It's been a really interesting two weeks. The daily radiotherapy has taken place as planned and so have the blood tests and meetings with the different members of the Marsden team. I have felt no ill effects and have enjoyed getting out and about, taking photos and seeing as much of London as I can, but as I sit here writing this I can confirm that during the last 48 hrs the side effects have deffinately rolled into town. It started a few days with a tightness in the left side of my jaw and a large white ulcer in the back of my throat. I had noticed that I was talking through my teeth a little more especially when I was tired. Thursday's RT was followed by a meeting with the Head and Neck specialist nurse, the dietitian and the speech therapist. A very eager and helpful bunch, but the meeting felt a lot like an interview in front of a panel. They were shooting questions at me left and right about my last experience with cancer treatment as well as this recent bout. They were certainly thorough. With my jaw tightening due to the effects of the radiation the speech therapist introduced me to a new method of stretching the tendons at the side of my face. "Have you used these before?" She said holding up what looked like a large wooden lolly stick. "Nope" I replied. Standing me I front of he mirror she passed me two small stacks of these wooded tounge depressors and had me place them in between my teeth at both sides of my mouth. I can only open my mouth about 15mm on a good day, so as she started to slide more of these sticks in one by one the pain increased very quickly. I suddenly find myself standing in front of the three doctors looking like a vampire walrus with these two stacks of wooden sticks slotted in each side of my mouth... in a lot of pain as it stretches the damaged muscle and sinew in the sides of my face. "Do this four times a day... okay?", "Yeeeshhh" I reply with a tear beginning to form in my left eye. I returned home laden with panflets and info guiding me through what they do and contact details should any major issues arise. I try And forget the rather strange meeting with the head and neck team and focus on the fact that I have just one more session early Friday morning and then Bethan and the kids get here for the weekend. Thursday evening offered a chance to esscape. I met with an old friend of mine who I used to skate with back in the early 90's. We met at Southbank skate park and after a quick coffee had a wander into town to look at a few other old skate spots and shops. We wondered about just chatting and catching up. It was nice to forget about the whole cancer treatment grind for a little while. We went for dinner and then went on to watch Henry Rollins perform at The Barbican Theather. It was a really good time and a welcome break.
Bethan called to say that they are only 10 mins away in the taxi on Friday afternoon. I go down the foyer of the apartment block to watch for them arriving. A black cab rolls into the forecourt and I see Cerys looking out in amazement at the huge buildings all around and Joel's crop of crazy blonde hair bouncing up and down in the back seat as he spots me in the revolving doors. I had been waiting what had felt like a very long time for this. Despite the last two weeks going quickly I have felt their absence during every moment of being here. I drop to my knees and catch them both in a joint hug trying to hold back the tears of relief. I feels so good that they are all here. We throw their cases in the apartment and head round the corner to this old pancake house that we had spied in the week. They serve huge old style pancakes with pretty much anything you can imagine on them. This was a big hit with the kids although they found out that they both hate Nuttella and once again London's amazing ability to empty my wallet was proven. It was worth it though just to see those smiles again.
I woke this morning with Joel staring into my eyes "Is it time to get up Daddy?". We have one day together before they head back on the Sunday. I had high hopes that this was going to be a special day that we could really pull out the stops, but as I lifted my head off the pillow I realised that things weren't right. Swallowing felt like the back of my throat was being slashed with razors and I felt exhausted. We had a late start but got into town for lunchtime and after visiting a couple of the hilariously posh sports car showrooms that are dotted about (at Joel's request) we headed to the kaos of Hamleys toy store and let the kids pick out something they liked. When we got back I felt terrible, not because I was tierd, but because I wasn't able to be there 100% for the kids. I wasn't feeling good at all, so went for a lie down. Bethan came through and assured me that the kids were completly happy and had come to see me and not London. It helped me re- frame the situation and ease the anger that I was feeling towards the situation. I think I had been feeling under pressure to make sure they had the best time possible.
So, Friday's RT session was number 10 of the 30 treatments. I just hope that things don't get too much worse with regards the side effects and I can get through the next four weeks without any serious issues.
Saturday 16 January 2016
Monday 4 January 2016
London Calling...
It's been a strange time since my last post. Getting better and better with the negative effects of the surgery fading away and even the mental side of things that I was struggling with so much have gotten a little easier. My energy levels have pretty much returned which has meant being able to get out and about and see friends and spend more time with family, taking Joel to see Star Wars being a major highlight! The weeks that have lead up to Christmas have been good, despite the lingering thoughts of what lies just after New Year with the move to London. I've had Radiotherapy on my head and neck before. The treatment I had was extensive and left me unable to eat and drink for over three months. I lost four stone and was ill to the point of needing regular blood transfusions. It was a dark time that to this day I still struggle to recall in much detail.
While attempting to brush the negatives to one side, the weeks and days have been steadily counting down until one day we suddenly find it almost time to go. The weight of what I was doing hit me hard. Not only was I leaving my family and friends behind for 6 weeks, but my home.
I love Newquay, I always have. I have never really liked leaving the place and always feel very happy when I return. I don't expect everyone to feel how I do about the place, but to me it's always had this magic about it and I've always been glad to call the place home. The train was leaving mid afternoon on the Sunday. We had decided it best that my mum come up with me to London and Bethan stay behind with the kids so that they can continue with school as normal and a least have one of us there with them. I sat with my mum and Bethan in the kitchen and and while we were talking travel plans through I could feel myself welling up. The thought of leaving the kids and my home was suddenly more overwhelming than ever before. Joel came through and jumped on my knee announcing that he didn't want me to go and broke down in tears. It was horrible, there was only a short time left before we set off to the station. I didn't know what to say other than the standard "I will see you soon, try not to be upset", but none of this did anything to console him. We left, the drive to station was in silence... there wasn't much to say. I was devastated. Me and my mum boarded the train at Bodmin and we were on our way. A few hours later we pulled into Tiverton and we looked at each other as the temperature dropped in the train and the engine switched off... we had broken down. After a brief wait we were put on a another packed train full of people traveling after Christmas. Mum and I were crammed into two tiny seats with our suitcases under our feet for the remaining 5hrs of the journey to London. When we finally got there it was late and we were tired. We found the apartment and got some supplies from the supermarket over the road that would see us through till morning. I spent an early night thinking about everything that has happened and what was about to happen over the next 6 weeks.
