Feeling lost

FormerMember
FormerMember
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Hi everyone,

Im new here, and im sorry if ends up a long post  my husband of 28 years was diagnoised with stage 4b Squamous cell lung cancer with lymph nodes & Adrenal gland involvement in early October last year. He had ridgid broncoscopy to remove what was almost closing his right broncal tube and had stent fitted. 

He was told his Regime would be a 21 day cycle of Pacitaxol, Carboplatin & Pembroluzimab, with chemo his prognosis was maybe a year, had his 1st chemo early November which put him in hospital seriously poorly, side effects  psudamona infection & pneumonia 5 days later for 2 weeks. 

Since then each time chemo was due he felt too weak or had infection again. We saw oncologist again mid december & i asked what prognosis would ne without chemo as my hubby was thinking hatd about having any more. I was told 6weeks- 6 months who knows.

Last week while an inpatient for IV anti biotics he told Oncologist that he doesnt want Chemo, just quality of life for as long as possible. Oncologist said it will be natural progression now.

We now have Macmillian nurses involved, came yesterday and coming back 3rd Feb, all seems okish at the moment thankfully, coughing, legs feel weak & tires easily

Ive been off work almost 3 months now and ironically im an HCA at the cancer center at our local hospital where my husband was diagnoised, just so unsure when to go back to work cause the prognosis is unclear really. 

Any advice or info would be appreciated please. My head is spinning.

Alli

  • FormerMember
    FormerMember

    Dear

    I am so sorry to read of your husband diagnosis, but totally respect his decisions regarding stopping chemotherapy. It’s good to hear you have made contact with your local Macmillan nurses as they will be invaluable to you on this journey. I personally attend my local hospice on a once a week basis, I do it mainly for emotional support and the fellowship of other patients, and as the carer you can also receive support there as your welfare is also very important in all this. As for prognosis, as you have found during your discussions with medical doctors it’s hard to predict outside of certain limited parameters, so all you can really do is monitor things on a week by week basis and look for signs of disease progression, the palliative care team are the experts as far as this is concerned. There is some evidence that patients who engage fully with palliative services live 25% longer than those who don’t, and they experience better end of life care which is beneficial to their nearest and dearest.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Jane thank you so much for your reply & your suggestion. Hope your feeling ok.  Its the not knowing, my husband is brave & i think for him he made the right choice, we almost lost him after the chemo. I was looking at hospice for support my husband isnt as keen but hes having a think about it. Luckily at the moment hes doing ok.