And I’m done ..slightly more than medium though, I think?
Radiotherapy count: 30/30
Chemo count: 6/6
Starting weight: 15st (I managed to put on nearly a stone pre treatment)
Week 1 end weight: 15:2 (its going in, but its not coming out!)
Week 2 end weight: 14:13 (Yep, the senna has kicked in)
Week 3 end weight: 14:4 (my diet is going well… unfortunately too well)
Week 4 end weight: 14:5 (stabilising at last)
Week 5 end weight: 14:2 (dropping but doing ok considering)
Week 6 end weight: 13:12 (still dropping but managing)
Week 1&2 mouth aperture: 50mm
Week 3 mouth aperture: 45mm
Week 4 mouth aperture: 49mm (sorry folks, been doing my exercises)
Week 5 mouth aperture: 48mm (more exercises needed)
Week 6 mouth aperture: 42mm (it’s been a quiet week)
This has been the hardest week so far.
I’m sleeping all the time but my throat is now so sore that it wakes me up every three hours, so I think in the main I am mainly resting with my eyes closed.
My neck has been a source of concern this week, as the lotion I need for it, I can’t apply until I have finished my last session of Radio Therapy (as it contains silver and will impact on the Radio Therapy). But read further on for the whole story on my neck.
And on the day of my last chemo and Radio Therapy session, it all became too emotional at times and I am not afraid to say that on several occasions I welled up in tears in front of people.
Just after I finished Chemo I went round and shook all the nurses hands, then we both went on to my last Radio Therapy and I just broke down in the reception area, this then started my wife off and I must have looked a right wally ,,, but i did not care it was how I felt.
The biggest moment for me was when I was spat out of the Tomotherapy machine for the last time, unbolted, sat up and just lost it. 6 weeks of hard grind, pain, support and friendship I never knew ran so deep, came flooding out. This then started my wife off and we sat there, cuddled in each other’s arms, only for a minute, then got our act together, I went round cuddling all the Radio Therapy girls, collected “bob” (my mask), and left the building.
The summary of my week is as follows:
Fatigue
Tiredness has hit me big time this week, I sleep (or doze) travelling back and forth to hospital and when I get home I watch an hours tv, then I am off to bed, which has been about 9pm this week.
Walking my dogs has also become very trying, but I am determined to do it when I can, but when I do, I have to rest after.
Pain
I have had to increase my pain killers this week, as overnight my throat dries to the extent that swallowing feels like taking down a ball of razor-blades. The trouble is, it’s your bodies natural mechanism to swallow when you are asleep and you we most probably turn over and think nothing of it. But when I am asleep and my body tries to swallow, I am quickly woken by some Ninja who has crept inside my mouth and is constantly stabbing the back of my throat. This action obviously brings me round very quickly and trying to cough the little blighter up is just as painful as trying to swallow him in the first place
Mucus/Phlegm
A new subject for this week and not a welcome one from my point of view
My mouth is no longer producing saliva, but it’s been replaced by a horrible sticky greeny/yellow slimy substance.
I do try to extract this viscous material from my mouth, but it’s like Spiderman’s web substance, it leaves my lips and just dangles there defying the laws of physics – when the mass of the ball on the bottom must by now be too heavy to remain attached to the thin glistening thread that keeps it anchored to my mouth…..surely it must detach itself from me soon? To assist, I pinch at the source from my lips, between fore finger and thumb, but now I have one strand with large ball still descending dangling from my fingers and now an additional strand from my fingers to my mouth. It’s like that old handkerchief magic trick, where they just keep coming out of his mouth over and over again.
Only at the point where it defies Newtons Law of Gravity is when I get fed up with the whole thing and just wipe the thing away with a tissue.
I started off my blog by saying that there is very little dignity involved in the process. Due to the excess phlegm that is now being produced, it’s too hard to swallow it so it has to come out. I have now resulted to walking round with a self made spittoon (a empty water bottle that is taped up, so that you can not see it internal contents … nice eh?). On average I am having to use the bottle once every 5 minutes, more if I try to utter orally.
There are times where I do have to try and talk, in hospital for instance. I have now been caught out a few times where I have tried to talk a stranger, but did not realise the amount of phlegm in my mouth at the time and rather than sounds coming out, this huge dribble of phlegm comes out … very embarrassing. And it’s not nice for the person you are talking to, especially if it’s only a young girl at the pharmacy.
Hence why I am now pre-armed with my spittoon bottle. I apologise first to whoever I am about to talk to, before I spit into my bottle and whisper with what audible tones I have left … very Brundal Fly!!!
The phlegm however is getting worse and I am now using a nebuliser to try and break down the thick phlegm that is congealing at the back of my throat. If I don’t break this down it will all become a bit too congested down the back of my throat and coughing is too excruciating to contemplate at the moment….lets hope that this works … hope you like the picture
Appetite
I’m no longer hungry as I appear to have just gone off eating this week, which is most probable why my weight has dipped. But I have to keep my weight on over the next two weeks even if it is mainly via the PEG.
This week I had to get my PEG changed, supposedly for a more up market one, but I prefer the old one better. I was told it would not hurt as much as it did when it was put in and they were right. But it still bloody hurt when they took the old one out and said “ok new one going in, it wont hurt” oh yes it did. Both times when the old came out and the new went in my stomach went into a painful spasm. But in their defence it was not as painful as when it was first put it …nothing could ever be that painful.
