Hi all,
New to the group and just looking for some general advice.
My 80 year old father in law was treated for bowel cancer 5 years ago - tumour removed and chemptherapy for approx 6 months by tablet. We always knew there was a chance that it would return and about 2 years ago a little node started to grow in the pelvic areas. He had targeted radiotherapy which worked, however it did cause damage to the ureter and he also now has a nephrostomoy fitted. Since the surgery he would get the odd bowel blockage and in June of this year he was admitted to hospital for this reason. However a CT scan of his chest showed nodes on both lungs. We don't know how long they had been there as all his previous CTs focused on the pevlic and abdomen. The doctor advised that they were around 9mm in size. We were fortunate in a way that this was discovered a few days before he was due to have a routine consultation with his oncologist, so treatment was started about 4 weeks later. We are aware that it is not a cure, although no-one has asked for a timeframe. I would prefer to know so that we can be prepared, but my partner is struggling mentally and emotionally to deal with what is going on so does not, nor does his dad. We are the only carers for his dad, and have no help apart fromt the district nurse coming to do dressings, PICC flushes etc, so our stress levels are extrenely high right now.
I have asked my partner to speak to his GP but he won't. I have tried to get hm to meet his friends in order to have a sense of normality but because he cant face people asking him how things are, he won't leave the house. We haven't been able to get anytime on our own as we are too nervous about leaving his dad alone. As well as the issues above he is also diabetic, has frequent dizzy spells so we are concerned about him falling. The nephrostomoy also increases his infection risk (he wa hospitalised in Feb of this year with a severe infection for 2 weeks), and obviously the risk to him is more severe at present. I don't know how to go about looking into respite care and to be honest, given the situation wih Covid, i'm not sure we would want to put him in anywhere right now. It's just proving to be difficult balancing work, hospital visits, his low sugar & low residue diet and my partners mental health.
We have also had issues with the unit administering his treatment. The PICC line kept blocking so we were having to run to the hospital everytime the district nurse couldn't collect blood (couldn't get it from veins either) and 3 times were promised a linogram but it never happened. Finally last week they decided to go ahead and the PICC was moved to his left arm. He had his last treatment on Thursday past. and as usual was sent home with the pump to administer his 5FU over 48 hours. I checked it on Friday night and the balloon did not appear to have deflated any and the same on Saturday. I called the 24 hours helpline which was pretty useless since there was no on call oncoligist to advise and a nurse asked that dsitrict nurse attend as usual just to check there was nothing wrong. When the nurse arrived she said that nothing appeared to have gone out of the balloon and after some ringing around, and speaking to an oncologist in a different hosptal, she was told to disconnect as usual. I spoke to his cancer unit this morning who said that they were aware of what happened, emails had been sent around the people who needed to know but that there was no plan to give him a replacement as it could mess up his next cycle. She told me that he also gets 5FU as part of his IV treatment and the bottle is simply a top up, only 115ml. She also started it wasn't detrimental to him not to have received it but I'm not convinced. I can't remember all the names of the drugs he receives, I know Cetuximab is one of them but she said it was more vital that he receive the treatment he's meant to in the unit. She did say that sometimes the bottles can be faulty and that it has happened to other patients.
Given the issues we have had with the hospital over the past 12 months, and i know they are under severe pressure with the pandemic, i just don't know whether to believe them or not right now. Has anyone ever had issues with the infuser at all? Any advice on encouraging my partner to seek help?
Thank you for any advice.
