for your reply. I have been looking at the site but I am unable to take much info in. I suppose I am still processing.

Sorry to hear about your husband, how is he doing? How have you coped?

I’m more concerned about how my husband is dealing with it more than anything so if you have any advice I would appreciate it. He is trying to be strong but I know it’s hit him hard.

@Pushmepullyou That is reassuring to know thank you.

I had ovarian cancer ten years ago, so I know how you must be reeling from this diagnosis. These intense feelings will pass, as you adjust to the shock. You will cope as we find an inner strength we didn’t know we had. Cancer these days can be treatable, as treatments are improving all the time. To start with I kept busy and we did lots of nice things. Simple things like going out for coffees and cake and walks at the park. Things will get easier, I promise you. 💐

i am a cancer nurse, previously in haem. I know any diagnosis is a shock but try to consider it like a diabetes or another chronic condition. It needs monitoring and perhaps treatment and you will need to learn to live with it but treatment is often quite targeted, without the risk and burden of traditional chemos. I don’t mean to minimise but rather offer some reassurance. Do you know where you will be referred to?

CLL is called a 'good one' as you can live with it for many years, and doesn't always required much more than mo storing for many years- but I always found that a bit insensitive as no cancer diagnosis is 'good' best of luck with your haematology appointment.

It was a total shock. He was extremely healthy, fit, full of energy and then just very pale for a period of a couple of weeks. We were lucky I think that we had a very quick diagnosis. After that, it is the opposite I understand from CLL - he couldn’t leave hospital at all and had to start very strong chemo within a couple of days. Adrenaline carried me for a little while but I found this disappeared after taking care of things like our insurance, health insurances etc.

Things that have helped me:

• Talking to people about it including at the hospital. My husbands oncology team will check in and there are also Macmillan / Maggies available for support.
• Ask for help from family and friends. Re-jigged some of our habits to make it easier over the next few months.
• Making time for myself - exercise, rest, extra sleep, hydration so that I could be there and still be useful for my husband.

it’s been 11 weeks since diagnosis for us and we’ve come so far when I look back to the initial diagnosis in the room in A&E. If you don’t feel like posting on the forum, your husband might. There are experienced posters on there who have had CLL for DECADES who will help with the practical, emotional and physical things to think about for you both. Please also feel free to message me directly.

The initial shock was numbing for us. Life does continue and we tried to look at the positive aspects - a chance to take the medicine and be better, extra time with each other. There have been hard moments, and shit moments - particularly early on but there have not been shit days or weeks and this has been a real reassurance for me.

Treatments for blood cancers have improved enormously in recent decades.

DON'T GOOGLE

There is still a lot of older information hanging round on the internet, and it won't help if you trip over that.

If you want to find out more, stick to Blood Cancer UK, Leukaemia Care UK, or CRUK

@Manyandyoucanwalkover ❤️

@Readnotscroll I have private medical insurance through my husbands work so am seeing a heamatologist next week. I am already medically retired as I have fibromyalgia which has been debilitating in itself. Not where I thought I would find myself at 48……

@SD1978 Thats exactly what I am finding, it’s cancer! Thank you x

@nether At first I just put CLL in the search bar & I found it quite overwhelming so I have now only been reading on Leukaemia Care.

Google is a dangerous place especially when faced with any health issue.

Thank you for your reply ❤️

Hi @DutifulDaughterWifeMother,

I’ve just seen your thread and wondered how you are getting on?

I was diagnosed at 41 three years ago with CLL and I’m on what they call watch and wait. It takes some time to get your head around the diagnosis. There are some helpful Facebook groups and also the CLL Support page on Health Unlocked which I find really informative and supportive.

@Buntytree Hi, thank you for your message. I am also on wait & watch…….i just don’t know what to make of it all.

Also not helped by having Fibromyalgia.

How did you process it all? X

@DutifulDaughterWifeMother yes, it’s really hard to process it all. Did you find seeing your Haematologist helpful? I hope they were able to provide you some reassurance. The Watch and Wait stages took me a while to get used to as normally with most forms of cancer it’s straight into treatment.

I hope you are feeling ok. Having Fibromyalgia also must be really difficult.