Out of the frying pan...

It's been a very uninterested weeks or so since my meeting with the speech therapist. Following the sucsess of that meeting I returned home all fired up and ready to begin eating agian. I began that tea time with some mashed potato... It was terrible! I set about trying to eat it with a tea spoon due to the fact that my mouth will only open so wide. As soon as the food entered my mouth it starrted to burn the roof of my mouth. Not because the food was hot, but due to the sensitivity of the the healing skin and lack of saliva. I moved on and trying a little rice pudding, it was a similar reaction so I left my eating project for that evening and thought I would begin again tommorow. I woke late the following morning after a very restless night. Bethan had taken the kids over to Truro so i had the place to myself. I was hungry and really wanted to eat. I was scouring through the cupboards trying to think of something that wouldnt set my mouth alight. A kids size box of Cherios with loads of milk was the answer. I sat in the living room and began slowly eating the whole bowl... Sucsess! I'd managed to find a type of food that I could eat with out being in total agony. This process of trial and error carried on for a few more days and was accompanied by me drinking my milkshakes rather than putting them through my stomach tube as a way of getting a stable daily calorie intake. I would mix the shake with ice and semi-skimmed milk to make it thinner and easier to drink. It worked, I could get them down despite taking a good half our to an hour to drink. A couple of days after beginning my food experiments I woke on the Monday morning and things had dramatically changed. My throat had swollen up and it had become almost impossible to swallow. I was in agony. We called out the local GP and he prescribed more pain medication and I made the decision to go back to tube feeding while things hopefully settled down.The week that followed was spent in bed feeling very low and weak. Most days were really bright and sunny, but I just felt as though bed was the best place for me. I was turning back into the 'chemo bear' just trying to sleep the illness off. It was a daily occurrence, but I couldn't help getting myself wound up about my situation. I was laying there torturing myself with all the possibilities that could arise if the Radiotherapy treatment hasn't worked. I haven't had any scans through out the treatment or since it has ended so there was no way of knowing. The question that was rattling around in my head was "after all the treatment do I still have cancer?", and no matter who I spoke to no one could give me that answer. I was finding this mindset impossible to get out of and it was causing me a lot of stress. My next clinc appointment was this coming Tuesday. This was a post treatment review that would ofer an overview of how everything has gone and how well the healing process was going. We arrived at the hospital and waited over an hour to be seen. When we finally got in the there we were greeted by all the heads of my department. After a brief run down of what medication I was on the specialist started applying a clear gel to small black device with a long thin rubber tube on it. I'd seen this before and knew it was going up my nose. She examined the air space behind my nose and looked right down the back of my throat and after examining my neck thourly for any further lumps of bumps with her hands she sat back down in her chair. I must have been sat there with a "well?" look on my face, I was hungry to know. She said that my neck still had some minor swelling, but was fine and the area behind my nose was looking "back to normal". I felt this huge weight lift off me as I was sat in the chair, I looked over at Bethan and I think we both did all we cold not to burst into tears. She went on to say that I have had an exceptionally good reaction to the treatment and that things were looking very positive. I realise that he scan could still show a deeper picture of the situation and there is still the possibility of it showing up further problems, but to me the news today couldnt be better. Its the next big positive foothold that we needed to help carry us through this. We retuned home and I think for the first time in a good while I could feel myself smiling. It finally feels as though we are the right side of the situation for once. Yes, the eating issue is a challenge , but it's something that is more under my control and I know will improve in time. So... four weeks until the scan which will hopefully confirm today's findings. We are both feeling really positive that we've got an important stage done.

Food?

Last few days have been a strange part of this journey. I left the hospital following our most recent meeting with the speech therapist with my heart set on eating! I got home and immediately got stuck in. Bethan made me a bowl of Ready Brek wit a dash of Golden Syrup in it just to boost the calories. It's was terrible. The taste wasnt bad, it was just the excruciating burning sensation in the back of my throat that seemed to overpower any pleasure I might have got from each tea spoon full. I abandoned the Ready Brek. It was getting late so I opted for an early night, it had been a long day. The folowing day I decided to to take a step back and see if I could manage one of the milkshakes that I'd been putting into my feed tube. These shakes are on perscrition and come in several different flavours, but most importantly they pack about 400 calories per milkshake. This means that if I can consume four a day I'm well on the wy the total calorie intake I should be getting. I half filled a glass with ice a poured out a shake topping it up with a little milk. It wasn't to bad. The ice cold strawberry flavour milk seemed to go down okay with very little pain, and the flavour wasn't too bad either. So... The new strategie is to try different solid foods each time I eat, if it dosn't out then back it up with a shake.besides losing a lot of weight through this process I have become very week and prone to passing out. I was layed on the sofa talking to a freind on the phone the other day when I needed to clean my throat. I excused myself and stood up to go the the downstairs bathroom. I made it to the hallway and all of sudden got crushing tunnle vision and my legs began to buckle beneath me like a new born foal. I woke up on the hallway floor with a very worried looking young Joel stood over me and the telephone in pieces next to me. It made me aware that I nee to take things very easy while I'm in his state. The next day I started out with a milkshakes which went down fine. Bethan and the kids went out to Truro leaving me to take it easy at home. I made myself a bowl of Cherios with lots of milk. I let the milk soak the cereal through until it was pretty soggy. It worked... I had myself another option. One of the downsides to taking food orally is that is seems to have changed the situation with my saliva output. It's as though all this swallowing is washing my saliva away leaving my mouth very dry and uncomfortable. I feels like a bit of a step backwards compared to how good things felt just a week ago. I had read this on other patients blogs and journals. There seemed to be a lot of people saying that the recovery from Radiotherapy is very unpredictable and is very often a case of two steps forward one step back! My next contact with the hospital is on the 15th May. I have an appointment it the clinic to see the specialists. I think they want to do a basic visual check over to see how things are going. This will involve a camera going up my nose see what's going on behing my nose. I still feel very nervous about all this. I think it's not having any re assurance that things are okay. It's been quite a long time since we've been told that things are all good, I just feel like I need that again and soon.

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!