Ice cream man...

I seem to remember this time being a complete mixed bag as far as wellness goes. One day I would be okay followed by three or four days of feeling terrible. I had lost a significant amount of weight since treatment began. I think I started at diagnosis at a burly 15st 7lb, I was now a sniff over 11st with the large part of this weight being lost over the last few months. I would get up in the morning and look down at my bony legs and the ribs sticking out of my back and wonder if this would ever return to normal again. I was still finding it very hard to eat and was relying of the fortified milkshake supplements to get by each day.

My swallowing reflex was barley there and with each gulp there felt to be an ever present feeling that I was going to take the fluid directly into my lungs. This gave the whole experience of taking food onboard a sense of uncomfortable fear which was very destructive as I found myself not wanting to eat at all. The monthly clinic visits I attend have a nutritionist as part of the team. I'm weighed at the beginning of each session to see how much weight I've lost over the month, or to see if things have stabilised. It was noted that I'd been steadily losing weight as the months were slipping by. The nutritionist took us to one side and suggested different ways to eat that would allow me to maintain my weight enough to be able to have my food tube removed. It was early days at this point, but it left me with a strong motivation to eat as much and often as I could in order to get the weight back on, or at least the same at each monthly weigh in.

Because I was limited by my mouth throat and the lack of ability to swallow I had very few food choices. Top of the list was ice cream, it was cooling and easy to swallow. The only issue was the taste, it was like eating cold salt! I would persevere though and proceeded to do a liter of Haggen Das (1100cal per tub!) every evening. I can image for some this sounds ideal, I can assure you its not. It was sickly underwhelming experience. One that has stopped me ever going near the stuff again, even now. On the flip side the weight started to creep back on. The next monthly weigh in I was a whole pound heavier! While the nutritionist was happy it struck me that eating like this is a bit of a daft way of going about things, after all I didn't want to well just so that I could develop another condition down the line. It was time to review the situation and find another way getting the weight on and getting the food tube out.

3 month scan...

It's three months after treatment ended. It's at this point the doctors feel that the damage and inflammation from the radiotherapy should be at the stage were a clear view of the current state of any residual tumor would be clear to see. A routine scan is performed to review the effectiveness of the treatment. Its at this point I find out whether or not I'm clear of the cancer or whether I need further treatment. The scan went ahead as normal and week long wait for the results began. At this point I was very nervous despite the fact that visual examinations of the back of my nose were "looking good". I think the fear of more treatment or the situation worsening with regards the spread of the cancer was an ever present thought.

The week passed quickly and on the Thursday I picked up my phone to see I had a missed call from a blocked number. I felt panic, why the call?, why not a letter?, why do they need to talk to me?, is it news thats too important for a letter?, the worry deepened. I called my oncologist and spoke to his secratery. It was his call, but he will be back in clinic for the next hour. I waited patiently for the hour to pass. Sure enough the blocked number call again. I picked up the phone and went through to the other room.

The doctor asked how I was doing, I said fine so as to move quickly towards the bigger question. "As far as the scan goes, its all looking fine"... I needed more, fine?, not excellent, not amazing just "fine". He went on to say that the area behind my nose was looking back to normal, but the lymph node in my neck had a couple of mystery cells that could be residual cancer cells, but were most likely scar tissue left over from the radiotherapy. He went on to tell me that the team feel that the best thing to do was to take a "wait and see" approach, wait a few months and re-scan, if there has been any change in shape or growth in that area the the lymph node will have to be removed. He wished me well and I put down the phone.

I was expecting to feel elated at the news, but it left me feeling slightly hollow and uncertain, but with a fait sense of relief. I went back to the lounge and told everyone the news. I remember it was a really nice sunny day. The kids were running in and out of the house oblivious to what was going on. I told Bethan and my mum and I think we all had a bit of a cry... in a good way.

The tooth fairy...

The next day I was sent off to be knocked out for the removal of my upper wisdom teeth. It was decided that due to the tiny distance that I could open my mouth I needed to have a breathing pipe inserted into my throat while I was still conscious Once they were happy that I was breathing okay, the full dose of anesthetic could be given and I'll be out like a light and wheeled off to theater.

It was made clear that this procedure is very uncomfortable, but not to worry as they were going to 'numb me up'. After being prepped with needles and lines I was given several cups of anesthetic jelly mouthwash to gargle. I was then give an intravenous shot of something that was described as "like a G&T" and they began.

