Improvements...

It's been four weeks since I completed treatment. It's been a funny rollercoaster of emotions. You would think that it would be feelings of relief and elation that would follow the completion of the five months of intensive chemo and Radiotherapy treatment, but it was strange. Perhaps it was because I had been told that the Radiotherapy treatment would keep 'cooking' me for a good couple of week after the treatment has ended and that thing were going to get worse before they can get better or just the nagging thought that the next step in e proseses is waiting for the scan that will indicate how sucsessful (or not) the treatment has been. As I have stated in previous posts the first coupe of weeks following the treatment were pretty hellish. I was relived to discharged from the hospice and have the pain driver removed, but the biggest plus came yesterday when I went into Trelisk hospital to have a meeting with the speech and language therapist and to have my Hickman line removed. I was pretty nervous about the line's removal. I had a conversation with a jr doctor a few weeks ago about the proseses involved in its removal. He described it as 'having it dug out of you chest, as there is a small peg thats held in place by tissue in you chest that will have grown around it while it's been fitted, this has to be cut free'. His graphic description did nothing for my confidence! The meeting with the speech therapist was very positive. She conducted a swallow test to see if I can swallow water and then food safely without ingesting any of it into my lungs. The test began with taking sips of water and works up through set yohgurt and then mashed banana. I managed all three with ease and she seemed really happy with how things were going. She told my that it's usually two months before people are able to eat the yoghurt, so on be on the banana after just one month was really good going. I asked what kind of foods I should be trying to eat, if at all. She said that a diet of sort food such as porridge, custard and over cooked pasta. This probably sound very unapealing to you, but after almost ten weeks without any solid food to me it sounded amazing. The procedure to remove the Hickman line wasn't as bad as I had imagined, in fast it was painless. The local anesthetic was so powerful I counldnt feel a thing. I came away with four stitches and a small dressing feeling amazing! I was another artifact of my illness gone, another step closer to normality... It felt very good indeed!

Catch up, it's been a while...

Okay, I've been meaning to write a catch up piece on here to let everyone what's going on for a couple of weeks. Here goes... A couple of days after I posted the last entry I was in the depths of dispare re my situation, my mouth was a mess, I was in a lot of pain and I'd been issued with a pain driver, this is a syringe held with in a locked plastic box that would administer pain medication over a 24 hr period via yet another line that went into my arm. Not only did this serve as yet another reminder of how I'll I am, but it also made it very difficult to perform basic tasks like showering or going to the toilet due the fact that it has to be carried with one hand at all times. It was also suggested that following on from my very last treatment that I spend a few days in a hospice in St Austell. I went along with this, but I quickly realised that for me it was a really counter productive situation. I was missing home and family far to much to sat in this little room string out of the window at a bird table. I asked to be released and my request was met. I was home after four days, feeling much happier and more ready to heal. A short time after I got back home the pain drive was removed and all of a sudden I began making huge improvements. My mouth began to heal and my saliva changed from he thick chewy green rope to a lighter foam that seemed to keep my whole mouth moist... I sundendly felt as though I'd turned a corner. I spent the following days up and about playing with the kids and enjoying visits from freinds, it was great. A few i as days later I seemed to crash and ended up back in bed just wiped out. I still felt things were improving with my mouth,sense of taste and smell, but I just couldn't get up out of bed. This went on for several days until the situation final started to get a little better, although im yet to return to feeling as good as I did over that short period. This is the main reason I've not been keeping up with the blog, I've just been spending days and days sleeping. During this time I have started to get very hungry. I've been eating a liquid diet throug my feeding tube that was a hit and miss affair at best. By that I mean whether or not I manage to keep the thousand calories a day in my body with out being sick. There just seems to be something about either the process or the feed itself that keeps making me sick. This has lead to me loosing a lot of weight very quickly. In fact just under three stone so far. The docs aren't too worried, but have said that if I loose anymore I will have to be admitted and given IV feed. As my sense of smell has started to come back being around food has been like torture. I sat with everyone while they ate Sunday lunch the other day, it was hard work. The pain in my throat has subsided enough to take small sips of water which has had me thinking that maybe I could get away with eating small amounts of soft food. I made the mistake of trying to eat some raspberry sorbet. While the cold of the sorbet was fine the citrus flavouring was like hot acid in my mouth! It really knocked any confidence I had in my ability to eat solid food and I slid back into the easier opion of feeding through my tube....so my days at the momment are consumed with a rotation of trying to consume four lots of feed and forr lots of medication through the feed tube in my stomach. It's a dismal affair, especially for Bethan who is having to put all this together every few hours!

Lateness...

Firstly, let me apologies for they lack of posts since 23rd of last month. Theres a lot to tell but I will do my best to condense it into one 'catch up' post.

As I am about to begin the final week of RT treatment I feel sort of okay. I still have severally physical reminders of why they call this the hardest part the treatment, but spirits are pretty good.

The last last chemo was tough, leaving me unable to eat, dehydrated and having to cope with a daily barrage of chemo related side effects ranging from extreme weakness in major muscles to jumping neves and pins and needles in my hands and feet. The jumping in my hands often so bad that using a phone or computer was very tricky. Tha main thing though has been the complete loss of saliva in my mouth. I had only ever experienced this temporarley in the past and knew that it was coming, but I didn't realise the impact it would have. Eating feels impossible
Right now... Which seems pretty weird. The existing saliva I have consists of a very thick, sticky green mucus that slowly builds up in my throat and inside my mouth in the form of hard plates similar on a tortoise shell on my tounge and the roof of my mouth. The remaining 'loose' material blocks my throat and needs to be cleared regularly. I have developed a routine of rinsing and mouth washing with different chemicals to help cut down the very worst of these symptoms.

I was going to publish this post yesterday, but didn't get to it. Just as well as I have just had an un planned meeting with Dr Colinson following my treatment today. He asked me how how it was all going, but I could tell by his responses that he had read upon my files and knew all there was to know. He ran through the states we must go through regarding scans and seeing the full results of the treatment once it's complete. I asked him "so, knowing what we know, how are thinks looking for me?" I know he can't answer this huge question with 100% certainty, but he looked me straight in the eye and said "this is highly, if not one of the most treatable forms of cancer In the head and neck reigion. I feel certain that things have gone very well at this stage."

I think I needed a bit of positivity from medical side of things as the last few weeks spent feeling really weak laying in bed with all the wires and tubes and stuff hanging out of me has had me feeling pretty low to be honest. We drove back home and all I counld think about was riding my bike, paddling a surfboard and piggybacking the kids in the garden... Its all so close now, I can barley stand it.

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.