Bad morning

Helo MrsVT 

I have been reading all your posts and wanted to reach out with a hello and a big hug. There are awful times ahead I am afraid and what you are experiencing now is a huge reaction to your very sad loss. Your husband sounds like a very nice person and it is so painful to bear. But you will. Day by day. Keep it simple and have a rant to us whenever ! We all understand.  This forum has been my absolute lifeline. Two years and 4 months later since Barry died. I still can't believe it now ? This keeps me going.

Love and hugs 

Went out for lunch with mum, sister and mutual friend. Drove my mum to the cafe.

Took wrong turning, got lost in a familiar place. Saw a sign towards home and said to mum I’m heading home. She said “good idea then we can get back on track” I said “no. Home. I’m going home.” 
Good ol’ mum. She said nothing. But her saying nothing made me change my mind and got us to the cafe. So glad I did as we had fun.

Our mutual friend lost her husband 5 years ago and at the time shut herself off from everything and everyone to the extent she had a breakdown. She’s all good now and lives her life to the fullest and at the age of 75 goes cruising twice a year!

But boy. Coming home to an empty house. No response to “I’m home Buba”. 
No one to tell about our lunch. Or Valerie’s escapades. Or mums huge omelette.  

I’m much better than this morning. Calmer.

Thats our lives now isn’t it? 

Hugs to you all xx

Been a really up and down morning.

Woke up crying. 
Isn’t it the absolute pits to wake up alone. Again.

Manic cleaning in kitchen. 
But tears again over “his” air fryer.
He did 99% of the cooking.

Decided garden would be safer. 
Poor pear tree. I think I’ve hacked it to pieces!

Text from Funeral home. 
Valens in his casket and ready to come home today. 
Woosh with the tears.

Call from mum asking what time I’ll be round for lunch and then art group.

In an hour, 4 weeks ago, as we were about to leave for Newmarket to go to the hotel to stay overnight before his very delayed 1st chemo to hopefully give us the 3 to 6 months we get the call. 
From the oncologist to say the scan shows spread to brain stem.

I am now so damn furious with that doctor. 
He could have waited till the next day when we went to the hospital and tell us face to face. Not over the phone. 
All I can see is my beautiful darling man slump in defeat saying “please, please, something must come my way soon”. 
A spark went from him then. 
And from me. 
But we both buoyed ourselves up for the chemo the next day. 

As you know the next day only lasted til 4.40am.

I must stop crying. 
I can’t see mum like this.

Hugs to you all.

You poor Darling. That sounds like a truly terrible morning. I had the same disbelief from my darling Paul when the consultant told us he had two to three weeks,(He managed 11 days). He said, “But they told me I had eighteen months”. It happened so bl…y fast. The pain of seeing that hope die is horrendous. I love the name Valen, very unusual. Sending hugs and cuddles to all. Xxx

I can hear the disbelief / despair in those words from Paul echoed in Valen when told his cancer had returned after being told everything was okay and had 3 to 6 months if he started chemo.

Like you say, so fast you’ve only just got your head round what they said! 

Valen was born on Valentine’s Day (but not short for Valentine).

I knew we didn’t have long when the consultants secretary called, to say that Paul needed to come in a week earlier. The reason given was that the ‘consultant was going on hoiliday’. My poor darling believed her. That made it really upsetting and traumatic for him in his last days. When we were told, I sat on the floor and hugged my husband. The consultant said’, “I haven’t seen that before”, and I said, “I don’t care.” That was one of the hardest days of my life. 

 Christ.

You’d think these professionals would have some compassion still for their patients and families. 
But it sounds like Paul’s and Valen’s at least have had that either knocked out of them or not had in the first place.

Sometime down the line, when I’m stronger, I am officially complaining about my beautiful man’s treatment by NHS, the private hospital and his private health insurers. 
I am utterly convinced that the oncologist telling him over  the phone about the brain tumour the day before the avoidable delay in his chemo led to him having a major heart attack from stress. 
Let alone the avoidable distress caused.

4 hours and it will be 1 crushing month.

I am nearly twelve weeks in. I started Bereavement Group Counselling six weeks ago, and it has really helped with processing the loss. In the last two days, something has ‘shifted’ in my brain and the intensity has lessened. Also, I am actually sleeping better. I am hoping it continues. I went via St Barnabas. I have also made two new friends from the group. Sending hugs and cuddles to all. 

I've started an investigation into my husbands care in hospital and how we were treated. I feel we were kept in the dark about how ill he was.

It's through PALS every hospital has one.

I don't want compensation and the NHS will never admit they were wrong, but if it shows 'something was wrong' then hopefully more people will be treated better.

Xx

My sister in law was a matron in a hospital and is going to help with the complaints. 

I also do not want compensation.
I just want no one else to have to go through the daily stress of calling the private insurance and private hospital chasing up letters and reports to start treatment.

That wasn’t our job on top of dealing with the diagnosis.
Valen was going to try an experimental combo of chemo + drugs which we were told may delay things by a few days.
It took 3 long, gruelling, stressful, upsetting weeks to get a start date. 
Had he started when we told he would, we may have had an extra few weeks or months.

Also I want “lessons learnt” that you don’t tell someone over the phone the day before your going to see them anyway and treatment starting that the scan (which the NHS had) from 5 weeks ago shows brain stem tumour as well as all the others causing undue distress.

I feel this is going to become a mission!