I was asked to relax as they the three masked figures hovered above me. A metal pipe was put into my mouth and was gradually pushed towards the back of my throat. All of a sudden I couldn't breath and I started to gag. I felt my eyes widen as the sensation of choking and suffocation followed by panic started to over take me. I grabbed out in desperation with a hand landed firmly on the throat of the person on my right side. The last thing I heard was someone shouting "put him out, put him out!" and I slipped under feeling the return of my breath gently moving up and down the back of my throat. When I woke I felt double grumpy, apparently a common traight when it comes to anesthisia. If you go in bad you come out bad, and vice versa. I was wheeled of to the ward to recover.

Once at home I felt dramatically different. The pain in face had halved and I was back home to B and the kids, this was good.

Today...

Well, it's been just over four months since I've posted an entry on The Big Sea blog. I had to stop writing back in May as things really began to get bad.

I have also run into trouble trying to remember exactly what happened, it's as though large parts of what happened have been erased from my memory... perhaps some kind of coping mechanisim, I'm not too sure. I think I'd like to sumarise the highlights of what happened during those darker months just so that you the reader can get a sense of continuity, as well as allowing me a chance to piece things together. Reading the final posts it all sounds pretty rosy, but I guess I was in for a shock

As the radiotherapy finished I began suffering several different symptoms. My saliva turned into long thick, stringy ropes of goo that would ensnare food in my throat causing me to gag and choke. Sickness and nausia were never too far away. I  began to develop chronic pain in the side of my face that ran from my upper jaw into the side of my face, more about that later.

So began the sleeping (and these are the times that are difficult to recall). All I remember is having so little energy that I would often wake up to see Bethan holding a seringe, pumping a cocktail of medication or thick pink milkshake supplements into the food tube protruding from my torso. I would look at her and she would look at me just before I passed out again.


At this point I had zero energy and large white sores in the roof and back of my mouth. My tounge resembled a lump of cooked pork and my mouth and throat felt stripped out. My jaw had also become very stiff which was making me talk through my teeth. Despite the massive amount of pain medication I was taking the pain in the side of my head was incredible.

This went on for a long time with my condition getting worse and worse as I was less and less able to take on fluids and food with out them coming back up again. I was getting thinner and thinner and more and more dehydrated. I was being visited once a week by the community nurses. They would change dressings, check medication and generally see that I was doing okay. I could see with each visit there seemed to be a growing concern. It had to be taken into my next clinc meeting in a wheelchair as I was unable to walk. I saw a young doctor from the oncology team who pretty much straight away insisted that I was admitted and given hydration and a blood transfusion. I felt my heart sink at the prospect of having to stay in hospital again away from home and family.

I was admitted that evening and placed on hydration, which involved a couple of bags of saline and drip in the crook of my arm. I had been put of some heavier pain medication to help with the pain in the side of my face. I was struggling a bit with the side affects. I didn't feel myself at all and I was getting some very strange hallucinations that would usually center around spiders or other animals in my peripheral vision... not good. The troubling side effects peaked on the first night of my stay in hospital. It was about 3am and I needed to use the toilet. I woke up and looked around noticing that the drip had been moved to the other side of my bed. Usually the drip (on wheels) would come with me to the toilet, but this time there was a large table in the way blocking the drips exit. Looking back I'm not too sure what I had in mind other than I was going to use the toilet and thats that. I reached down and found the junction in the drip tube and pulled as hard as could. With a "pop" the drip tube snapped at the connector and I was free. I walked off down the corridor to use the bathroom with the drip tube hanging out of my arm. I stood there having a pee (with the door wide open). I heard a loud shriek and I turned to see the staff nurse wide eyed with her hand over mouth. "Goodness me Mr McQueen, what are you doing!?!" she said, "Having a pee" I replied looking down to see the trail of blood which lead down the corridor and was rapidly pooling at my feet... oops!

In the morning I woke up certain that it was all a very vivid dream. I looked down at my blood stained slippers beside the bed and realised it was no dream.

I was visited that morning by another doctor who was a mouth specialist. Having looked in my mouth and felt my jaw he promptly announced "Yes, we need to get those wisdom teeth out"... great!

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!