After I had my new PEG fitted we went for a Coffee, or my wife did; I just sat and people watched. I found myself watching two people eat a home made sandwich they sneaked in at Costa Coffee. Although I did not like the look of the contents of their sandwich, in my head I replaced it with lettuce and mayo, over ham and gherkins, over Cheddar cheese and pickle, all on a medium soft white bun. So with the idea of my sandwich in their hands, I watched as they sneaked their sandwich out of their bag and began to take little bites so as not to be seen by the staff for fear of being thrown out … wow the best type of sandwich … a risky one.
I sat there for a full 5 minutes as they demolished the first slice of their (or was it my) sandwich. It was as close to food porn as I had got in the 6 weeks of my treatment. And I loved it.
But I have suddenly become thirsty, thirsty for a long cool drink. Nothing alcoholic, just refreshing. The only thing I can just about drink at the moment is warm hot chocolate and I end up leaving half in the mug.
I also bumped into Mr 3 rashers of bacon this week (re last week’s blog). My, what a change. The poor guy could hardly walk and was constantly being sick. This disease has a way of fooling you that its going to be ok… then WHAM BHAM … it massively bites you in the back side. This guy has still got 3.5 weeks of treatment left, my fingers are crossed for him as he still has a long way to go.
My Neck
If I said I had the worse case of sun burn, then in truth, that’s all it is,,,,sunburn. Ok it might more liken a radiation burn in some SyFy film, but it’s still sunburn.
There was huge concern at the start of the week that the skin might crack, get infected and be too painful to continue Radio Therapy, but I have now got to the end of the week and thankfully neither of the two scenarios have occurred … yet.
What has happened is that the top layer of skin has died, peeled of and left new red raw exposed skin below. This new skin has now dried, set and it feels like it’s set my neck in concrete as I can’t move it.
You can see how bad it got this week.
The are two problems with this though:
its not actually set in concrete just a thing layer of scabbed skin and if i move it slightly tears/breaks, causing me agony, therefore
I try to keep my neck still but it’s locked in an unnatural position, which means I walk round with my neck crooned all day. This in itself causes me massive neck and back problems and my wife has to try and massage a huge ball of fluid that has congregated at the top of my neck each day. That’s love for you.
If you can imagine Quasimodo with sunburn around his neck, then you will not be too far from where I am at …obviously I still have my looks though … no comments there please!
To help with my neck I have started up my own range of t-shirts. I can’t wear any shirts where the collar touches my sunburn, it just rubs against it and irritates it … So my new line is primarily aimed at rock singers with great muscle definition or as a great spin off, T-shirts for those with a sunburnt neck … have a look it might catch on
Hair loss
It’s still just round the back of my head, oh and I have now been told that it may not come back … so I do hope the mullet comes back into fashion soon as I think its the only cut I can have..it’s about time the mullet came back anyway, if not I may have to move to the home of the permanent mullet … yes Germany!!! Then i can really be called “Heir loss”.sorry bad joke
Chemo
I pleaded all my ailments this week and got a bed and if ever in the 6 weeks I needed one it was this Friday.
And it was a sad day today as I said goodbye to my off yellow surroundings and my Shirley Valentine wall. I know I have moaned about this department, but it’s nothing to do with the excellent care and brilliant staff they have here. So to cheer all the staff on and to show my appreciation I bought them a huge box of chocolates. They only go a short way to showing my appreciation, but I just wanted to let them know how brilliant they were.
Now Nick Knowles, do your flipping thing on this department!
Once again, whilst in Chemo and I am hydrated with all the saline, drugs and steroids and once I have had a sleep, I pep up a bit to watch my films.
This week I managed to watch Divergent….. it’s a bit in the hunger games theme, but the main hunky star is the guy who snorts crap (literally) in the first Inbetweeners film and whenever there is a facial shot of him, I just keep seeing him with that little bit under his nose.
If you have seen the film then you will know what I am talking about… if not stay blissfully ignorant of it, if you have not seen inbetweeners 1 by now it’s not something you will enjoy. I went to see Inbetweeners 2 last week and thought it was funnier than the first…. but thats just me …
In summary
Did I say “Bring it on week 6?” God I wish I had not. It was a lot harder than I had envisaged, but I am now there …. at the end of my 6 weeks of treatment.
And I will say I got off lightly.
But why do I think that?
Because I have seen what this treatment can do, how brutal it can be and how much this treatment demands of you, and it just takes, irrespective.
I did a lot of preparation coming into this and am of a positive mindset, but I would say that that only accounts for making things between 3-5% better. I would say a large proportion of this is how you have treated your body up to this stage and for me I have always played sport and ate healthily and I would say its this that that has been the major benefit as to where I am now in the process. However on the other side of that it’s not stopped me getting cancer and I don’t drink or smoke and there are a lot of overweight drinking smokers that will die of old age. so it’s a lottery
I will also add that having the PEG and adhering meticulously to the lotions and medicines, goes along way to easing the ride.
But I do keep telling people that I am the fittest illest person you know
Sorry, I also need to qualify my progress by including the support of friends and family, but most of all my wife. Statistically patients with a good support network around them do better.
All my healthcare professionals have told me I have done amazingly well to get this far in such good shape and that it’s very rare at the end of 6 weeks of treatment to be like this. I am no superhuman, just human, like the rest of you and I plan to stay that way for many years to come.
Patients who have already been through this treatment tell me that I am about to embark on the most difficult two weeks of my life, where parts of my body will be pushed to their very limits … something nice to look forward to after 6 weeks of being microwaved I suppose? So if you are an Apollo 13 fan … as I begin my sling-shot around the dark side of the Moon, communications may go quiet for a while, but they will return as we come back out of the shadow of the moon.
Gamma Ray Gary 