Coping with Husband is palliative

Hello everyone, Thank you for your posts. We were told that my husbands tissue type was not compatible for immunotherapy also he was offered to take part in a research trial (in Bristol) which he consented but was told only 10% chance of having the right tissue type, a sample was sent to Germany but  unfortunately his was not compatible.  The consultant said they would let us know if he heard of any other suitable trials but he has not and his symptoms are increasing. 
We have got a hospice for our postcode who we are in contact with, however it is a day hospice Monday to Friday . Also, the palliative care team work Monday to Friday so I am disappointed we have no out of hours/weekend on call apart from 111 where we have to explain everything to a gp who doesn’t know us. 

Hi Hillsider. Sorry to hear you are both going through this too. When did your partner have his second scan and why? I'm trying to understand how different hospitals work as my trust doesn't offer any follow up scans after the post treatment PET. Thanks

gentlewaves I am so sorry to hear this, it isn’t until you ate caught up in Cancer that you realise who different every case is.  
Colim my partner is having his treatment at Ninewells in Dundee and I can say that they have been fantastic with treatment not changed at all due to COVID. I just assumed that a follow up scan was routine. His first scan was just before Christmas and the second in December. At the first one some scarring tissue in throat was seen but the consultant took Colin and looked with the camera and was happy it was just scarring. at the February scan we just thought it would be a confirmation that all was good as he had been eating better and feeling a bit better and looking forward to getting his Peg tube out.  It was a blow to all including the cancer team that it had spread.  I guess he must have tissue that can cope with Immunotherapy so we battle on.

I have heard great things on hear about the team that can help so I would say contact them and you will get all the support you need from the other member on here.  
liz

Thanks for that. They tissue type to see if the cancer has certain markers that make it susceptible to immunotherapy. Good luck and I hope he remains well.

Thanks for your reply. They do regular scans here and it was a blow to us and the team here as his throat cancer had gone but it had metasteses to lungs. Currently he has lost his voice which they say is due to the tumour in his lungs pressing on nerves and the laryngeal nerve causing a cough and loss of voice, they will give steroids to see if this helps. Dealing with cancer with a loved one is certainly an eye opener and horrendous experience. Good luck to your partner Colin with his ongoing care take care xx

Hello, I hope you are ok. I just wanted to let you know my mum has Osophageal Cancer which has spread to her lymph nodes, lungs and spine. I'm really struggling too so if you ever need to chat I understand how your feeling. She also has never smoked it all feels so unfair. Sending you a massive hug x