So far, so good

I've been home for a full week now and things are largely under control if I ignore the mess everywhere. Boxes and boxes of tube-food, machinery with wires all over the place, dozens of packages of medication.... But it's good to be in my own four walls and I'm settling into a good routine now.

My first check-up at the hospital since leaving it was this afternoon. Everything seems to be in order and healing slowly. It's still too early to see whether the leak is closing properly or not but the indications are that things are moving in the right direction. I have the weekend to myself and then I have the second oncology session on Monday.

I took a photo of myself this afternoon, thinking that I'll be able to look back and laugh about it in a few months' time.

The next appointments on the list are with the oncologists on Monday - no doubt the next dose of antibody treatment - and then the speech pathologist on Wednesday to try to get the "TruTone" electronic speech aid under control. You can see how good it is once you become proficient at using it by calling it up on YouTube. Just enter "TruTone" as the search word. If I can become that proficient within the next couple of months, I shall be most pleased.

I intend to get back into working mode from 1st March, although very selectively. I don't want any professional stress now - I've got enough to deal with medically - but I also need the income and am missing the job as a freelance translator. It will keep me out of other mischief....!

That's it for now. Thank you for all the supportive comments here and elsewhere. I have been very selfish these past few months. Although I've been reading the postings on CancerChat and a couple of the other blogs, I haven't contributed to any of them. I hope that will gradually change now.

All the best to my many fellow sufferers.

Back home

I arrived back home yesterday evening. It's wonderful to be back in my own four walls, although I must say it's hard work keeping up with all the medication and drip food and everything else. I now regard myself as a professional full-time sick person.

I am very tired and very weak, but that was to be expected. I hope that I'll be able to get a bit fitter in the course of time. I've had the first dose of antibody treatment against the cancer. That went well and I didn't have any negative reactions to it. Now I have to go back to the hospital on a weekly basis to keep everything under control.

Too tired to write any more for the time being.

Three days to go

Hello, everyone

It's now OFFICIAL - I will be going home on Friday after a session with the oncologists. Everything is falling into place all of a sudden. The stitches have been taken out this morning. I've been giving a speech gadget to play with for a couple of days but there's a much better one from America that should be here tomorrow. Apparently, once you get used to it, you can put a bit of "melody" into your speech so that it doesn't all sound monotonous. Pete is collecting the machinery from the Lung League so that I'll have all the necessary equipment with me when I go home. The home nursing service is being organised (including a bit of help with the housework which is also paid for by the sickness insurance).

So although I'm underweight and it will take me quite a while to get back to "normal" (or as close to it as possible), I'm feeling excited and confident. The last three days here will be to get everything packed and to get myself ready for the outside world again. It will seem quite odd after five months in this place.

Perhaps there really IS a God

I had the best news this afternoon that I've had since last September. Professor Knut turned up (he's the head of the oncology department). They've looked at all the options and have come to the conclusion that

a) they don't need me to be transferred to their department and stay for a while;

b) it might be possible to avoid chemotherapy altogether.

Point b) really pulled me up in my tracks. I obviously asked why. Knut (pronounced K'noot) said there's a cancer stopper which uses antibodies based on protein. Don't ask me to explain that because I don't understand it myself, but I was assured that it works very well without any side effects except that I can expect to get a bit of acne from it. If I do, it's actually a good sign because it shows that the antibody is working efficiently. If, for whatever reasons, it fails to reduce the cancer and block it from growing any further, they can still go for chemotherapy either together with or as a substitute for the antibody treatment.

Knut said "As soon as they've finished with you here, go home and have some fun in your own environment. Dr. Huber will let us know when you're about to be released and then we'll set up an appointment for you to drop by to begin the treatment. It can all be done on an out-patient's basis and you can tell us when the best times are for you to come by so that you're inconvenienced as little as possible."

CHRIST......... I almost kissed the fella...!!!!!

So now I just have to wait for the ear-nose-throat people to finish with me here and then I'll be off. It was such wonderful news that I became a bit emotional once Knut and his assistant had gone and I was alone again in my room. At long last, after so many disappointments and broken promises, things are finally looking up and if this antibody treatment really works the way it should, it could keep me alive for longer than has been indicated until now.

