Devastating impact of lung cancer, in shock!

I to lost my dad to diseases in the lung. He was 56 yes old now my Mom has stage 4 lung cancer she is very frail barely eating.  This is the hardest thing to go thru my Dad walked in the hospital and was gone a week later.  My Mom is harder watching her suffer b and be in pain is so much more  difficult than my Dad.I'm so sorry for your loss I know how you feel the void is hard. I pray for you and let God confront you thru this hard time.

Hi November81

I feel so close to your pain right now as my story seems so similar

We too lost our Dad on the 13Oct only a few weeks after diagnosis

We too were in Majorca at the end of July , when Dad started to feel unwell

After our return it was as though he was on a horrible downwards descent

I started to go on this site for good news stories, after receiving his diagnosis of stage 4 inoperable, and tried to stay positive and Im sorry to others that are looking for hope ( of which for some there is) but my Dads decline was so rapid and cruel it was beyond our comprehension

He never got the chance at treatment as  it took hold too quickly

I now look at all the missed chances to diagnose - like the repeated courses of antibiotics and unconcerned doctors at his GP - who should have ordered earlier CT scans , instead of him going to A & E for x rays that dont show tumors in many cases

I know this does not change the outcome, so I need to forget this

Dads funeral is Wednesday and I need to look for positives in our future and look after mum

Im sorry for my black cloud rant

And I hope that you and I will gain strength and positivity back really soon

Michele x

Michele,

Please don’t think that  a misdiagnosis needs to be forgotten as you have so many questions that need answering.

Yes it won’t change the outcome but it will stop this happening to other families.

I am investigating my husband to be’s medical notes Via the nhs now as he was told he had cough syncope in March , then diagnosed with a 7cm lung tumour in June, he died suddenly in July. something was missed.

It will be hard but it will try and answer questions you need answering, for your family.

Hugs x

A point well made by Joshbosh.  I would recommend everyone to keep a diary of any medical appointments and to get copies of any scans or xrays.It also helps with second opinions.

Joshbosh, did your husband to be have any imaging done to confirm syncope? I was told many things on my way to get a diagnosis,, most of them made me angry as I knew that there was an underlying condition.  I have heard from others that had a similar experience.

Hi Michele                                                                                                                                                                                                                          I can understand your black cloud rant ,i lost my husband in August and he was diagnosed  with lung cancer with unknown primary in November 2016 after being told he had pneumonia for weeks and keep being sent home without a can .He had chemo in January and then in May kept telling the doctors and oncologist he he severe headaches and pain in his neck .They all kept saying it was his blood pressure even after being admitted to hospital several times with loss of speech and confusion ,going dizzy and falling.I later found out all these symptoms are signs that the lung cancer had spread to his brain which is common  in lung cancer.We were finally told he had brain mets in July and said he could have radiotherapy.but not for a couple of weeks Then in August he was really poorly and i was told his brain was inflamed and he did not have long,His last week of life was horrendous ,he wasn't given his pain relief on time and he was in agony all the time .I was begging for his medication all the time and they kept running out of it.I had a week of this .I can't come to terms with his death because of the way he was treated and i feel so guilty.                                                                                                         Vicky.x

Unfortunately yes he had chest X-rays in March and was signed off for a month as kept passing out when coughing. On June 02nd he went to see hospital for swollen face but they dismissed as allergy, by June 17th he couldn’t see out of his eyes due to swelling, this was caused by a blockage to his superior vena cava due to a 7cm tumour. 

He also had pneumonia 3 times since 2014, each time had X-rays. Seems no good me put two and two together until it was too late.

We were semi lucky in the fact we never saw what cancer can do to a person. When Simon died he was fit and well on the outside but the tumour went into his aortic valve and he went into cardiac arrest. Nothing could be done as he died  within 5 minutes. 

But we never got to say goodbye to him, my last words were “ pull your trousers up” as he was bleeding over the sink. I never thought for one second he was dying, it happened so quickly.

I have obtained all his hospital notes, X-rays, mri’s through pals at the hospital. It’s the local Doctors that are blocking me with all the other notes from when he had pneumonia and cough syncope. 

I have a list of questions that I am putting together for the hospital that they are more than happy to answer. They have been very helpful and it only takes a few forms to obtain medical records.

I would advise anyone with unanswered questions, doubts to do this with help. I have no one but my kids now so I am doing this myself and sometimes it’s very hard. But I do it for Simon’s life that he should still be living now x

Hi Joshbosh, you should be able to get the medical records through a Subject Access Request. One thing that surprised me was that the doctors had documented what they wanted and not what I said. For instance, my concerns about weight loss were translated to I felt very anxious and wanted something to make me worry less, nothing mentioned about weight loss. They will also discount the two years of symptoms as being related to the illness. It is no wonder that lung cancer is often found too late.

Did they ever get as far as saying if it was small cell or non small cell? Some of the symptoms seem to fit with small cell, but many people will tell you that it could not go on for two years.

I hope that you are successful in identifying why the experience was so bad and maybe someone influential will be able to change things for others.

Good luck

Rob

Simons lung cancer was finally diagnosed on the 6th July as non small cell cancer stage 4 but confined to lungs and lymph nodes, not spread to liver or brain etc. With a 12 months prognosis. But he died within 3 weeks. I’m angry that they didn’t spot it sooner, or be concerned that the pneumonia or cough might be something else.

I’ve applied via the correct channels for his Doctors notes and X-rays at localnew doc centre, once they requested will, probate etc but we didn’t have time to sort all that so I sent them a letter stating I was his partner for 25 years, no will, no time but not heard back as yet. We will see. He was only 44 and we were due to be married in August, so it really makes it bitter sweet.

Thank you x

Hi Michele,

I am so sorry to hear that you are going through similar to what happened to us. 

There are still so many questions and what ifs, but my mum doesn't want to take it any further and we have to respect her decision as nothing we can do can change the outcome. 

A lot of comments here and elsewhere have confirmed the difficult journey that many people suffer whilst fighting this terrible disease and whilst there are some amazing stories of hope and people surviving the odds,  there are also many stories of difficult times. When I feel low, I try and think how I am thankful that he didnt suffer except for the last couple of weeks and we were spared watching him go through many months of decline.  

Please try and take some comfort from this at such a horrendous time for you.  I hope you give your dad an amazing send off and take comfort in meeting people that loved him and can share memories of him. This still keeps me going even today, how loved he was by everyone. I will be thinking of you tomorrow and wish you all the strength and positive thoughts for you and your family.  

Take care, November81 x 

Thank you for your words

Im so grateful

Michele x