We have lost Barbara

As her carer, I have three issues, on which I would appreciate advice and guidance, after we lost my wife Barbara last month.  Four years ago, after treatment for a series of pneumothorax, Barbara was diagnosed with lung cancer, for which she was treated with radiotherapy, apparently successfully.  She was then found to have secondary cancer of the adrenal gland, which was treated with immunotherapy.  However, a serious bout of pneumonia set her back to the extent that both cancers returned. Offered limited extra life from chemotherapy Barbara elected to return home with a life expectancy of 2-4 months, under palliative care from our local hospice.  After 4 months Barbara was still well enough, even though other medical issues meant she could not get out and about much, to enjoy a reasonable quality of life.  The palliative care team then returned her to the care of our doctor.  He subsequently ordered scans, which showed Barbara was in remission from both primary and secondary cancers.  My biggest problem than was to get the NHS to shift from the mindset of palliative care to proactive care of her other health issues, so Barbara could enjoy an even better quality of life.  This proved a struggle, even with paying for private consultations, when NHS waiting times were against us.  I though we were finally making progress until another very serious bought of pneumonia weakened her system to the point that we lost her.  Now after Barbara’s funeral I have realised the extent that Barbara had influenced the lives of so many people, that I have to decide what to do in her memory.  The first issue is somewhat prosaic.  I had a very robust discussion with the Medical Examiner, who wanted to put lung cancer as the primary cause of death on the death certificate, even though scans after the latest pneumonia showed Barbara was still completely free of cancer.  As a research scientist myself I was appalled at this distortion of data that would be used for epidemiological research, but in the end, I acquiesced so we could get Barbara’s remains released from the hospital morgue.  Should I have fought harder and how do I ensure the Medical Examiner system is fit for purpose?  The second issue is how do I get the NHS to recognise there may be valid reasons to provide proactive care, after a patient has been sent home to die.  Thirdly, how do I get the NHS to recognise that Barbara’s remission from cancer may have important lessons for other patients.  Anyone interested can see more about Barbara’s cancer story here: https://marodyneliv.co.uk/research-hub/cancer-therapeutics/.

  • A very warm welcome to the forum DJMR although I'm very sorry to hear that your wife Barbara has passed away. You have my sincerest and most heartfelt condolences for your loss.

    So many of our members know how just how difficult and heart breaking it can be to lose a loved one to cancer, so you are not alone DJMR, and hopefully you will receive some support and advice from them soon.

    Unfortunately we are unable to answer the questions you've included in your post, but I hope this information I've found on how to make a complaint or give feedback on any aspect of the NHS will be useful.

    We're thinking of you DJMR, and sending all our strength to you at this very challenging time.

    Kind regards,

    Steph, Cancer Chat Moderator