Hi. My husband has pleural epithelioid mesothelioma and recently had surgery as part of the MARS2 trial. He was the last participant recruited on this trial, and we feel extremely lucky in having the chance to take part in it. He had the surgery 7 weeks ago in Sheffield, done by Mr Edwards, who told us it was one of the most complicated of these operations that he had done, as there was a lot of thick and tough tumour. The pericardium and diaphragm were completely removed and replaced by synthetic ones, and a "wall of concrete" had to be chipped from around the lung, but Mr E told us he was pleased with the final result, and that no visible tumour remained at the end of the op, although we know that it will return at some stage. Surgery lasted 11 hours, and he was under anaesthetic / high sedation for 3 days, and then a massive cocktail of opioid, and other, drugs for about another week . He suffered with a lot of delirium and hallucinations afterwards, which can happen in these circumstances. He finally left hospital 4 weeks after surgery, not in pain, but extremely weak and frail. He continued with the physiotherapy exercises he had been doing in hospital, but then started suffering more and more with breathlessness. We saw the oncology consultant yesterday, who has referred us back to the local cardiac team he was uder at the tart of the dignostic journey. Atrial Fibrillation had started in January this year, probably triggered by the tumour around the heart, and this seems to have been exacerbated by the surgery, and causing the problems now. We're finding all this very worrying at the moment, because his recovery progress seems to have stopped. Also, the delirium etc has left him with psychological issues - triggering panic atttacks and depression.
I'm wondering if anyone else has had similar experiences on this trial, as I'm finding it very hard emotionally and physically to cope, as well as him!
Hi Lin T I am a community champ from the lung group, sorry I do not have any personal experience with Mesothelioma or the Mars2 trial, but I can see you have not had any replies yet, so I hope you do not mind me coming to talk to you. Whilst you wait for someone to come along and share their experience with you, I wondered if you might like to look at the other support groups on the online community.
It sounds like you have a lot going on at the moment, you need to take time to look after yourself, whilst looking after your husband at the same time.
Talking to others who are in a similar situation to yourself does help you through this difficult time. There are a couple of support forums on the community you can join.
You will find several people there who are supporting loved ones with cancer. You can also call the Macmillan support helpline for support 7 days a week from 8am til 8pm on 0808 808 00 00
Take care x
