So... finally home, finally able to see and spend much needed time with family. I can't really express what it's been like having to try and switch off all those thoughts and feelings about missing home and the kids and just trying to knuckle down into the last few rounds of Radiotherapy... but we did it, and to be honest, even though it was only last week it already feeling like a long time ago. As I think I've explained before it's not uncommon for radiotherapy to continue working for a fair few weeks after treatment has ended. This seems to be the case this week. My throat and mouth are feeling very sore and the back of my throat seems to have a whole new set of open sores that have appeared this week. This is making eating a painful and challenging ordeal, but I'm determined not to end up with a stomach feeding tube (PEG) like I had last time, so I'm sticking at it. I've only lost about 7kgs in the last four weeks, so I'm hoping I can keep it at that rate for the next month or so until things start to settle. I've pretty much lost my voice to. I think the strain of hacking up a good couple of pints (no exaggeration!) of rubbery green and yellow phlem during each night are playing a big part. I remember this phase well from last time and I'm just trying to hang on the knowledge that it's not for ever and will improve in time. The burns on my face are sore and itchy but settle quickly using an Aloe gel a couple of times a day.
No voice, facial burns, fatigue, and random painful spasms in the back of my neck have made it not just difficult to get out and about, but has made me pretty reluctant to accept visits or be around people at the moment. I really want to see people, but Im not sure I can actually offer that much in return... other than someone who will most likely whisper for a few mins and then pass out. I came to the conclusion the other day that I'm best off hanging on till things improve. It's still been really cool getting texts and messages via other means. At least I can respond without running myself into the ground.
I wish there were more to tell, but between lots of hugs with the kids, sleeping a lot and watching films there hasn't really been too much going on. Each day at the moment is a tricky obstacles course of trying to eat 1500 cal, getting medication done in the correct order at the right time and trying to stay positive in some way. All these things have required more effort than I remember this week. Despite being home and having everything I've missed for so long right in front of me its been very frustrating in many ways as Ive not been able to engage with it all in the way I want to. It still feel is like I'm sitting on the sidelines of daily life unable to fully participate.... but again, I know it's there, it's just a case of being patient and committing to the seemingly endless daily routine... Take the drugs... try to eat... get the rest... REPEAT!
Bethan and the kids have been great, really helpful and very understanding. I've had a few enquiring conversations with Joel that usually begin with questions like "So what if you still have Cancer and he doctor can't give you anymore treatment...?"... those ones are real tough to find an answer to in my own head right now, never mind providing a rational explanation to a 7 year old who needs you in his life. It's all very tough at the moment... and I keep having to say "things could always be worse" to myself, but It been s heavy week so far and I know it's far from done.
Wednesday 17 February 2016
Tuesday 9 February 2016
Final Countdown...
So this is it, the final week. As I sit here with only three radiotherapy sessions to go it's hard not to think about the the future. In the short term, getting home, seeing everyone, breathing in fresh sea air and being able to stand and stare into horizons that aren't obscured by concrete and towering buildings, sleeping in my own bed, you know... the stuff we all miss when you spend time away. I do think it's going to feel a little bit strange though. I almost feel a bit apprehensive about it all and I can't really give you an exact reason why. Maybe it's leaving the umbrella of care that the team at the hospital have provided, and the safety of knowing that if anything goes wrong it can be fixed almost immediately. Maybe it's leaving the treatment itself. Although there will be a period where the radiation keeps burning away.. a bit like when you take a ready meal out of the microwave! I will begin the next phase of healing and all the damage that's been caused will settling down. I think the core of this anxious feeling comes from the knowledge that in the not too distant future I will have to come back to London to be scanned and see if the treatment has worked, or not. The date for this was revealed to us yesterday as April 6th. We have been through these moments many times since this began in 2011 and I've expressed the turmoil that accompanies those events many times in this blog. At the moment it feels distant, and though it's still a concern it's being overridden by the positive things in the present. The fact that I'm not actually that ill is playing a big part in this. Don't get me wrong this last 6 weeks has been far from easy and this week has taken on a new dimension of difficulty especially where eating food is concerned. The contrast for me though is thinking back to this phase of the treatment last time in 2012. I was in hospital having intravenous hydration and regular blood transfusions and was pretty far from okay. This time, despite getting tired quickly I'm up and about, washed and dressed everyday, able to eat solid food (to some degree), drink liquids and take medication orally... it's all very different. The only external change is the two areas where the radiation enters my head. My skin on both sides of my face, just in front of my ears looks like its been to Barbados, where the rest of me has definitely been indoors in central London for the last 6 weeks! So, me, my mum and my brown cheeks will be heading back home to Newquay on Friday. My last treatment is on Friday morning and then we get straight of to catch the plane as soon as we are done.
