Why ………..

[JL76]

My fit and healthy 48 year old husband sadly passed away on the 6th November 2022.

It all began on the 3rd October 2022 when he coughed up some blood that morning whilst brushing his teeth. We got him an appointment that day to see our local GP who after a quick check of his chest was not overly concerned. He referred him for a chest x-ray to see what was going on. Friday 7th October he was called back to the GP to say that he was now concerned as the x-ray showed shadows and lesions on his lungs and that he needed to have further tests.

Over the next 3 weeks my husband had a CT scan, an Echogram, a lung function test, a biopsy and an MRI scan.

Not once did anybody mention what any of the results was or what they thought or knew it was.

The waiting and not knowing over those 3 weeks was the worst. We tried to keep busy by going for 6 mile walks as my husbands mental health was being affected. He was very down and thinking the worst as some people do.

We have 3 beautiful daughters (29,/ 15 & 12years) we told our 29 year old what was going on and we mentioned to our 15 & 12 year old that dad was having some tests as he was feeling tired and had a bit of back pain ( which by now he had)

Saturday 29th October my husband said he couldn’t grip properly with his right hand and it seemed a bit limp. Monday the 31st October I contacted the consultants nurse to discuss what had happened over the weekend with his hand and that my husband was getting quite breathless and coughing up considerable amounts of blood, particularly at night. He said there wasn’t much he could do and that we need to have our appointment with the consultant ( which we still didn’t have a date for) I asked if the rebuts where back and he said that tests was being looked at by Christie’s and Salford and that if my husband gets any worse to call 999.

Tuesday 1st November my husband called me into the living room around 5pm to his hand shaking vigorously, at the time I wasn’t sure what or why this was and called 999. At 7;30pm the ambulance arrived and by this time my husband was very agitated, clammy and pumping with sweat. Whilst the paramedics where on site my husband had a seizure. He was taken to our local A&E where he had another seizure.

Whilst in A&E (resus) the doctor came over to us and asked if we knew what was going on and had we been told anything. We explained we hadn’t and it was then that the doctor told us that my husband had cancer in both lungs and his brain.

He was moved to a ward where he was on oxygen, steroids to help the swelling in his brain, morphine, Ora morph,and paracetamol, and couple of others I can’t remember. He had a couple of good days with visitors laughing d as bf joking but also had bad days where he was in a lot of pain and his speech was affected.

Friday 4th November his consultant came to see us to confirm the he had stage 4 cancer in the lungs and brain. He said that the cancer had cannon balled in his lungs and that he had 3 spots on his brain. They didn’t quite know where the primary cancer has started, however they was going treat it as primary lung cancer. We was told he would be going over to Christie’s hospital for treatment ( possibly Chemotherapy and Immunotherapy) Sunday 6th November

Sunday 6th November we got a call at 3am to say that his oxygen levels had dropped and that we needed to go. My husband was sat up when we arrived and questioned what we was doing there at that time. We said the nurses where concerned about his oxygen levels and wanted us to sit with him as he was a little anxious and agitated.

A doctor took us into a room to discuss what was happening and that he might not make it through the night.

We had to prepare for the worst. We asked to make him as comfortable and pain free as possible which did take some time.

mysekf and eldest daughter sat with him until he peacefully passed away just before 4pm that day.

We are absolutely heartbroken and devastated 💔 it was 34 days from that first symptom until passing.

Previous to that he was fit and healthy with no symptoms; no cough, no chest infections, no headaches, nothing.

His death certificate said he died of a metastatic cancer of an unknown primary.

we feel that we wasn’t told everything and that they was keeping something from us. I have read peoples post on her about the size of peoples tumours and nodules etc and they never told us anything like that. Never showed us an image of any of the tests and I just feel I want to know more.

Apologies this has been a long read but as you can imagine it’s been quite a tough month for us as a family.

I have lost my 48 year old husband, out girls have lost their amazing father, a father has lost his youngest son, brothers and sister have lost their youngest brother and friends have lost an amazing man .

[Ianhick]

So very sorry to hear your husband has passed away. Deepest condolences to you, your daughters and wider family and friends 💖

Much love to you all ❤

Ian

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear JL76

So very sorry to hear of the sudden loss of your husband, this must be understandably devastating for you all and it may be that you are all still in a degree of shock.

It sounds like it has been a very aggressive cancer, and sorry there was no communication that there was anything suspicious on his scans, often patients are informed of that leading up to the biopsy.

You may wish to make an appointment with the GP to discuss, and request a double appointment to give you time to talk. You could also call the hospital switchboard and ask to speak to the consultants secretary and request an appointment.

Alternatively you may wish to contact PALS at the hospital (The Patient Advice and Liaison Services), they provide confidential, advice and information for patients and families: nhs.uk/nhs-services/hospita...

It sounds like you have many questions you need answered and to perhaps understand the process of what has happened. I do hope you get to speak to someone to explain things and listen to you.

