Hello, my wife who’s 49 has just been told she has LLC over the past few days and I want to contact people who have family members going through the same issue
My wife is fit and healthy at the moment and only found out during a routine blood test she has and been told to wait and they will monitor her and her next review will be in January
As her husband I feel awful and I can only imagine how she is feeling
We have sat and talked it though together and I’m trying to support her as best I can
I’m personally finding it all very hard to understand and to come to terms with it all. I have spent the last few days crying on and off. I have so many thoughts about the future and am scared for my wife and what the future holds for her, myself and out two sons
If there is anyone else that can offer me advice and any wisdom I would be very grateful
Hi there, my hubby doesn’t have the same blood cancer but i was struck by your words. I think i felt/said/silently screamed them when we were first faced with this. I do understand how very hard it is to love someone in this situation- well i dont mean it’s hard to love them as theyre the same person but i know what its like to feel scared, anxious, unsure and all the while desperately trying to appear strong, together and ready. I also know what it’s like to have to continue with some of the normal stuff like cooking, washing and cleaning. All while your heart breaks. Might sound melodramatic but i think that’s what happens over and over again. I’m reading this back as i type and im shaking my head - i really just wanted to say i hear you and you’ve got this. As a family, as a couple and as a dad, you’ve got this. I do wish you and yours well, it has to be a positive start to this experience that your wife feels well and drs feel no follow up necessary till Jan. You know if anything changes that you can reach out to her medical team. All the best
Thank you for your reply and kind words
Hi @Dan1703 I am so glad that you have found us and had the courage to post.
I think it is so hard to be a spouse, you are the unsung heroes.
Firstly I believe that you are both in shock.
For me that shock lasted a long time.
I was diagnosed at 53 yrs old with another blood cancer, having hardly ever had a day off sick.
I am now 72 yrs old and my 70th birthday was my best ever and I am fitter now than I have ever been.
I have always been on watch and wait (active monitoring) which your wife appears to have been on.
The main thing I believe is communication between you and your wife, it sounds as if you are a good supportive team.
I personally (no medical training) feel that it is healthier to cry than stuff it all down like I do.
I hope you don’t mind me asking but how old are your sons?
The reason I ask is, personally again, I feel it is best that, depending on their ages, that they know what is going on and feel included as opposed to sensing that something is wrong and putting 2 and 2 together and making 5.
Obviously they only need to know age appropriate information.
I am sure the Blood Cancer UK support line will give you some thoughts on this.
Obviously the festive season is approaching and all you will be seeing on TV is happy families celebrating. I expect your boys will have plans and expectations too,
Give yourselves time and be ever so kind to yourselves.
Please keep posting and don’t forget the Blood Cancer UK support line and we are here for you.
Hello @Dan1703 and welcome to the forum. Your post highlights so much how it is difficult for the patient and people close to them.
Your wife will appreciate you sitting down and talking it through with her. My husband was the same. It meant so much to me and he was my rock. However, I know how difficult it was for him and I’m glad you’ve found us so that we can support you both.
Emotions are all over the place, especially those first few weeks. Just go easy on yourself, hug lots and keep talking
Thank you for your message Erica
My sons are 15 & 17, my wife has said she doesn’t want them to know quite yet what is happening and I will respect here wishes but we both know we can’t keep it from them forever
I am glad I found this forum it’s helped knowing other people going through similar experiences and knowing i can ask questions as things develop over time
Thank you nichola
We have spent the evening together snuggled on the sofa just being together
I feel I need more information and I have downloaded your guide which has explained it a lot more and it’s reassured me a little
Obviously I’m having a lot of thoughts about what’s happening (some of which aren’t nice) but I’m sure this normal
It’s early days on our journey but I feel better I have this forum to ask questions and learn more my wife’s condition
Hi again. I think telling the children (mine were 11 and 8) at the time was the hardest part and I left it a while. When I finally told them the oldest had already clicked that something was up and had heard conversations that I though she hadn’t. There is no right or wrong time but you’ll know when the time is right for you. I think it was a relief for us all once we had told them- albeit a very emotional time. Five years on and it still brings a lump to my throat now.
We have regular check ins now which I still find tough - but I think - supports us all x
Thank you so much for sharing this with us and as others have also highlighted- i am so pleased you have found us. I hope you are doing okay today?
You have mentioned so many feelings that are really understandable when a loved one is often a difficult diagnosis.
We appreciate your emotions maybe somewhat a on a rollercoaster right now but it sounds like you are very much taking care of each other.
In case this is of any help in anyway, we do have a booklet for those who have been newly diagnosed. It is generic to all blood cancers but does offer some really great practical advice & support.
You can download a copy or request for it to be sent to your door via this link- Your blood cancer diagnosis: What happens now? | Blood Cancer UK Shop
I know you will receive brilliant support from all our wonderful forum users and you will meet people in similar situations as yourself but do also know that as a charity we also have a helpline which is open 7 days a week and you are very welcome to contact us at any point just to talk things through-Blood cancer information and support by phone and email | Blood Cancer UK.
Take Care, Lauran
Thank you for your report
Today both my wife and I feel a little calmer (although we both still have our moments)
The forum and the support has been really helpful to me
At the moment we are still coming to terms with it all
I’m sure I will return and ask more questions in the days, weeks, months and beyond
Good luck Dan the both of you.
While its a horrible timw the positive is that she wi get help and care in the future
Many people are ill a long time before diagnosis…i was .
So i know its a small crumb of comfort but in time the benefits wl show.
All the best…Lee
Hi @Dan1703 I have been thinking about you and your wife and I just wondered how you are both doing now, especially with the festive season approaching?
Look after yourselves
Many thanks for the message. We are doing ok and staring to come with terms the situation
We are talking about it a lot and supporting each other when things get on top of one of us
Unfortunately I got Covid on Sunday and it’s made me completely paranoid about giving it to my wife and making her ill, so that’s not helped
Many thanks again for your message and support
Hi @Dan1703. My husband has just got it to (avoided it for three years) and is terrified of giving it to me as well. It has also caused anxiety with my daughters - a bit of a trigger for them. Just when you think you have enough to deal with! Take care won’t you x
Oh @Nichola75 I don’t believe it, your poor husband.
Thanks also for highlighting how you and your daughters are affected by your husbands Covid diagnosis
I am sure that it will help others.
Look after yourselves all of you and keep apart
So sorry to hear that @Nichola75. Thinking of you all. Hope your husband soon recovers and doesn’t share what he’s got. Warm wishes. Willow X
Thanks @Willow and @Erica. He is feeling a lot better today. Girls won’t let him out for at least five days They have a busy weekend so hoping it will take their mind off it. I’ve skating at Somerset House. tonight - think I need to wrap up warm. I hope you are both ok X
@Nichola75 I am glad your husband is feeling a bit better today, but isolation still in order.
Oh, please let us know how the skating at Somerset House goes @Nichola75 , it sounds magical, but yes, wrap up very warm, thermals and many layers are in order !!!