All a blur...

The title of this entry kind of describes the last few weeks. Since my last entry I've spent a week in hospital and since then have been let out with a strick regime of medication and I'm now feeding 100% through the feeding tube in my stomach.

Since that last post where the symptoms of the RT treatment had begun to kick in I had a meeting the oncologist and some of the other members of my care team at Trelisk and they insisted that I needed to come back in so that pain and food and fluids can be put under control.

I was placed back up on Wheal Coats ward, which is the ward I was very first admitted on the last November following my diagnosis. It really brought home to me how long it's been and how much had happened in that time. It was quite quite as the six bed room had patients ranging from gaul bladder removal to nerve damage from a nasty accident opening a can of tuna fish! and they al seemed quite happy to keep themselves to themselves. For once it was me with the anti social behaviour. I was being sick about every half hour, but not just any old sickness where you do it and its gone. This was the never ending dry wretching kind that seemed to produce an unsatisfing amount of bile with a very worrying ammount of blood. I mentioned the large ammount of blood to the doctors and they seemed to shrug it of apart of the symptoms of the treatment. Ok I'll go with that for now, I thought to myself.

The doctors requested that I be put on a syringe driver. This is a syringe full of a cocktail of pain and sickness relief that the driver will administer over a 12hr period. Great, I thought unil the cumbersome transparent box arrived that was to be connected to my stomach via a large flexible needle. The beauty of the driver is that it puts the drugs I need straight ino my blood stream, so here's mo way I can sick them back up, as I was doing before.

With the driver in place the differen was noticeable within a few hours. The urge to be sick had been cut right back and the pain in my throat, mouth, and jaw had become dulled.

Now to approach the fact that I was unable to eat through being sick so often, bu also the loss of movement in my jaw and the loss of my swallowing reflex ment eating had been reduced to small sips of water at best. They decided that a crsh diet using feeding tube had to be put ino place. This would mean a 1000ml bag of gloopy food replacement be given through my stomach tube over a period of 10 hrs. They recommend at this is done during he night, I tried this but it made me really sick. I've found it much easier on my stomach to feed during the day, but this involves these of a small pack pack that the food and pump fit inside. It all looks a bit kooky , but a least I can go and sit in the sun or watch the kids play in the garden instead of being locked down to a pump system set up in the back bedroom.

I thunk the biggest thought I've had on my mind of late is how close we are to the end of the treatment. I've got chemo on Monday which will take a week to get over and then I'm looking at only two more weeks of Rt and I'm done! I feeling pretty dragged down by the relentlessness of the travelling too and from hospital every day and the massive amount of drugs I'm on as well as the feeding through the stomach and the pretty hideous side effects from the RT itself. This aside it's been amazing to have some nice spring days this last week. It's like it's saying "not long now mate, soon be summer, soon be free"

Not so fast...

Just as we were all stood in the kitchen on Friday saying how well the RT was going and how well I was doing. I woke on Saturday morning with a very dry mouth and painful white sores lining the inside of my cheaks and throat. The side effects have arrived pretty much over night and as I write this on Monday morning I can say that they are getting rapidly worse. I now have to aim to eat food that will kind of dissolve in my mouth and needs little effort to chew and swallow. My jaw seems to have less and less movement to it as the days have progressed meaning that speech has become awkward and uncomfortable, looks like I'm going to sending a lot of texts from now on. Swallowing is very painful and the morning ritual of trying to take tablets has become a painful chore.

I get the feeling that with another 5 weeks of RT that this is a glimps of things to come. I'm dreading the final round of chemo in the 19th. The cell damage that the chemo does on top of this new round of side effects is going to make my mouth a very interesting place.

I'm back in today to begin week 3 of the RT treatment, so I think it's time to speak to someone about pain management as paracetamol aren't really cutting it anymore...

...and it looks like I need to put apple sauce and baby food are at the top of the next shopping list.

Week 2... Done!

So... That's week two of RT done, still no serious side effects aside from my spit turning into stringy slime and most foods have taken on a strange salty taste like they're infused with sea water... not nice.

I'm still being sick on a daily basis but I've been given some new meds that we hope will calm things down a bit. I think the sickness is less to do with the chemo drugs and more to do with the saliva changes effecting the way in which I'm digesting food or not as the case may be. I've tried really hard to eat as logically and a healthly as I can, but for the most part compact high energy food seem to be the most effective way of keeping calories on the inside. Ive also find drinking water really hard the taste is horrific, so I've been countering the strange taste by adding small amounts of fruit juice to hide the flavour, which seems to work okay.

The RT has gone well this week although I did have a bit of a scare when I found out that they were radiating the right side on my neck during one of the sessions. When I asked "why are you radiating the right side when the tumor is on the left?" the radiographer replied "maybe they haven't told you everything about your cancer". This had me pretty worried and left me thinking that perhaps things had developed or they had found something else and not told me. I finally got to speak to the specialist and he reassured me that in order to radiate the tumor site fully and avoid all the important stuff in my head it has to hit from many different angles, this means going in from the right and left sides.

I have no doubt that the nasty side effects are just around the corner, so I'm really trying to make the most of the time when I'm feeling okay. I've been trying to catch up with friends and spend heaps of time with the kids and get stuff done around the house... all of which leaves me feeling pretty whiped out most of the time.

The end of the treatment is in sight now and I'm just tring to get my head into the final round of chemo othe 19th of this month. I know this is going to be a real tough one, but I'm just trying to keep in mind that it's the final round and once I'm over that one that's it! I will still have another three weeks of RT and the aftermath that follows. Once I'm over that I'm hoping it will feel less a hard uphill slog and more the beginning of the decent down the other side of recovery mountain. We will see.

1 down... 6 to go.

So... that's the first week of Radiotherapy done. Its not been all that easy dealing with the effects of the chemo (daily sickness) and having to get into hospital every day for treatment. Despite this round of chemo being one instead of the usual three drugs, it's made no real difference to the impact it's had. Since Monday I've slept for 20 out of 24hrs and when I have been awake Im being sick,so it's been a challenge trying to keep food and fluids on board this week.

I've got no ill effects from the RT as yet other than a sore neck where the mask holds me in position for each treatment. I can tell though by the way the staff are talking that it's only a matter of time before the 'hard miles' begin.

Bethan has been running me in to the hospital each day which has meant a lot of juggling and re- organising to get this done. It's been very valuable to have B with me, not just for moral support but to help absorb the information that we are often bombarded with while visiting the clinic. I guess it's an effect of the chemo, but my brain just doesn't want to retain information at the moment,so it's very useful to have someone around who can.

I'm hoping that things will improve over the weekend other wise I'm certain that they will want me back in hospital if things don't change. Just got to hang in there, rest, drink and try and do all the right stuff.