Getting worse, seems like no end in sight!

[Jen]

Hello All It's been the worst week of my life! My partner is getting worryingly worse and treatment finished a week ago. His Radiation Oncologist has taken leave due to ill health and the clinic that he was a patient in is not returning my calls! He hasn't even been referred to another radiation oncologist. He's under the care of an amazing chemo oncologist (thank goodness!) and heading into his sixth week in hospital. Infection has set in again - unknown origin and he's been on an IV for the past two days with antibiotics and in between times, saline to keep his veins open as he's running out of injection sites. The past two weeks his liver function tests have become progressively more 'deranged'. The Chemo oncologist is trying to find a gastroenterologist to come and see him as he doesn't know why this is happening. He's changed some meds and done various tests but doesn't know what's going on. His pain is getting worse and he's whacked out on morphine and sedatives, he's in a near vegetative state and will be until the pain subsides. That's probably a good thing but it's sad to see his personality disappear. I assume he probably won't remember much about his treatment and what's happening to him. I feel exhausted too. I spend all day with him helping him PEG feed and with his meds and keeping it together for his sake. I've found strength I didn't even know I had but my depression and anxiety is suffering. It seems as if there is no end in sight. I knew this would be a tough time but wasn't expecting all this to happen. It worries me that the Dr's and nurses don't know what's happening either. Does anyone have any suggestions? I feel very alone and want to help him as much as I can but I'm unsure of what to do anymore and who to turn to and what to expect now. He's in a good frame of mind amazingly. He's very tough mentally! Very stoic! This was meant to be curative treatment for throat cancer but now I just don't know what the prognosis might be. It'd be easier to know what to expect but maybe I'll just have to ride this out and remain hopeful. Thanks if you've read this far! All the best to everyone out there going through this, or having gone through this. You're absolutely amazing! Jen

[Paulpwtierney]

It may not seem like it but treatment is progressing. My psychologist used to like drawing a road when I came in and drawing my attention to the next " house " that I was to stop at. It didn't seem to help much at the time but in hindsight now I realise that I was progressing. Albeit in a somewhat vegetative state at times. It is now nearly a year post treatment and last week I allowed myself to utter those words " I beat cancer. " I realise that we can be hard on ourselves during treatment rather than kind to ourselves. We are going through an extremely difficult time and feeling very poorly is only to be expected. It also sounds like you might not realise this but you are meeting your own definition of amazing. You are helping with the PEG and meds and probably other things you don't even think of. You are coping. This is no small mean feat. I don't know how to say this but where you are now sounds pretty normal to me. My suggestion is just to try acting normal around him and have normal conversations. It might not seem like it but he can start to lose too much contact. I hope he has friends and colleagues who are ringing him with stories of people that they both know. I hope he can still laugh.

[Jen]

Hello. Many thanks for the reply. It means a lot to me! It has made me feel a lot better about what's happening. My psychologist has allowed me to vent and that has been helpful but hasn't given me any coping strategies like yours did. He has said though that my partner isn't as fragile as I seem to think and that he won't 'break' if I have a bit more 'me' time. That helped a lot having someone say that to me. I think because of all the complications my partner has had my sensitive and worrying nature has been exacerbated. I've now come to a point of acceptance about everything that's happening. It's the new 'normal'. I am able to do things I never thought I'd be capable of doing without bursting into tears and that's something I am quite proud of in itself. It's a bit of a cliche, but there have been some good things come out of a bad situation. It's not nice but as you say it is 'normal'. I think because I'm in a regional area it's been a bit tougher for me as I don't know anyone who has been through a similar journey and I haven't been told about the complications that my partner is having. It seems as though the professionals are even a bit concerned about some of the complications and that's what worries me the most. The health system seems to be 'broken' and that has made things more difficult. There's no radiation specialists for me to ask questions of. I will be following this up this week coming though and perhaps get some more answers. My partner is keeping in contact with some of his friends. He didn't want many people to know that he has cancer but living in a regional area the word has spread, as it often does. It's not nice to hear it seems to be a valid topic of conversation for people but we have accepted that there are some small minded people out there. He's not able to use his voice very much due to pain but I'm sure he will make up for it when he's better. I've been sending text updates to his family and close friends at least weekly and when we get news about anything new. Laughing is indeed important medication and he has a good sense of humour which is great. We have been watching some comedic tv, just half hour episodes as he hasn't much concentration and falls asleep easily because of the fatigue and meds but it!s something at least to take our minds of medical matters. Well done and congratulations on being cancer free for a year! It's a big milestone and I hope that you are celebrating! Thanks so very much for your response and I wish you all the very best and hope to hear continuous good news for you! Thanks Jen