We had an appointment today with Mr ENT. I wasn't overly concerned either as H has continued to progress each week and with little sign of any set backs. So it was ok sitting in the waiting room and my stomach managed to behave itself. It normally turns and churns and adds a feeling of nausea to it just to make it interesting but today it was well behaved.
Mr ENT had a good grope around H's neck and a good rummage in his still very sore mouth but was happy with his progress. We had the full compliment in the room with us today and it was quite like H was holding an audience, sitting in his high chair and everyone hanging onto his every word. He managed to smile too. Speech therapist gave him a good talking to and a reminder of the importance of exercising the mouth although he has been terribly stubborn with these. Why does he not do them, I have no idea and am exhausted from nagging him. I only hope it doesn't come back to bite us in the future.
So we are to be seen every month now. Next month will be a scan. This is to give them a baseline to work with, if in future any thing else pops up. They have something to compare it with. Seems sensible. Nothing to worry about ............... apparently! mmmmmmmm
So we are continuing to get on with our lives as best we can. I am so proud of H's progress. His hair is half gone and his beard is unlikely to come back but he's still here and still getting better. His weight is stable although a full time job keeping those calories going in. He is still mainly using his PEG but that's ok. He has managed a few foods by mouth, all baby sized portions and at least once a day. Weetabix every day which is real progress. Other than that the odd yoghurt, bit of lumpy soup too. Main problem seems to be lack of appetite. He always used to love his food and that's just gone. It isn't the same cooking for someone who is going to take half an hour to eat a snack sized portion but I guess that's just the way it goes. My own eating habits have changed enormously, I eat to get by and eat lots of rubbish too now. I get no pleasure whatsoever from being in the kitchen. I just never factored these changes into the equation but we all have so little control over cancer treatment recovery. It's so exhausting it's easier to just give up some times. I envy slobs at times. I wish I was a slob. Imagine not being bothered about healthy diets and tidy homes. A less exhausting lifestyle for sure. Maybe not.
H's biggest problem is his still sore mouth. I thought the ulcers and burns would be pretty much gone by now but how wrong am I. Still pretty much there. This entirely dictates what is eaten or not eaten. H's swallow is still intact thank goodness but swallowing isn't going to happen too much with great big sores all over the mouth. Just need more time.
The being sick and coughing up blood has finally ceased too. So much to be thankful for. The sticky saliva has now been replaced by a very dry mouth with the odd interruption of a great big sticky ball of saliva that just has to be got rid of. The weird thing is that of all the side effects, not one single one has made my stomach churn, but this one has. He did it today several times in the car and the sound of big gobby blobs of phlegm being coughed up into his tissue makes me urge. Quietly of course, but it does make me urge none the less. H doesn't know of course but I do find it weird. H is trying pretend saliva at the moment, seems that for most people it doesn't really help too much but H has found the tablets quite useful, so far.
And so things go on. I don't feel like the same person anymore. It has taken its toll on me for sure. I feel tired most of the time and seem to have little patience with people, especially those who mean well by saying how well he looks. Well BOG OFF people, he doesn't look well, he looks terrible. He has half a head of hair, no beard, a red turkey neck, five teeth in his head, a tube sticking out of his stomach, oral thrush, mouth ulcers, he's lost a stone, his muscle tone has all but disappeared and he can't go a whole day without falling asleep in his chair. By telling me he looks well you're also telling me that all the worry, anxiety, sleeplessness, dread and fear that I experience every single day is misplaced and an over reaction. Thanks a bunch.
I can't believe we are now seven weeks post treatment, I never thought we would get here. I feel so fortunate for us to be moving in the right direction without complications or immediate worries. Life is ticking over nicely, but I can't help feeling sad too that others aren't so fortunate. My heart goes out to everyone who has their life tainted by this disease. Bring your courage to the table people, we all need it.
