Hi everyone,
I'm new to this group. My husband was diagnosed with tonsil cancer at the start of 2023 and underwent chemo and radiation which cleared it, but his follow up scans showed secondaries in his lungs. He has been put on a course of chemo, once every three weeks and hash ad two cycles so far, but he is really struggling with his breathing and not showing any signs of improvement, rather of deterioration. No one seems to want to tell us where he is at or what we can expect. He is convinced that he will not make it to his next chemo session, in three weeks time, he feels that bad. I don't know what to do or who to turn to. Our family are brilliantly supportive but as much in the dark as we are. His consultant seemed to think that he should be good for all sim cycles of chemo, but when can we expect to seem some improvement? He is almost 68 and apart from cancer and arthritic knees, fit and healthy. He seems to have given up, he's nto eating and he's stopped coming downstairs.
Hello suc56
Welcome to the Friends and Family group.
I am sorry to hear that your husband has developed lung secondaries after all tonsil cancer. It must have been devastating for you both after he went through all the chemo and radiotherapy.
It must be hard to see him so unwell from the chemo and for you not to be getting the information you need.
Was he given a 24 hour cancer helpline for his hospital? It is worth phoning this and telling them how unwell he is feeling, that he is not eating and does not feel able to get up and is struggling with his breathing. I called my helpline several times during my own chemo and was put through to a nurse straight away who was able to give reassurance, advice, organise medication and get me into hospital when needed. He's really poorly at the moment and they would want him to get support.
Has he got a CNS/Macmillan support worker? There should be a number on some of his paperwork. On mine there was also the details for the consultants secretary- if you need it. Sometimes I emailed the secretary and then the consultant contacted me directly.
Also you could contact his GP and ask for advice and if needed for him to be seen. Although he may well be referred back to the hospital- it is another person who is asking for him to be seen/given support.
If talking it through first would help then why not give the Support Line a call and speak with one of the nurses. The details are below.
It is really hard with chemo, that you can be normally fit and well but the treatment makes you so unwell- I know from my own treatment- but do please give them a call- I am sure there are things that they can do that will be of some support. For me, just being reassured that how I was feeling was to be expected and it would pass- did help.
I hope that you can get some answers and some support and that your husband feels less unwell soon
Jane
