Mum passed away from extensive SCLC, tormented by what ifs

[Dion]

Hi all, apologies in advance for the long post, and if you've seen this on other forums. I wondered if I could ask for your advice please? My Mum passed away at the beginning of September from extensive stage small cell lung cancer and I'm tormented by what ifs. For background, I’m based in the UK and the following experience is with the NHS.

It all happened so quickly. My Mum went to the doctors at the end of June for the first time, and was told she had a chest infection. Had a chest X-Ray done around then which didn’t spot any abnormalities to do with cancer, but did suggest she had pneumonia. When things didn’t improve, she kept seeing the GP in person and speaking to them on the phone multiple times, and was given antibiotics a number of times.

When her condition wasn’t improving, I took her to A&E on July 15th and she was discharged but had a follow-up CT scan booked for the following week. Took her again to A&E on August 1st which is the date she was admitted to hospital, and was the same day doctors ended up calling with the results of her CT scan.  She ended up being admitted to hospital that day as an inpatient. She had a biopsy done on August 6th, and a stent fitted in her lungs on the same day. But a few days later, on August 9th, she was admitted into intensive care where she had to be intubated. Not sure if this was due to the progression of her cancer, or some complications from the stent procedure. She had one round of chemotherapy while she was intubated on August 14th, and then a tracheostomy done a few weeks later.  But doctors couldn't wean her off the ventilator, and she didn't respond as well as they had hoped to the chemo (her cancer reduced in one way, but grew another). She also had an infection that was related to her stent procedure, and she sadly passed away on September 6th.

I’m tormented by thoughts of whether I could have done more to help my Mum. Specifically, wondering if I had taken her to hospital on the week beginning July 22nd, and she was admitted then instead of on August 1st, whether she would have had a better chance of survival. She called the doctors that week but they didn’t really give her anything.

Do you think getting treatment a week / week and a half earlier would have improved her chances of survival? I have spoken to a number of doctors and nurses about this and they said situation would still be the same, as have people on other forums and people I've spoken to on cancer charity helplines. I think because I've heard about how quickly small cell lung cancer can develop, have kept wondering whether taking her in on July 22nd (instead of August 1st) would have meant she could have had chemotherapy done at a better point / when cancer was at a less advanced stage, or avoided the situation where she had to get intubated.

[Pstar]

So sorry that your Mom lost her battle with this beast of a disease. There is no way of knowing how long this was brewing so seeking treatment a little sooner probably would not have had a different outcome. Do not beat yourself up over this. Thoughts and prayers are with you.

[edivebuddy]

So sorry your family is suffering this horrible loss.  I don't think the difference of a couple weeks would have made any difference.  Small cell is such an aggressive disease, with the average survival of only 2 to 4 months.    

 

[Karen_L]

@Dion, you are going through a very, very hard thing, and I'm sorry for that.  Lung cancer is a shocking diagnosis and the speed of its progression can be mind-boggling. Please try to remember that your mom had the cancer before she began experiencing symptoms in June.

A week of chemo might have gotten the attention of the cancer, but intense illness, such as your mother was experiencing, would require multiple infusions before docs would have even an inkling of whether it was working. It's always a crap shoot; you saw firsthand how chemo simultaneously helped and didn't help.

You have great love for you mother, and while love can help us weather the storm of diagnosis and treatment, it can't affect the cancer itself. We are not accustomed to feeling so powerless. 

You mention you've asked any number of people if your actions might have made a difference, and you've been told no. Perhaps it might be easier to hear this: your actions-- or what you fear may have been a lack of action-- were not responsible for your mother's pain and death. 

Wishing you peace,

Karen