I'm waiting now for the Servox gadget to be supplied so that I can start speaking. Pete won't be too happy when he visits me this evening because another thing that has been organised is that he will have to go to the Lung League with his car and pick up a suction machine, an inhaler and a machine to dampen the air. Then he'll have to bring them all here to the hospital so that I can be told how to operate them. And then they'll have to go home with me when I'm released. I'm sure he'll do that for me. He has been an absolute star all along.

Pete will be bringing another three boxes of chocolates with him this evening. The nurses all appreciated the last offering. In fairness, despite all the problems and broken promises from the doctors, the nurses have been very good. There is one I can't get on with. I call her Tinkerbell because she's got that extremely irritating tone of voice and talks to me like I'm either three years old or mentally handicapped. I hope she doesn't get to share any of the chokkies!!!

My skin problem has virtually cleared up. I can now look in a mirror again without getting a fright. The scalp also feels better now that I'm using a special shampoo on it.

On the whole, this afternoon has restored my belief that it will all turn out well in the end.

Loads of uncertainty

It has been a very quiet weekend. I've spent most of it playing over 40 games of online chess against opponents from all over the world. That made a nice change from TV or DVDs.

I'm afraid the dreaded cannula is back in again. The "Larry Tube" which went in as a place-holder didn't work out - it allowed too much fluid to flow back towards the lungs, and that's a no-no. So I'm stuck with the cannula again for the time being.

I also can't swallow. Despite the test, that leak is big enough to be a problem. I have to wait for it to close on its own (if it does). The surgeon assures me that it will, but it could take up to 4 weeks, and until then, I shouldn't risk swallowing anything because part of it will spill out into the body with unknown but potentially nasty consequences.

Despite all that, it looks as though I might be released this coming week. I have to wait for the oncologists to make up their minds. I expect to hear from them tomorrow (Monday). They originally said they wanted me to be transferred to their department for 5 days for chemotherapy. I would rather go home for a holiday and have the chemo as an out-patient, but that all has to be discussed and agreed.

So it's all somewhat up in the air and uncertain. I know I have to have the chemotherapy to keep the cancer in check but I'm so sick and tired of being in hospital after 5 solid months that I can't wait to go home, even if it's not an ideal situation. There's so much that still has to be done (starting on speech therapy with that electronic gadget which they still haven't given to me, having half a million stitches taken out of all the scars, organising the equipment I'll need at home, etc. etc. ad nauseum).
This coming week promises to be eventful, to say the least of it. I might well be home before next weekend, but as I've said, it's all very uncertain.

To swallow or not to swallow

The swallowing test got postponed until today. It was just as well that there was a mix-up regarding my appointment for yesterday because for most of the day, the power supply kept fusing (no doubt caused by the construction workers). Every time it did, all the lights and everything went out for a second or two until the emergency generators took over. So heaven knows what it was like in the operating theatres. I imagine the surgeons were tearing their hair out.

Anyway, at 1030 this morning, I was transported through the underground labyrinth once again and wound up in a remote part of the hospital where all the x-ray people earn their daily bread. No windows anywhere. It must be a morbid existence.

They made me lie stretched out on a narrow bed with a platform for the feet. Then the whole construction was moved hydraulically from horizontal to almost vertical (which is the reason for the foot platform). A large x-ray disc is manouevered into position directly in front of your nose - certainly not fun if you're claustrophobic. And then they make you drink a little container of contrast fluid and take dozens of x-ray shots as it goes down through your body.

The outcome this morning was that on the one hand, none of the fluid was able to find its way into the windpipe, which was the main worry. From that point of view, it's working well. However (there's almost always a "however"), whilst most of this fluid went the right way and flowed nicely through the substitute oesophagus, there's a tiny leak somewhere that's allowing a little fluid out of the tube. That will have to be corrected. I expect Dr. Huber will be here within the next few hours to talk about it.

Even though there's still a litttle bit of tweaking to do, it was a marvellous feeling to be swallowing fluid for the first time since last September. I imagined it was Best Bitter although, of course, it was 99.9% pure water.

I might have to have a visit from one of the dermatologists. My entire face is now extremely flaky, and neither E45 cream nor anything else appears to cure it. Personally, I think I'm short of vitamins. Anyway, I shall get something done about that.