You may be interested to know that The Loss Foundation provides free bereavement support for those who have lost a loved one specifically to cancer: thelossfoundation.org/

There are no words to express how deeply sorry we are that you have all had that experience, this has been quite traumatic for you all along with the speed of how everything unfolded.

Please do not hesitate to call us if you wish to chat, our free phone ask the nurse helpline is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, you can also email us at [e-mail]

Our deepest condolences

The Roy Castle Support Team

[Lyubov]

How devastating the loss of your beloved husband so suddenly and with no satisfactory medical explanation from the doctors. I send deepest sympathy and prayers for you and your family.

[Manninmaid]

So very sorry to hear of the loss of your beloved husband and the events leading up to his passing. I can only imagine how devastated and shocked you and your family must be. Please accept my deepest condolences. Sending love to you all at such an incredibly difficult time. x

[Pip444]

Your post has been heartbreaking to read. I do hope that you manage to get the answers you need to help you all come to terms with your loss, your husband sounds like an amazing man.

Sending deepest sympathy to you at this time. x

[Cockailschemocancer]

This is heartbreaking for you all and so unfair, lung cancer the silent one. I hope you get some answers to the many questions I am sure you will have. Sending my thoughts and wishes to you and your family. Xx

[Cmtd]

So very sorry 😞 for you all much love xxx

[Dismal]

I'm so sorry that this has happened. My husband got an MRI scan the week after his chest x-ray showed something and got the result the week after.

Sadly he died too.

Take care.

[simlut]

I’m so very sorry, the shock of all that happened to your husband in such a short space of time must be truly devastating. This disease is evil and ruthless.

Sending you and your children lots of love and hugs xxx

[KT22]

So very sorry to read about your beloved husband. You must be in shock & absolutely heartbroken. Cancer is a cruel disease & seems to affect previously healthy people.

My husband had a similar story & outcome. I would suggest you ask PALS at the hospital for a meeting with all involved to get the answers you need. Sadly I’ve had to take my wonderful husbands case to the Ombudsman. I am still devastated & finding it hard to cope, I take it a day or even an hour at a time.

Sending a big virtual hug to you , your children & family. Be kind to yourself. Xx

[sassassas]

Dear JL76

I'm so very sorry to read about your husband and the devastating experience you have had. I hope you are able to get the answers you deserve. My thoughts are with you and your girls.

Sarah ❤️

[Tracyd02]

hello, firstly my thoughts are with you and your family. 3 years today we lost my mum, she also had lung cancer as a primary and then secondary cancer in her back and then her liver. I believe cancer of the brain is a common secondary cancer with lung cancer. We had little conversation or information tbh and I researched and went to appointments with questions, if you have questions and want answers then seek them, you deserve this. I’m not sure if you have been offered any support for you or your family but Sue Ryder have grief kind open to all, you will know when your ready, and it may be now, or later. Sending virtual hugs to you x

[Bow-19]

I don’t know what to say, it sounds like a nightmare and so tragic that your husband has died. It might be worth contacting your local hospice to see if they can offer you bereavement support. Sorry for your loss. Thinking of you and your family. The Ruth Strauss Foundation offer bereavement support to children who have lost a parent. I will see if I can find a link x

[Bow-19]

Here’s the link to Ruth Strauss Foundation ruthstraussfoundation.com/f...

[Palpman]

I feel your loss. I too lost my beloved wife 11 days after we celebrated her defeat of lung cancer. It had metastised to the brain.

[JanetteR57]

So sad and sorry to read our devastating story and send deepest condolences at such a difficult time for you all....

I experienced similar with a very dear friend who'd been to his GP with a bad shoulder and given painkillers than referred to community physio - like your husband, he didn't appear ill and was still working although energy levels much lower and shoulder pain worsening .. it went on a few months and after trying acupuncture, osteopath, chiropractic none of which helped, he paid for a private CT but he sadly collapsed on arrival at the hospital and taken in for a series of tests - like your husband, his wife wasn't told anything and they put him in a side ward - she said she thought to die - which was a total shock - she decided she wanted him at home and when she went to the hospital she was told that he had widespread lung cancer in his spine, liver and brain - he died 3 days later - just 10 days after admission.... like you, devastating but this was in 2011... as I was recovering from my lung cancer surgery after being diagnosed that January.

I channelled my anger and disbelief in raising funds for more lung cancer research which was and is so underfunded given how many people develop it of all ages, backgrounds and irrespective of whether they've smoked or not. Things have changed a lot since then but sadly there are still some for whom the cancer is particularly aggressive and only detected in emergency admissions like your husband....

having just lost my sister suddenly and unexpectedly, I know no words will take away the pain or shock for you and your family. I hope you can support one another through this life changing event.... as others have said, there are routes to get answers to your questions including PALS and the Trust concerned.

Ruth Strauss Foundation offers bereavement support for those affected by lung cancer or you may prefer more general bereavement support through CRUSE or similar ..... ruthstraussfoundation.com/s...

you're all in my thoughts.... take care.