12/12/12

12/12/12

(last repetitive date in our lifetimes!)

Ok

 

I’ve seen the future, and its egg shaped.

 

What a couple weeks it’s been, all is well. Second round of chemo (19 days ago) went well, I’ve managed to stay out of hospital, I haven’t been sick and I’ve still got clean knickers. Bonus. In fact I’ve been feeling so good in myself that I’ve not had time to stop and write about how I’m feeling, which is good, as this blogging is here to help me when I need it, so maybe I’ve not needed it. Never the less it’s good to put down in words the positive sides too. As concerns the positive side, I got visited by Mark a couple of Thursdays ago (at one of our regular gatherings, with the all the usual Thursday night crew) and I have to say how amazed I am by the level of strength and support my friends have given me. I had already been elevated by the previously mentioned spontaneous barnett carving of thing 1 and by the knowledge of Mark and his sacrificial facial follicles for cancer research but I wasn’t ready for the strength that I have since received from being greeted by, not just Mark but Steve and Karl too as the three of them turned up at my home sporting the, all new, egg head look. I had not realized that others were jumping on the idea of Marks, to raise money, but why the heck not. And the fact that these guys are willing to have a really, REALLY, cold head so that I’m not the only one, is one hell of a thing. A thing, that has given me a massive boost. Thank you egg-heads.  Mark managed to raise close to £700 (fabulous) and I understand that Karl and Steve both managed to raise somewhere between £200 – £250 for their chosen charities, Well done, the cold head and embarrassing “survivor ward” look has definitely been worth while.

 

So, what else has happened?

 

On the 28^th of last month I traveled to Poole, to the hospital, for a state of the art molded plastic face mask. Made to measure, this thing is a true representation of my head and neck and goes from the top of my head down to just below my nipples. It was very quickly made, it started out as a flat 2 dimensional plastic sheet (with holes in like a baby blanket) shaped, just like any old head and shoulders, then it was heated with hot, not scalding water to make it pliable, so it could then be forced down over my own head and shoulders by three members of staff, who all took it in turn to rub this plastic sheet into the contours of my body as it cooled (which was not unpleasant). This mask is to be used in conjunction with the radiotherapy machine, to hold me still so that only my tongue gets beamed with radio waves and not my brain by mistake.

 

The following week, I had a further 3 visits to the hospital, the first, to see the dentist that ordered the removal of EIGHT of my teeth, he’s a courteous fellow with a trusting face so I cannot stay mad with him over his decision with regards to my mouth, after all I could have brushed my teeth more regularly. He was pleased at how well and healthy my teeth and gums looked, which is good news to me, as this means I don’t have to loose anymore. Phew, I’ve just got used to chewing on less teeth and the good news is I can still eat steak. Nom, nom, nom.

 

The next day came along and I was back there again, this time to have the thing that I had been dreading most, the percutaneous endoscopic gastrostomy (PEG) feeding tube. Why I had been dreading it, I don’t know, it’s not as bad as having a pipe threaded through the network of veins and arteries to just above your heart, and I have one of those already. I think the reason I was not looking forward to this procedure was the fact that they would have to place a camera down my throat to my stomach again and I really didn’t do well with that first time around, I have quite the sensitive gag reflex and having this hosepipe sized camera fed down my esophagus causes me most amounts of distress and retching, retching to the point of bile and stomach lining joining me on the examination bench. Not nice, but this time, I was prepared, I had spoken to my team of health care professionals about my inability to survive an endoscopic examination, without seeing my last meal again and it was my oncologist that suggested that I let the team carrying out my PEG insertion know that I would not be able to go through this procedure, unless I had a little help, and to ask for Midazolam. He told me “it’s great, you won’t know a thing about it” so I asked for it, and I let the team also know about my previously mentioned 20year old habit (which I know can make a difference when it comes to dosages and pain meds), so the team involved with the fitting of my new feeding tube asked me if they could get access to my PICC line and chose to give me the required amount of said Midazolam with a shot of Pethidine for the pain. I woke up on the ward nearly 2 hours later, PEG tube fitted, no problem. They warned me it would get sore as the pain meds ware off and asked, “do you have Oramorph at home?” “Yes I do”  “take it” they said, so take it I did. Wednesday came around and in the morning I had, what can only be described as an opium hangover, it’s like a beer hangover but it was soon gone thanks to a couple of paracetemols with added codeine. On the plus side, since last Thursday I’ve not taken any pain meds at all. Which must mean, round 2 of the chemotherapy has done some good as I no longer have the head ache that prompted me to visit the doctor back in June of this year, I can only surmise that this must mean, that the tumor in my tongue is shrinking.

 

Friday the 7^th and it’s time for the, oh so familiar, trip to Longfleet Road (Poole Hospital). This time for a visit to the dental team again, not for extractions or examinations but for an overdue visit to the hygienist for a deep clean and polish. This is something that is not alien to me, I have seen 5 or 6 different hygienists over the years and although the end result is always the same, nice and clean (but not quite pearly-white) teeth, their techniques can differ so much that the level of pain they can inflict on my gums varies significantly and I am happy to report that as well as my dentist at Poole Hospital being very thorough, the hygienist was very careful to only scrub my teeth and not my gums with the high powered sonic water jet thingy.

 

The days that I have not had to travel to Poole have generally seen nurses travel to me. The 6d Handley district nurse team is excellent, well the ones I have met, Sarah, Holly and Caroline, but I am certain the rest of the team is just as a accommodating. They are more than happy to work around all my other appointments, finding the right time to come to me and give me a line flush and a dressing change and it is very reassuring to know that they are there, just a phone call away if I need them. Other visitors have included specialist nurses too, a cancer care nurse, Linda (she was the one that my beautiful wife rang when I had a bad reaction to the 1^st round of chemo and she told Bx to get me to the hospital, good call). Finally, but by no means least is Michelle, a nutricia nurse, it’s her job to make sure that my new PEG tube is all ok and that I am confident in using it, when the time comes for me to have to use it.

At the moment I don’t need to use this new “borg” implant (Star Trek reference) but they say that I will require it from around week 4 of the radiotherapy, possibly from week 2 (coincidentally that will be the start of the new year) as my saliva glands shut down along with my taste buds, swallowing muscles and worse case scenario, my voice. It’s then when I will have to use it to keep my strength up, resistance is futile.

 

So that’s about it apart from this Friday coming, the 14^th of December, this is the day of my simulated radiotherapy before it’s all due to start next Monday the 17^th  (which is also the day a great friend of mine has to bury his father, may he rest in peace and may the day go well). This next coarse of treatment will be for six and half weeks of daily commutes to Longfleet Road except for Christmas Day (my fathers birthday (no, he is not Jesus)), Boxing Day and the weekends. I am to have chemotherapy too for 1 day each week for five of these six and half weeks, here’s hoping the small amount of beer that I have been drinking can still be drunk to keep me feeling well enough to want to eat. Oh roll on the end of January.

 

A long entry to this blog I know, but it has been a while. Maybe it won’t be so long before I do it again, maybe it will. Just in case, Merry Christmas and season’s greetings to you all.

 

This is me, Steve Royal. Positively radiant and looking to “well” to have cancer (I know this because that’s what people say).

 

Have a Week.