Welcome to the forum L-W82 although I'm really sorry about your mam.

Sadly many of our members and their families cancer journeys have also been affected by the pandemic so will understand what you're going through at the moment and hopefully some of them will be along soon to offer their support and share their experiences with you.

We're thinking of you L-W82.

Kind regards,

Steph, Cancer Chat Moderator

It is so sad to read this.  Your mother definitely deserved better from the NHS and it must be so hard for you right now. You might find that channelling some of your grief by doing something positive - whether approaching your MP, your local NHS trust about this issue or even volunteering to support a local charity - may help.  It's very early days in terms of your loss.  I do wish you find comfort and support locally.  Is there a bereavement group in your area?

I think it's not what the government want the wider population to know about but, yes, so many people have been adversely affected by the way the pandemic has been prioritised.  For myself, a two week referral at the beginning of March was put on hold until the end of July at which point cancer was confirmed.  Initially I was told that the cancer was contained within the bowel and no further treatment would be required.  However by the time surgery took place, the cancer had moved into my lymph nodes and I am starting chemotherapy next week.  I can't help but think this might not have been necessary had I been seen when originally referred.  I dread to think that the spike in Covid cases which is pretty much here already is going to have the same impact on others - both in terms of delayed treatment and possible consequences thereof.  i contacted my MP in a bid to raise awareness of this situation and asked that he do his best to ensure that sufferers of other illnesses aren't once again thrown to the wolves whilst hospitals fill up with Covid patients. 

Surely it's not being unrealistic to suggest that Nightingale units are used for Covid, hospitals for other urgent cases?

Thank you so much for your reply.

I am so very sorry to hear of your diagnosis and I do wish you the best for your treatment and recovery.

It has helped me, in my grief, reading through some of the conversations in this forum. We as a family do want to challenge the decision that was made though, in regards to postponing all treatment, and I thank you for your advice to contact the MP. I think this will be a good starting point.

People like yourself and my Mam SHOULD NOT be let down by the health service, in a time that's most needed.

We had months of fighting to speak to someone, to find out what was going on, always coming up against brick walls. Towards the end it was a case of begging them to do something to save my Mam.

And another good point...what's happened to the Nightingale Hospital (Principality Stadium) Cardiff? We were discussing that just the other day. There seemed to be a bug rush to staff it and then nothing, no mention of it since!

It is an awful time that we are living in at the moment. I can only pray that it gets better.

I do wish you well. Do not let them postpone your treatment further or brush you off! Keep on to them!  

We were badly let down by the government and all help regarding  our lovely mum.The 

3rd week into lockdown our mum was following government guidelines and self isolating for the good of the country .

We'd just lost our dad 6 months prior so it was tough for her.Every day was tough and she became ill during this time .Doctor said to take her to hospital for tests ,we took her and waited 4 hours for her as they wouldn't let us in ,then she called to say they were keeping her in for tests .

For those 3 weeks she was in there we fought with that hospital night and day to get in to be with here (everything was "you can't do this or that because of covd")She was crying everyday .Her care was inadequate,the information was inadequate.My sister forced her way into the hospital in the end.

We felt the hospital wouldn't give us the diagnoses ,which was end of life due to cancer ,because they would of had to let us all into the hospital.

They sent her home after 3 weeks ,an ambulance couldn't bring her out because of COVD.

Her son in laws had to carry her into her home because she couldn't walk.And that's hwhere we were left with it ON OUR OWN.!

One week we had with her .Her doctor of 20 odd years didn't come to see her .Facetimed her.

Palliative nurses couldn't give mum their undevided care,or district nurses for that matter .

Her end of life care was appalling .78 years old paid more  than her dues in her lifetime for her community ,and she couldn't get the best care when she died

Everything in this world was against us even down to our local vicar telling us to "just do a graveside service"we fought that with great muster and found a church that would give her the dignity she deserved.

We have written to several of our MPs during this time even BORIS !(he hasent replied )and are in the process of doing all that complaint stuff because we feel as a family the government needs to learn lessons from this pandemic and how they dealt with it concerning cancer patients or end of life .

We are just still in massive shock over all of it and find that's there's nowhere to go for help support or compassion which makes us worry for the future for our own health .

This story rings so true for myself and, I believe, many other families. 

I'm so sorry and saddened for what you have been through, especially having lost your Dad so recently. 

I'm going to write to my MP but I think the only way to get heard and to stop this happening to others, is to start up a campaign. 

My Mam also shielded at the beginning of the pandemic, on goverment advice.

At the start we were following these guidelines and accepting what the oncologist and consultant were telling us. 

We had the same experience with the hospital.

My Mams health was deteriorating quickly and it became a fight to get anyone to help her.

At the end we were begging for them to help save her life albeit too late.

Fluid had started collecting in her abdomen on the Sunday, before she passed, and she was in so much pain. The district nurses and Macmillan did all they could but speaking to the doctor and trying to get them out to treat my Mam was a nightmare. 

It wasn't until the Thursday afternoon that the GP rung back and told us there was a bed waiting for my Mam and to take her up to A&E straight away. 

Myself and my brothers managed to dress her and help her into the car. There was nobody to meet us at A&E, I had to go and look for a wheelchair in another part of the hospital and then fought with the nurse to let me go in with my Mam.

There was no way I was letting her go in by herself and thank goodness I persisted because we were there for 7 hours! A terminally ill patient stuck on a trolley in a corridor! 

I ended up bringing her home. We were also told there was no ambulance available because of covid-19 restrictions. 

My Dad and I spent 2 and 1/2 hours trying to get my Mam upstairs and back into bed, it was heartbreaking.

That was the Thursday evening and she passed away on the Saturday. She deserved so much better! 

People need to learn about what is happening. We have no faith in the government or the health service now and it does make you concerned about getting older.

L-W82,

          l can only read yours and others posts with feelings of disgust,horror,overwhelming sympathy and absolute sadness for the people lost who deserved so much better.

l struggle to blame the medical profession who have been placed into a nigh on impossible position,feel the government have been inept and lacking backbone,pressured into flip flopping by constant sniping from press,oppostion,and every expert with an opposite view.But l reserve my greatest contempt for the section of our society that shout loudly and carry on as normal ignoring rules set in place or making clear they will not abide by further restrictions put in place.Their actions undermine unity and concensus,making it difficult for us to face this challenge as a nation,instead we have a weak fragmented approach leading to whole sections of medically challenged persons being let down without even a basic level of care.All too easy to focus on the situation only affecting the elderly,when the reality is that cancer is increasingly diagnosed in those of a younger age ,with growing families of their own.

                                              Hearing daily arguments about whether the the spread is in the home or in hospitality,what should be shut or open is just clouding the reality that increased contact equals increased spread,wherever,whenever. It is a sad situation when we arrive at position when we can no longer see the wood through the trees,and put our own percieved freedoms and difficulties above those who are suffering worse than ourselves,sorry l probably have not expressed this very well but l fear for those coming forward with a cancer diagnosis,

                                                                                          David

Thank you for your reply.

I understand that it's not the frontline staff to blame, but those at the top of the pay chain in the hospitals and the government.

I have the upmost respect  for the nurses and doctors dealing with this pandemic and know that they are only following orders concerning the non covid patients.

It doesn't appear that Covid is going anywhere anytime soon. It's vital that things change and people start to get the treatment they so desperately need to stop more suffering and dying to soon like my Mam. 

I want to start up a campaign so myself and other families, who have suffered, can be heard.