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Well here I am

wornish

New member
Aug 5, 2022
5
0
Hi, my name is David. My wife Janet had been showing signs of dementia for about 2 years and suffering from increasing confusion.
This January she had severe back pain and after 3 months of GP visits she finally had an MRI scan which revealed an “anomaly “ on her lower spine. The GP said he would refer her to a specialist and the appointment would be Jan 2023 or later! He prescribed pain medicine.
We have always had BUPA cover but never used it. I told him and he agreed to refer her.

To cut a long story short she had an operation on her spine which “fixed “ the crushed vertebrae issue and the lower back pain. But, after two weeks it recurred higher up on her back. The surgeon arranged a new MRI and CT scan and that’s when we discovered she had Stage 4 Lung Cancer!

She was admitted to the NW Lung Centre and underwent a number of tests to try and diagnose exactly what type of cancer she had. Also to check if it had spread to her brain. Because of her fragility it became obvious that she would not survive any of the possible treatments . So after a lot of pleading they finally agreed to discharge her 3 weeks ago.

The Macmillan nurses were very supportive and they do a great job. I really appreciate what they did.

But and it’s a big but the communication in the NHS is abysmal. Delay after delay and no one in overall charge. Hand written notes in 2022!

We came home three weeks ago and after chasing, I was finally contacted by phone by our GP and then a Macmillan nurse. The GP said he would visit a week later which he did same for the Nurse. The NHS has still not adopted email it seems it’s down to snail mail!

So here I am, my wife is struggling to say how she feels, I feel abandoned and all alone.
Despite daily texts and calls to our children and Janet’s sisters.
Promises made are meaningless but I will do whatever is needed to make her remaining time comfortable.

Never made a post like this before.
 

Bunpoots

Volunteer Host
Apr 1, 2016
6,395
0
Nottinghamshire
Hello David @wornish I’m sorry to read what has bought you here but welcome to the forum.

It must have been a dreadful shock for you and your wife. We have other members who have had to deal with both dementia and cancer and I’m sure someone will be able to share their experience with you.

Now that you’ve found us I hope you will keep posting, our members are friendly and helpful and there’s always someone to share your worries with.
 

try again

Registered User
Jun 21, 2018
504
0
So sorry to hear of your situation . You have a great deal to deal with and I wish your family well
Sadly the NHS is struggling due to underfunding but I have found them to be pretty effective once a diagnosis has been made (oh has a low grade cancer, my mum is PWD).
 

wornish

New member
Aug 5, 2022
5
0
Hello David @wornish I’m sorry to read what has bought you here but welcome to the forum.

It must have been a dreadful shock for you and your wife. We have other members who have had to deal with both dementia and cancer and I’m sure someone will be able to share their experience with you.

Now that you’ve found us I hope you will keep posting, our members are friendly and helpful and there’s always someone to share your worries with.
Thank you for responding II’s good to hear from someone.
 

GillP

Registered User
Aug 11, 2021
1,711
0
Hello and welcome David. I am so sorry to read about your wife’s health. I cannot imagine how difficult it must be to have to manage cancer and dementia.

I hope that your wife and you get the help and care which you both need.

It is always so worrying when our loved ones are unable to communicate how they feel. We sometimes have to look for clues and try to work things out.

Hopefully Macmillan nurses and your GP will offer help and support to you both.

Remember to look after yourself. You are both in my thoughts and prayers
 

wornish

New member
Aug 5, 2022
5
0
I managed to reset my password so I am back in.
I wish I had the trust in the NHS that others here seem to have, but when it comes down to the sharp end the GP's are overstretched, the District Nurses can't keep to their appointments as promised and the MacMillan nurses try to hold it all together.


The "system" is broken. The current TV adverts for the NHS really don't help and in fact, simply make it worse.

I have learnt that If you have cancer as well as dementia you are on your own.
As I said in my introduction I will do my best to look after Janet.
 

CAL Y

Registered User
Jul 17, 2021
355
0
Hello David @wornish . I’m so sorry about your situation. It can be a very lonely time . I realise that nobody on this forum can physically help but we are all here to listen and hopefully make you feel that you are not as alone as you feel right now.
I lost my husband nine months ago and in a similar situation to yourself.
His dementia was only diagnosed about 6 months before he died.
We were sent away with a handful of leaflets and no other offers of help.

Three months later came a diagnosis of terminal cancer and the treatment could not have been better.
After being left alone to cope with it as best I could, suddenly I was metaphorically beating them off with a stick.
I believe that he got much better treatment by having cancer than many dementia sufferers and their carers could ever hope for.
What a sad indictment of the NHS.

I wish you strength to deal with this. We are here for you.
 

wornish

New member
Aug 5, 2022
5
0
Hello David @wornish . I’m so sorry about your situation. It can be a very lonely time . I realise that nobody on this forum can physically help but we are all here to listen and hopefully make you feel that you are not as alone as you feel right now.
I lost my husband nine months ago and in a similar situation to yourself.
His dementia was only diagnosed about 6 months before he died.
We were sent away with a handful of leaflets and no other offers of help.

Three months later came a diagnosis of terminal cancer and the treatment could not have been better.
After being left alone to cope with it as best I could, suddenly I was metaphorically beating them off with a stick.
I believe that he got much better treatment by having cancer than many dementia sufferers and their carers could ever hope for.
What a sad indictment of the NHS.

I wish you strength to deal with this. We are here for you.
Thank you for responding. I am truly sorry to hear of your loss, don't know what else to say.

I was beginning to think it was just me. that felt this way, Its kind of strange to hear from someone who has been through very similar circumstances and I really know how hard it is to reach out. Thank you.

It's like the perfect storm, we have been married for 49 years and have had a good life together down to teamwork. But, nothing prepares you for a parting like this.
 

CAL Y

Registered User
Jul 17, 2021
355
0
Thank you for responding. I am truly sorry to hear of your loss, don't know what else to say.

I was beginning to think it was just me. that felt this way, Its kind of strange to hear from someone who has been through very similar circumstances and I really know how hard it is to reach out. Thank you.

It's like the perfect storm, we have been married for 49 years and have had a good life together down to teamwork. But, nothing prepares you for a parting like this.
David, you are right, there is nothing that can prepare you for this situation and I’m so sorry that this is happening to you.
There isn’t anything that I or anyone else can say. Such is life. My husband and I knew that sooner or later one of us would be in this situation.
I know exactly what you mean about teamwork. It’s wonderful to be part of a loving team and it’s not nice to have to make decisions without consulting your “other half”. a common saying but never a truer word. Take care.
 

DreamsAreReal

Registered User
Oct 17, 2015
425
0
I was beginning to think it was just me. that felt this way, Its kind of strange to hear from someone who has been through very similar circumstances and I really know how hard it is to reach out. Thank you.
Hello @wornish and welcome to TP. I'm sorry you and your wife are going through such terrible times. You might already have found it, but there is a sub-forum for carers of people with both Dementia and Cancer. You don't have to post in it, but there might be some useful posts in there from people who've been through it.

 
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