Thursday, 25 August 2016

Future plan? The first big meeting with Plymouth Brain People.

We set off early for the 10.30 appointment with Plymouth/ Deriford Hospital brain surgeons. Truro have stepped away from the deal saying that this is all beyond what they can can do, but are still sitting there in support. The hour long trip has us thinking "what next?", " what's possible", " what do they have up their sleeve?".
We get into the meeting room with a single surgeon. Relaxed young guy who introduces himself and we all sit down. Looking though the most recent scan he shows the location of the new tumour on the left side of my brain and the possibilities of surgical removal. Surgery is possible from what he can see, but he's quick to lay out the serious risks which include loss of speech snd control of the right side of the body. He runs a few basic physical tests on my sight, strength and co-ordination. All seem pretty good.
While he confirms that the "Primary" area where my Cancer started 5 years ago was is very clear and healthy looking the new finding suggest that the Cancer is now in my blood and moving around my body. This suggests that the Cancer may well be developing elsewhere (lungs, liver etc), so will have to be checked with a full body scan. Only when this is analysed can a serious decision be made on how this can be takled. There were was suggested use of chemo, Radio and surgery depending on what the information the scan gives.
So... until we have the new scan that it for now. It was good to meet this person, he was very confident and relaxed which made him easy to communicate with. We drove home just thinking quietly about what had just happened. Perhaps I expected too much in a full battle plan, but a least things are moving. Just looking forward to the kids getting back from their day trip so going to rest up till then and try to keep this out of my mind for a while.

Saturday, 20 August 2016

A life change and need to break this limbo...

Okay... I've not really bothered or needed to enter on her since getting back from London last Feb. It hasn't felt that important as the story has pretty much been the same throughout.
We returned to London in April to have a scan and result that would indicate the success of the Jan/Feb Radiotherapy treatment... it did. Professor Nutting was very happy following the visual test and said it was "looking good" and " we will see you in September for the next scan/check). So, off we went home, happy and looking forward to moving forward in coping with the expected symptoms that the RT treatment had left behind.
The last three or so months has been a struggle. Bouncing between trips to hospital and a huge list of issues we have always thought were to do with treatment. My daily life has always needed a lot of rest and has often been broken up three hour sleeps caused by the pain killer medication that has been in place to cope with the pain in the left side of my face/jaw. This alone has always caused a lot of frustration when all I've really wanted back is my family, friends and surfing. I've been collecting a quiver of new surfboards from my favourite board builders, new summer suits and gear in anticipation of getting back in the sea. I've managed a paddle with a friend on a flat day, but that has been it thanks to the introduction of strange dizzy spells caused by standing to quickly.
As the investigations into these issues has deepend it called for an MRI scan to try and find out what was the main cause of these problems. Last Friday we were visited by our local GP with the readily from the scan. The written report gave the result of scan exposing the possible re-growth of the old NCP tumour which suggests the RT from London has not worked, but also a spread into my brain into two places. This information is not 100% confirmed in its detail, but the presence of Cancer in my head again it certain. The difference of this announcement is that it is aconmpanied by the almost 100% certain fact that this is not a curable situation and when a patients cancer spreads to the brain there is nothing that can medically be done beyond pain control. The fear of Cancer has been around me since the first encounter in 2011. It lingers daily, but has always been faced with a strong sence of hope regarding escape from what we all know as a premature end to human life. Being told that the single direction available offers only a controlled end within 6-12 months has set a very unfamiliar scene.
The thing is we are all set to die, it's part of life... but to have respected medical people announce a rough idea when based on other peoples ends in a similar situation is surreal to say the least! Any of us could loose our lives today, tomorrow, this year... who knows??? Who wants to know???... no one! Simple as that. It's a good part of lift being blissfully unaware of how, when or anything to do with your departure from loved ones and this amazing place we live. Today thow, I have begun to live by the opposite... and it hurts more than anything I have ever experienced.
The biggest pain in this so far is the concern for kids... the unfairness of this is beyond brutal. Why should they loose their dad?... and the endless questioning along these lines this week has been fierce to say the least. Have I reached any point of conclusion or understanding?... no, nothing at all.
So... we are still in this place where the olan for the future is not set. This is because we haven't had all of the information and confirmation of what is doable and what is not. We spoke to London
and the Prof has said that he needs confirmation that there is nothing either surgical or in a different direction possible as he is reporting back with limited info. Once we  have  this big picture and we have met with the surgical team in Plymouth we will be called to make a decision and either try to move forward or it may just be that there is nothing to do, no treatments just a bit of control regarding pain and remaining lifestyle???? This has been the biggest and strangest part in this so far... "The Choice". One is it not fight, roll over, engage and share a short, but high quality peice of time before the end OR through treatment... battle, extend, push, suffer, try to extend the time. The problem is quality of life. I've been there before... it's awful. You are not you, you are a cancer victim inside and out. You become a person who is riding constant negative problems and both stories are predicted to end in the exact same way just a slightly further time away. This is the limbo we are in right now. Just hoping that some kind of clarity can be raised soon. C

Wednesday, 17 February 2016

Side burns, ice cream and tough answers.

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.

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'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.

Saturday, 16 January 2016

Vampie walruss and a throat full of razors...

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.

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.