Mum and I have done well over the last 6 weeks. I know (and Bethan will back me up here) I am not the best patient in the world. I'm moody (yes, more than usual!), irritable and can be snappy and rude even to those who are trying their best to help. I can only explain this behavior by saying that it's fear and anxiety built up around the many layers of this situation that make me respond this way, but I fully understand how me being angry at the situation can make those around me feel uncomfortable as though it's directed at them...it's not, and for that I can only say I'm truly sorry. We thought it best that Bethan stay with the kids at home in Newquay. It made sense to upset their routine as little as possible. So, my mum was assigned to come down with me to help out if needed. We only have what we went through last time as a guide and at this point I was too weak to even dress or feed myself, so we guessed some assistance would be needed. This has not been the case this time and these extreme circumstances have been avoided. Mum (like a rock) has still been there everyday helping with medication, food shopping and handling timings/ arranging appointments at the hospital. I'm guessing it's been quite a lonely exercise for her especially over the last few weeks where I have been unable to speak very clearly or for long periods of time and have been spending large chunks of the day sleeping. We may have had a few scuffles, but nothing we can't come back from. I think that's to be expected when you are living in each others pockets for 6 weeks. In all though I think we have managed well, been a good little team where more than often Ive been the weakest link.
It was my final meeting with Prof Nutting yesterday. I had wanted to ask him for some time if through all the tests and scans that he had done and all the information that had been gathered, was there any clue as to how my cancer may have come about? I put this question to him in the meeting and he was swift to respond. He said "Yes, he result from you biopsy shows evidence of Epstein Barr". Now, I've read around my cancer extensively and new right away what he was talking about. The Epstein Barr virus is caught by over 80% of people on the planet at some point in their lives. It's linked to Glandular Fever and in the majority of cases a functioning immune system will clear the virus naturally. If it is not cleared it can lead to changes in DNA that eventually develop into many different forms of illness including Cancer. This has been clinically proven to have links to Cervical Cancer in women as well as other forms of Head and Neck Cancer... Nasopharyngeal Cancer being one of the main ones. I asked if there were any treatments that can be given such as vaccines or immunotherapy available post treatment. He replied that there isn't at this point, but clinical trails are going ahead in the near future to explore possibilities in this area. I said right away that I would love to be involved if that was the case.
We left his office free for the rest of the day, but I couldn't help wondering about the whole Epstein Barr thing. We obsess these days about diet, stress, lifestyle and environment and to a point those concerns are worthy and very important, but it seems to me that sometimes you just have to realise that cancer can come about by straight up bad luck and things that are well beyond our control.
