Husband has CLL and i am struggling with my emotions

Caring for & supporting a loved one
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My husband was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2023 and he has been on watch and wait. At his last appointment when his blood tests were different. They told us it looks like its progressing, this has sent my emotions into a spin and im so scared and worried. He’s back in 3 months for another appointment but the waiting is awful. Any advice on how to cope with my emotions. My husband says it will be what it will be and is trusting in the doctors, but im not as relaxed about it all x

Im just so sad that this is happening to him, he is only 57 it all just seems so unfair. He takes care if himself so I dont understand has he has developed this x

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Hello @GillyWitch

Welcome to the forum and for taking time to send in your post, I’m confident you will find lots of support here.

I’m so sorry to learn about you and your husbands situation, it must be very difficult to come to terms with everything.

I’m a Chronic lymphocytic leukaemia (CLL) patient (diagnosed in April this year and like your husband, I’m on active monitoring) with my next blood test due in February 2026.

Again, like your husband I am 57, so I consider my self a spring chicken, and I find the support and care from my wife and family is paramount to my wellbeing. I’m confident your husband feels the same.

I’m not sure what advice your husband has been given by his medical experts, although imagine its not dissimilar to mine but we are all different. My advice to date has been dietary, lifestyle (exercise), and some mental health support.

I find its vital to keep in touch with my medical experts, and I often go to my GP for any advice, if even for something as simple as an infection on my skin for example. I don’t know if its related or not, but I prefer to be belt and braces if you pardon the expression.

You may find the section - My friend or family member has blood cancer | Blood Cancer UK a good place to visit, and also Blood cancer: mind and emotions | Blood Cancer UK.

Beyond the above you can always speak confidentially with our support services team for information and support on 0808 2080 888

Please do feel free to keep in touch, you are not alone, and we are all hear to support each other through our journeys.

Take good care of each other

Mike

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Hi Mike

Thank you for taking the time to respond and sharing your very personal experience living with Chronic lymphocytic leukaemia (CLL) yourself.

The information you have provided and your own suggestions for ways to live with this diagnosis will be of great help and support for us both.

This is a process that you have to live with, I guess it just takes a little time to adjust to each event and change as it happens. We are doing our best to do this being mindful to live in the moment each day, that seems to help.

I am sorry you are also living with his, you are not alone either, like you said, we are all here to support one another.

I wish you all the very best with your journey, take care of yourself too.

With best wishes
Gill

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Hi @GillyWitch I am so glad that you have found us.

I also have Chronic lymphocytic leukaemia (CLL) and I was diagnosed at the age of 53yrs and I have been a very lucky girl and I have been on active monitoring ( I prefer to call it that as I feel it describes it better than watch and wait) for 21 yrs, I am now 75yrs old and my 70th birthday was my best birthday ever.

However my husband has always had his head in the sand and is this type of guy over everything and never mentions my Chronic lymphocytic leukaemia (CLL).

I manage my symptoms mainly my fatigue.

My diet is a fairly balanced diet, with the odd treats, and I am a great walker and Pilates girl.

@GenesisDevice has given you a great response and I would say give yourself time and I think being a wife is so hard, you have all the fears, thoughts and emotions and have to keep everything running smoothly. Perhaps just take it a day at a time and getting emotional help is a strength, not a weakness.

Please do keep posting, we are here for you and I have found that I can say how it really is for me on our supportive forum. Be very kind to yourself.

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Thank you for replying Erica, I am so pleased to hear you have been managing your Chronic lymphocytic leukaemia (CLL) so well and had a fabulous birthday.

We are getting our heads around it, there are just a few curve balls along the way aren’t there which is a bit of a shock when everything seemed to be going okay. The information both you abd Mike have given has been very helpful.

Im very grateful to you for your support and wish you all the very best :blush: x

Gill x

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