Radiotherapy is given in Fractions, this means it's a large dose of radiation broken down into smaller doses, usually given daily. This means I will need to attend daily appointments to receive my treatment. I had been issued an appointment sheet with all the dates and times of my 30 radiotherapy sessions. Each appointment should only take about 20 mins, they zap you and then let you go. I'm not having RT to the levels I had first time round, the dosage is less and the area it's applied to is smaller. With this in mind I hope that the side effects will be much less. The side effects of RT include, weekness/tiredness from changes in blood levels, internal sores, dryness as saliva glands are permanently damaged, headaches, sickness, general pain and burning to the skin where the beams of radiation enter. The issue with re-radiating a patient who has already received high doses of radiation are things like, hemorrhaging, osteonecrosis, plus many more really scary things that usually happen some time after treatment ends.
I show up at my appointment at The Marsden, instantly I'm scalded for not bringing my appointment card. After a short wait we are shown down the maze of corridors that end in the Radiotherapy department. Some of the Radiology team I have met before and are really cool people, super friendly and really put you at ease. I hop up on the table, lay back and the mask that was made last month is placed over my face and I'm bolted down. After some prodding and adjustments the staff leave the room and even though my eyes are closed I sense the machine quietly moving around me. There's no pain, not even the slightest sensation, just the occasional click or sound from the machine as a local radio station chatters away in the background. "That's it Mr Mcqueen, we will see you tomorrow" said one of the nurses, and that was that.
We walked through the now darkened streets back to the apartment with a keen eye on the crazy rush hour traffic now screaming through town like a river of lights, wheels and angry car horns. It leaves me feeling a bit like the country mouse blinded by the big city lights... but I'm sure that won't last too long.
While attempting to brush the negatives to one side, the weeks and days have been steadily counting down until one day we suddenly find it almost time to go. The weight of what I was doing hit me hard. Not only was I leaving my family and friends behind for 6 weeks, but my home.
I love Newquay, I always have. I have never really liked leaving the place and always feel very happy when I return. I don't expect everyone to feel how I do about the place, but to me it's always had this magic about it and I've always been glad to call the place home. The train was leaving mid afternoon on the Sunday. We had decided it best that my mum come up with me to London and Bethan stay behind with the kids so that they can continue with school as normal and a least have one of us there with them. I sat with my mum and Bethan in the kitchen and and while we were talking travel plans through I could feel myself welling up. The thought of leaving the kids and my home was suddenly more overwhelming than ever before. Joel came through and jumped on my knee announcing that he didn't want me to go and broke down in tears. It was horrible, there was only a short time left before we set off to the station. I didn't know what to say other than the standard "I will see you soon, try not to be upset", but none of this did anything to console him. We left, the drive to station was in silence... there wasn't much to say. I was devastated. Me and my mum boarded the train at Bodmin and we were on our way. A few hours later we pulled into Tiverton and we looked at each other as the temperature dropped in the train and the engine switched off... we had broken down. After a brief wait we were put on a another packed train full of people traveling after Christmas. Mum and I were crammed into two tiny seats with our suitcases under our feet for the remaining 5hrs of the journey to London. When we finally got there it was late and we were tired. We found the apartment and got some supplies from the supermarket over the road that would see us through till morning. I spent an early night thinking about everything that has happened and what was about to happen over the next 6 weeks.
Radiotherapy is given in Fractions, this means it's a large dose of radiation broken down into smaller doses, usually given daily. This means I will need to attend daily appointments to receive my treatment. I had been issued an appointment sheet with all the dates and times of my 30 radiotherapy sessions. Each appointment should only take about 20 mins, they zap you and then let you go. I'm not having RT to the levels I had first time round, the dosage is less and the area it's applied to is smaller. With this in mind I hope that the side effects will be much less. The side effects of RT include, weekness/tiredness from changes in blood levels, internal sores, dryness as saliva glands are permanently damaged, headaches, sickness, general pain and burning to the skin where the beams of radiation enter. The issue with re-radiating a patient who has already received high doses of radiation are things like, hemorrhaging, osteonecrosis, plus many more really scary things that usually happen some time after treatment ends.
I show up at my appointment at The Marsden, instantly I'm scalded for not bringing my appointment card. After a short wait we are shown down the maze of corridors that end in the Radiotherapy department. Some of the Radiology team I have met before and are really cool people, super friendly and really put you at ease. I hop up on the table, lay back and the mask that was made last month is placed over my face and I'm bolted down. After some prodding and adjustments the staff leave the room and even though my eyes are closed I sense the machine quietly moving around me. There's no pain, not even the slightest sensation, just the occasional click or sound from the machine as a local radio station chatters away in the background. "That's it Mr Mcqueen, we will see you tomorrow" said one of the nurses, and that was that.
We walked through the now darkened streets back to the apartment with a keen eye on the crazy rush hour traffic now screaming through town like a river of lights, wheels and angry car horns. It leaves me feeling a bit like the country mouse blinded by the big city lights... but I'm sure that won't last too long.
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