Mum and I have done well over the last 6 weeks. I know (and Bethan will back me up here) I am not the best patient in the world. I'm moody (yes, more than usual!), irritable and can be snappy and rude even to those who are trying their best to help. I can only explain this behavior by saying that it's fear and anxiety built up around the many layers of this situation that make me respond this way, but I fully understand how me being angry at the situation can make those around me feel uncomfortable as though it's directed at them...it's not, and for that I can only say I'm truly sorry. We thought it best that Bethan stay with the kids at home in Newquay. It made sense to upset their routine as little as possible. So, my mum was assigned to come down with me to help out if needed. We only have what we went through last time as a guide and at this point I was too weak to even dress or feed myself, so we guessed some assistance would be needed. This has not been the case this time and these extreme circumstances have been avoided. Mum (like a rock) has still been there everyday helping with medication, food shopping and handling timings/ arranging appointments at the hospital. I'm guessing it's been quite a lonely exercise for her especially over the last few weeks where I have been unable to speak very clearly or for long periods of time and have been spending large chunks of the day sleeping. We may have had a few scuffles, but nothing we can't come back from. I think that's to be expected when you are living in each others pockets for 6 weeks. In all though I think we have managed well, been a good little team where more than often Ive been the weakest link.
It was my final meeting with Prof Nutting yesterday. I had wanted to ask him for some time if through all the tests and scans that he had done and all the information that had been gathered, was there any clue as to how my cancer may have come about? I put this question to him in the meeting and he was swift to respond. He said "Yes, he result from you biopsy shows evidence of Epstein Barr". Now, I've read around my cancer extensively and new right away what he was talking about. The Epstein Barr virus is caught by over 80% of people on the planet at some point in their lives. It's linked to Glandular Fever and in the majority of cases a functioning immune system will clear the virus naturally. If it is not cleared it can lead to changes in DNA that eventually develop into many different forms of illness including Cancer. This has been clinically proven to have links to Cervical Cancer in women as well as other forms of Head and Neck Cancer... Nasopharyngeal Cancer being one of the main ones. I asked if there were any treatments that can be given such as vaccines or immunotherapy available post treatment. He replied that there isn't at this point, but clinical trails are going ahead in the near future to explore possibilities in this area. I said right away that I would love to be involved if that was the case.
We left his office free for the rest of the day, but I couldn't help wondering about the whole Epstein Barr thing. We obsess these days about diet, stress, lifestyle and environment and to a point those concerns are worthy and very important, but it seems to me that sometimes you just have to realise that cancer can come about by straight up bad luck and things that are well beyond our control.
Wednesday 3 February 2016
23 of 30...
Okay, it's been a week or two since I last wrote anything on here. Life in London has become a strict routine of daily medication and daily hospital appointments. The "pain team" have been very good at staying ahead of things with regards the management of pain caused by the radiotherapy side effects. I like the way that they have pre-empted everything, making sure that I had the pain relief options at hand should they be needed as the symptoms worsen. They started me on a Morphine patch about 10 days ago. This is a small clear patch that allows the drug to enter my system slowly by being absorbed through my skin on my upper left arm. This can be added to as required by more morphine in tablet form if needed. I was also give a few different options of mouth washes that providing you learn the correct order they can be really effective in allowing me to eat with out too much pain or discomfort. I have also been issued a nebuliser, this is a breathing mask that works alongside a pump to give a vapour of saline solution that helps get rid of the dryness that occurs through the silva glands being damaged or disabled through the treatment. I use this twice a day, but is very useful first thing in the morning.
Some days we can be in and out of the hospital in half an hour, but this is rare. More often than not we end up having extended appointments or being reffered to another specialist and a one hour day can easily turn into four! It's great that they are being so thourgh, but it's takes its toll on me. I find after a short time now my voice gets very weak, not good when you are having to answer so many questions. I often get back to the flat and pass out in my room. I did yesterday at 2pm and woke up this morning! I guess it's the cumulative effect of the treatment as well that's knocking me for six.
We had a bit of a scare last week, I started getting intense pain in the base of my skull. The kind of pain that stops everything and on a few occasions it dropped me to my knees. I had something similar following treatment first time around, but when I reported it to the hospital in Cornwall the said it was to be expected and there was nothing they could do. This was not the response here... they were deeply concerned! This freaked me out quite a bit and despite the doctors saying "we need to scan you to make sure everything is okay" and " don't worry too much it's unlikely that it's the cancer spreading"... I had heard those words before and they offer very little reassurance. So once again we enter into the process we know all to well. The CT scan was done on the Friday morning and I got a phone call from the head and neck nurse that afternoon to say that there was "no evidence of cancer in that area"... the relief was immense!
