Hi Deb and Bell,

How are you bot?. I just read a post from Trev that suggests you (Deb) will be spending today in hospital. How I feel for you both. Deb and Trev I think its wonderful that you have done so much talking about your fears for the future. Chaz and I did alot of that when he was first diagnosed and he felt he 'had let me down' by getting cancer!

It is really difficult for me to imagine how you (Bell and Debs) can even contemplate a future without your spouses after such amazingly long loving relationships. However I now realise how amazing my mum was when my Dad died of lung cancer at the age of 57. They had been together for nearly 30 years, but she picked herself up and, although she always missed him terribly, made quite a life for herself. I cant imagine that I would be as good as that as I am rather an introvert and have become so dependent on Chaz in the last few years that I don't feel I have a separate identity any more...most weird as I spent nearly 40 years quite happily on my own!

We have had quite a strange week. Chaz finished radiotherapy on Wednesday and we had a long chat with a rather dashing, terribly bright onocology consultant who has been Chaz's main medical muse during treatment. I asked all of the difficult questions about follow ups and pros and cons of post treatment neck dissections while Chaz sat there quietly trying not to choke on his phlegm! It was quite funny actually as I kept citing journal articles at the consultant, but he could counter them all with arguments about possible bias etc. All of this was being witnessed by a younger doctor who was shadowing the consultant and I could almost feel him thinking "shit, I hope I never get a patient with a spouse like this!"

Anyway, the long and short of it is that we will have a check up in about 6 weeks and then they wont do a scan until 12 weeks after the end of treatment. While I understand the fear of false positives, particularly in the treated areas, after reading Angleliques very sad posts, I am still concerned about the possibilities of cancer having spread to other sites pre or during treatment. I feel they should be checking for that at an earlier date.

As it happens, we had an accidental opportunity about three weeks into treatment, when Chaz ended up in A&E with breathing difficulties - think may have been much to do with anxiety. They did a CT of his lung to check for an embolism and, although at the time, he was found not to have an embolism, they said they noticed scarring that indicated he might have got rid of an emoblism on his own previously. At the time I was so glad that they didn come back saying he had lung cancer that I let it go. Several weeks later I asked Mr dashing consultant whether the scan showed anything sinister. He said no there was no cancer. But the scarring is niggling at the back of my mind...was it there at the original PEtscan? could they have got it wrong? I think I will email mr dashing just to ask him to check again as I didnt want to worry Chaz at the time.

3 days after the end of treatment Chaz is doing quite well. His stomache has calmed down and although his throat hurts more now he is still managing to swallow weatabix. Hes quite tired but has started reading the paper again and particating in philosophy debates on the internet which is a good thing. He was due to start a masters in intellectual history last OCtober, supported by an inheritance that meant he had some money for the first time in his life. I think not being able to start the masters is actually the worst thing about his cancer diagnosis.

Anyway we have watched a few good films together and I have carried on with my work in a bid to give him back the sense of normality that he so desperately wants. As he said to the consultant 'its easy to die' - going through all of the tretament and the disruption to normality is what has been difficult for him.

Interestingly, I have ended up taking on most o of the work load for a project I was doing with another colleague as she is in the middle of an emotional relationship crisis which has resulted in she and her partner of 20 years agreeing to an amicable split. They have been together since their teens and oddly enough I have been able to provide her with some emotional support because of all the conversations we have been having here!!!

Goodness isnt life peculiar.

Well ladies, sorry for going on so, but I am making this my cathartic space for now. I do feel I am in a better place mentally and am taking everyday as it comes. Trying to spend as much time with Chaz as possible.

Bell, I do hope that Paul is doing ok and that you are managing all of your worries and Deb, you sound as if you are being a fantastic Rock for Trev at the moment.
I have to go as Chaz is calling for breakfast. He has been coughing up quite a bit of blood (fomr throat) this am. Is this normal post RT? or could it be an infection?
Best
Cathy

Hi Cathy
It's great to hear a new calm in your post. While I was reading I could imagine a scene in a movie...... A small ship is in the middle of the ocean with a couple on board. They have weathered an horrendous storm which abated through the night and in the morning they have emerged on deck to calm seas and clearing skies. There is no wind and everything is quiet ....... (God, what a rave!!) OK, so it sounds corny, but nevertheless, I could feel how much more calm you are.
Is it normal to cough up blood post r/t? Believe me, it's possible to cough up all sorts of treats in varying colours and textures. I remembered just the other week when I was being grateful that r/t to the abdomen is nowhere near as horrendous as it is to the head and neck area, the absolute pain and fear that Trevor had post treatment last year. He would be stamping his feet as he tried to get it up and the pain was so intense. There was absolutely nothing I could do but put my arm around him for support and all the while I wanted to scream out. It was hell but I had forgotten about it. The mind is an amazing piece of work that gets us through so much and gradually takes away painful things to help us get on with life.
You hang in there because Chaz sounds as though he's doing extremely well. Trevor couldn't eat anything til three months post treatment! As for interacting personally or online ~ no way, Jose! He was out cold 18-20 hours a day for weeks. You're both going to be fine.
Trevor's appt today was for 3pm and I think it was about 3.15 when we went through to xray. They got the contrast set up and he was in and out by 10 to 4. Mind you they only just finished the scans when he was violently ill! I think the two bottles of 'stuff' he had to drink in the two hours prior to his scans was just too much for his stomach plumbing. He can only have such tiny amounts these days and whatever he puts in has to drain out like down a plug hole, rather than be moved through by the muscular movement of the stomach. It's a slow process. I suggested he get himself a hula hoop and get some action happening after he puts anything down the hatch and that way he could get the stomach contests swirling away nicely and he'd be empty before he knew it! Funny, he hasn't bothered to do that!!!! I think a hoop would have him black and blue with bruises anyway, rattling over his bones.
So, once again we are waiting for something. Isnt' there always something to look forward to when you're on the cancer trail? Tuesday at 10.30 ish (about midnight Monday for you guys) is when we see the r/t guru.
You keep on keeping on Cathy. Love and congrats to Chaz on his progress. Don't let the urgency you felt just a week or so ago slip from your memory (it will if you don't hold on to it and remember how important every minute was). I know it happens easily when the urgency and intensity of the crisis has passed.
Onwards and upwards
Love
Deborah

Dear Deb,

I love your storm analogy. I think the winds come and go on a pretty regular basis and suspect that will continue for sometime to come.

You do sound as if you are going through such a horrible time at the moment. Its wonderful that you can keep your sense of humour so. Your description of Trev;s stomache processes is very similar to how Chaz felt during chemo. He kept moaning about his stomache not digesting food properly.

I think part of the reason Chaz has more energy than Trev did us because he had unliateral RT that seems to have focused on a very small area of his mouth and neck....great in terms of radio recovery, but something I find alarming. I wish they had been more thorough...

Anyway yesterday he did two DIY fixie things - computers and dishwasher and I sat quietly biting my tongue as I think its good for him to reestablish himself the capable male techie in the house.

Despite this energy, he is suffering from horrid mucous at night that seems to be getting worse instead of better. Have no idea how long it will go on for but I do feel for him as he cant sleep very well and one of the morphy painkillers keeps making him puke.

I shall keep my fingers crossed for you and Trev. Take care and keep your wonderful spirit up.
Love
Cathy