My husband was diagnosed in Jan of this year. Hes on watch, and wait. Ive been with him for 2 appointments and all seems good and positive.
His last appointment was on Wednesday of this week and the Dr told him all looks good and they will move his appointments to quarterly, explained how Chronic lymphocytic leukaemia (CLL) happens and nothing he could have done would have stopped him getting it, its just one of those things.
Hes 55 and us young to get it but hes do moody and doom and gloom. His last conversation with me was he could die next month. I asked him if he was in a different appointment to me because thats not what the Dr said. Its like hes pickimg out words he wants to hear. Hes blaiming work for getting it even though he works in an office.
Hes had the last week on annual leave and says Ive gone to bed early and not stayed up with him.
This isn’t a pity post but hes to understand I work full time, pick our son up from.work at 5am, help my mum with my dad who has dementia and do the majority of cooking and cleaning.
8 weeks in and im at my witts end. He wont read any of the booklets from the hospital or speak to anyone. Any help or advise is appreciated
Hi @TJ3001 it must be so exhausting and frustrating for you.
It is very early days and everyone deals with the shock and fear of diagnosis differently and in their own time. I thought I was invincible at 53 yrs old with my life mapped out in front of me.
After my diagnosis I came home and wrote my will and funeral music and I was in shock and fear for many months.
I also have a husband who is a glass half empty kind of guy and I am a glass half full gal.
The more I try and talk to him the more his shutters come down and he buries his head in the sand
I was diagnosed with Chronic lymphocytic leukaemia (CLL) at 53 yrs old and that was 20 yrs ago.
I have realised I cannot change him.
Yes, there is nothing I could have done. It is not something contagious and there is no family history but I am now fitter than I have ever been.
I have always been on watch and wait , so I am a very lucky girl
Perhaps talking to someone might help you with the feelings, thoughts and practicalities you are dealing with. You might have a good friend or your GP might be a starting point.
Your post didn’t come over as a pity post just an exhausted, lonely and frustrated one. and I really feel for you.
Be kind to yourself and we are here for you and please do keep posting
@TJ3001 it was not a pity post, it was an honest one of the impact C has on the day to day world of our lives. The interruption of life and our expectations, the hand of mortality suddenly becomes real.
In an a reply to you asking if he was in the same room as you with the doc, the answer is no. All his inner emotions, fears and hopes will have altered his perception and hearing, just as much as doctors forget the “power” of their words to us because they deal with it on a daily basis.
He probably knows what you are going through and despite feeling suddenly very alone, he will be battling guilt at letting you down and feeling worthless.
Leaflets are great, but the wave that comes with discovering you have any illness never mind one that comes so loaded as the word cancer, can be an over whelming one.
You are as affected by this as he is and yes you are having to take the role of the active survivor in this.
My marriage was partly destroyed by all the symptoms of my cancer ( Polycythaemia vera (PV) ) being able to play hide and seek and remain undetected. Look back and see if you can spot the story line of his cancer and the effects it has had on both of you.
This can be the start of a conversation between the two of you, I suggest one started away from your home and in a place where you are free to walk and talk.
Cancer is a personal journey, that likes to take passengers along when it can, you need to find your own words to reach out and let him know you are willing to walk with him, but you need him to let you walk with him.
It will not be easy, but don’t judge yourself or him for how you feel, those emotions are real.
Someone I met recently said their cancer made them realise how little they had been communicating with their partner, beyond the every moment stuff of running a household. Cancer they said, had focused the mind and heart back in to talking about the important stuff, the things that brought them together in the first place.
Good luck to both of you and I hope you get the support from the hospital you both need.
It’s scary too going from regular appointments to quarterly I feel safe at my unit and anything that changes in schedule takes a couple days to know I’m going to be ok and they are a phone call away.
Your hubby will be going through all sorts of emotions just like you are. Wondering when it will go from watch and wait to full blown etc
I was diagnosed with PTSD through counselling due to a life threatening illness and didn’t want to die and leave my kids
Trying to find something to blame for having this is also normal some people ask why me what did I do wrong
He may be suffering with anxiety which can make you feel doom and gloom.
It sounds like he has so much going around his head and can’t quiet explain it.
With leaflets just keep planting the seeds, leave them around don’t give it anymore attention
He will go at his pace. I think we all become stubborn when encouraged to do something we don’t want to do.
Would he be open to complimentary therapies like reflexology, Indian head massage
Maybe yourself too
We can’t always change people’s reactions but we can change our reactions to them. I do appreciate your frustration.
Ask him for help with everyday tasks
Agree that maybe a walk and talk could be beneficial side by side is sometimes better than direct eye contact
My boy would talk to me when we went for a drive through coffee watching world go by side by side
Otherwise talking is a no no
Perhaps write an email to each other or a letter