I should have done this a long time ago.
Hubby diagnosed with Chronic lymphocytic leukaemia (CLL) 2 years ago just before Xmas . He has just gotten on with life and has a positive attitude despite feeling rough most days . He is not on chemo yet but has said that he knows in his heart his bloods have changed, and that his consultant will be recommending it next time.
I on the other hand am good at pretending but it’s got to the point where I have developed anxiety and deep fear and depression.
No one has ever asked me how I feel , and I’m absolutely terrified I will lose him. No one really gets it . Friends , family …
I just wondered if there were any other partners who may like to talk .
I’m tired of running over and over in my head the why’s …. I am burnt out with pain and fear . I’m tired of being strong and burying my head in the sand .
Oh @sarah_thomas a great big welcome to our forum and I also wish that you had done this a long time ago.
Firstly I have Chronic lymphocytic leukaemia (CLL) and I was diagnosed with Chronic lymphocytic leukaemia (CLL) 19 yrs ago, at 53yrs old, and also just before Christmas and I can remember it as if it were yesterday I felt in a bubble over Christmas and New Year with the whole world celebrating around me.
I am digressing, but I sent a Christmas card to a friend in Los Angeles who was 70ish at the time, the cards crossed in the post and she had also had just been diagnosed with Chronic lymphocytic leukaemia (CLL). She was treated straight away and is now travelling about to visit her 3 sons and celebrated her 90th a year or so back.
I have always been on ‘watch and wait’ or ‘active monitoring’ and manage my symptoms on a daily basis and my 70th birthday, just before Covid, was my best birthday ever.
You are the important one here and I have been a family member on another occasion a few years back.
I am the worlds best pretender and I have a default (since childhood) smiley mask.
Therefore everyone asked about my husband and you are so right I was screaming out inside ‘but what about me’.
Some friends came to see us on my birthday with a scrummy box of choccies in their hands, and I am looking at these choccies and they literally walked past me and gave them to my husband, I nearly cried.
No, people do not ‘get it’, it is so, so true.
That is why we have our forum which you are now part of.
Personally running over and over in your head the ‘why’s’ and ‘what if’s’ is just completely exhausting and I do not think that there our any answers,
I am not surprised that you are burnt out with pain and fear and tired of being the ‘strong one’.
Perhaps a trip to your GP might help and tell them what you have had the great courage to tell us. There might be some local services that can help.
Personally I found counselling helped me, it was my safe space to say how it really was for me.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Please do keep posting as I would like to hear more about you.
Look after and be very kind to yourself.
Hi @sarah_thomas and welcome to the forum.
First of all can I just say I am really really glad that you posted.
You will find the forum a great support and I think it will help you to share how it is for you with people who understand.
The journey is just as difficult for those around the patient. I know my husband felt he had to be the strong one but actually, he was filled with the same fear and worries as me but didn’t want to show it.
@erica has highlighted the support line which is great if you want to talk things through. Counselling is also an a option.
Please keep posting. We are always here to listen and support you both.
Please take care of yourself as well as your husband.
Sending lots of love X
We are very pleased you have found us! It is no wonder you are feeling how you are after 2 years of likely just allowing your thoughts to remain internal.
Being a loved one and dealing with all the uncertainty that a blood cancer brings is so very challenging and whilst you will be doing a brilliant job at supporting your hubby, there is also a need for you to also be supported. As the old saying goes…you certainly can’t pour from an empty cup.
Have you been able to seek support from your GP at all Sarah? If not, this is certainly a next step to consider as they will be able to support you and follow up with you as time passes so you are not ever fully alone with your thoughts.
I am certain you will be given such wonderful support within our forum space here but i also wanted to let you know that if you feel you ever need to talk things through, our helpline is very much here for you at anytime- 0808 2080 888. So please don’t hesitate to contact us Sarah.
Take Care, Lauran
Hi Sarah, as a fellow wife of someone with blood cancer, i see and hear you. I understand the depth of the fears and anxiety and the depth of the need to be strong, focused, positive and generally ultra organised and forward focused. Do chat here if its useful, others have responded re ways to reach out so i wont but didn’t want to pass on by. My very best friend used to say “we can do hard things” And people like you and I do every day and should be proud of ourselves. With best wishes, jude
Hi @sarah_thomas sorry to hear about your husband. I am new to this forum. My husband has just been diagnosed with Chronic lymphocytic leukaemia (CLL)/Small lymphocytic lymphoma (SLL). Our whole life has just been turned upside down in the space of a couple of months. He is just about to start targeted therapy treatment in a couple of weeks. We had no idea he was even ill. The dentist picked up a lump in his neck and fast forward we are here. I total understand what its like as I’m trying to keep him positive and keep our world going to it really is exhausting.
Hi @Wendyf i have responded to your other post, yes, you must be exhausted.
That is so natural it is an emotional, physical and practical rollercoaster and we are out of control.
The main thing is just go with the rollercoaster actually it is all we can do.
Be kind to yourselves and keep posting