We had a meeting today with the Maxi-Facial surgical team. They want to do a graft that will seal the hole in my jaw that links my mouth with my sinus. This was originally cause be the removal of a wisdom tooth following my first treatment. The bone in my jaw has been unable to heal due radiotherapy damage. The infortunate side effect of this is when I drink, liquid makes its way from my mouth out of my left nostril at random. Not a major issue... just embarrassing. They want to resolve this, but won't be able to do anything until the radiotherapy treatment has ended and the damage has healed. He did mention that he was hearing from all the different departments that my treatment was looking really good and is very much on track for being successful. This was another great piece of news! While we know nothing is ever certain in this game it was still nice to leave clinging to the positivity of his closing statement.
It feels like we are one the home straight now with end most definitely in sight! I know Joel has been struggling this week and even though I speak to him daily it's always very upsetting for him to say goodbye. In all honesty I've just had to try and put it all out of my mind as much as possible. It's the only way I can cope. I only have to dwell for second on home and realise how much I want to get back there. The feeling is crushing and I try not to go there. It's been nice to see friends who have visited as well, but we made a desision that was encouraged by the doctors that the remaining time here in London is to be dealing with what is most important... and that's the treatment.
So... just 7 RT sessions to go. I spoke to Bethan's dad today and we arranged transport back home to Newquay on the 12th of Feb. I honestly can not wait to get home.
Some days we can be in and out of the hospital in half an hour, but this is rare. More often than not we end up having extended appointments or being reffered to another specialist and a one hour day can easily turn into four! It's great that they are being so thourgh, but it's takes its toll on me. I find after a short time now my voice gets very weak, not good when you are having to answer so many questions. I often get back to the flat and pass out in my room. I did yesterday at 2pm and woke up this morning! I guess it's the cumulative effect of the treatment as well that's knocking me for six.
We had a bit of a scare last week, I started getting intense pain in the base of my skull. The kind of pain that stops everything and on a few occasions it dropped me to my knees. I had something similar following treatment first time around, but when I reported it to the hospital in Cornwall the said it was to be expected and there was nothing they could do. This was not the response here... they were deeply concerned! This freaked me out quite a bit and despite the doctors saying "we need to scan you to make sure everything is okay" and " don't worry too much it's unlikely that it's the cancer spreading"... I had heard those words before and they offer very little reassurance. So once again we enter into the process we know all to well. The CT scan was done on the Friday morning and I got a phone call from the head and neck nurse that afternoon to say that there was "no evidence of cancer in that area"... the relief was immense!
We had a meeting today with the Maxi-Facial surgical team. They want to do a graft that will seal the hole in my jaw that links my mouth with my sinus. This was originally cause be the removal of a wisdom tooth following my first treatment. The bone in my jaw has been unable to heal due radiotherapy damage. The infortunate side effect of this is when I drink, liquid makes its way from my mouth out of my left nostril at random. Not a major issue... just embarrassing. They want to resolve this, but won't be able to do anything until the radiotherapy treatment has ended and the damage has healed. He did mention that he was hearing from all the different departments that my treatment was looking really good and is very much on track for being successful. This was another great piece of news! While we know nothing is ever certain in this game it was still nice to leave clinging to the positivity of his closing statement.
It feels like we are one the home straight now with end most definitely in sight! I know Joel has been struggling this week and even though I speak to him daily it's always very upsetting for him to say goodbye. In all honesty I've just had to try and put it all out of my mind as much as possible. It's the only way I can cope. I only have to dwell for second on home and realise how much I want to get back there. The feeling is crushing and I try not to go there. It's been nice to see friends who have visited as well, but we made a desision that was encouraged by the doctors that the remaining time here in London is to be dealing with what is most important... and that's the treatment.
So... just 7 RT sessions to go. I spoke to Bethan's dad today and we arranged transport back home to Newquay on the 12th of Feb. I honestly can not wait to get home.
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