Update on my palliative care

[ginkgo]

I was taken ill last week. Unable to keep anything down which prevented my oral pain relief being effective. I rang the palliative nurses who told me to call my GP. My GP was very attentive and came to see me very quickly (Wednesday). He changed my meds and told me to try the new routine for a few days, but unfortunately I became worse, and especially so on the Saturday. It was now the weekend and GP's and palliative nurses don't work at weekends. I rang the district nurse (I already have the 'emergency' medicine pack available) but they told me I must speak with a doctor, so to call 111. The 111 service requested paramedics come to my home (after answering a monotonous lengthy checklist of meaningless questions). Overall though, it turned out to be a blessing in disguise, as it gave an absolutely marvellous result and I cannot praise the ambulance/paramedics highly enough.

The paramedics were worried about my chest pains but after being told my history they were less worried about my heart but did an ECG anyway, and other tests. They decided to call for doctors advice, but had to wait quite a long while for one to call back. The doctor recommended I be hospitalised to get my medicines sorted out to better effect. I resisted being hospitalised but they went to the trouble of organising me a room at our local hospice and took me there in the ambulance. That all happened Saturday. The hospice gradually sorted my meds, and it was the morphine causing my sickness. I am now on Oxycodone, which is another newer form of morphine, and other meds. I returned home yesterday (Thursday).

I am now nausea and pain free but my limits for exertion have reduced, meaning I need more assistance in washing, etc.

The ambulance men and the hospice staff have restored my faith in the NHS. They all went above and beyond what was expected. Such a pity that some NHS consultants are the exact opposite.

[Hidden]

yes, first responders and ambulance staff are fantastic, I’m glad your home and ok x

[Hidden in reply to Hidden]

I hope you are enjoying your weekend at home, well deserved x

[Elt79]

So pleased they identified the problem with morphine and found a substitute to deal with the pain without sickness. Glad you’re safely back home albeit needing more assistance - I can’t tolerate morphine so good to hear there’s something else. Take care x

[sassassas]

Thank you for sharing this ginkgo . I hope you are feeling better x

[Hidden]

Hi Ginkgo, I hope you’re continuing to do well, sending warm wishes your way x

[Susie215]

I ran across your posts when I did a search for anyone having squamous cell lung cancer. Is that why they said you were terminal from the beginning? I had right upper lobe lobectomy Feb 2023 for squamous cell carcinoma. Stage 1B. Cancer in situ and lot of dysplasia left at bronchial margin. Also 3 new modules just found but too small to biopsy. I was told that if I ever need chemo that squamous cell very resistant to treatments. Is that why they didn’t want to do chemo on you? It is hard to find anyone’s experiences with squamous cell as majority of people have adenocarcinoma. I read all your posts and so admire you positive attitude. I can’t believe how hard you have had to fight to be heard. Does your Dr’s think that you finally getting chemo may have brought on your decline in health? Many prayers sent your way

[ginkgo in reply to Susie215]

Sorry Susie, but they never proved squamous cell. They just said it was a possibility. My early consults with the NHS were terrible and they made me feel that I was a pest to bother them in the first place. I don't know if it was because of covid, but they didn't seem interested in doing anything for me. They missed a big opportunity (in my opinion) when my tumour shrunk to 2cm after radiotherapy with no metastases. They told me I had enlarged lymph nodes, but never tested them and I have discovered that they can be enlarged without being cancerous. They just looked for reasons to do nothing, not even a stent to help my breathing. They sent me home without any monitoring or further tests. After months of making a nuisance of myself I got some chemotherapy, but it didn't work for me. I must add that some emergency care I have received recently has been first class.

I hope you fare better and receive good care.

[Susie215 in reply to ginkgo]

wow I don’t even know what to say. I feel so bad for you. How did they not know if you had squamous cell vs adenocarcinoma? Sounds like they just abandoned you period. I thought it was because squamous cell is hard to treat but you are saying you are not even sure which type you had. A biopsy tells which one it is. I feel so bad for the way you have been treated. I do have medical knowledge as I have been an intensive care nurse for 25 years

[ginkgo]

I requested an xray (9 months after diagnosis and six months after palliative radiotherapy) , as I was feeling very well and my lung capacity improved due to my lung reinflating itself. It showed my tumour (left upper lobe) had shrunk to approx. 2cmhe report said "non-small cell carcinoma, most likely adenocarcinoma with possible squamous differentiation of left upper lobe. "

Thank you, Susie, for pointing out the anomaly. I had a biopsy and that was the diagnosis.

[Susie215]

i sure hope things get better for you