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.

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.

The Next Phase

I was very wrong in thinking that I'd be "right as rain" in a couple of weeks following the operation. While not in any pain as such, there seems to be no escape from a tiredness that never seems to let up. It has stopped me in my tracks for weeks now, where the simplest things can take hours to achieve. I've only felt like this once before and that was when I was going through Chemotherapy. It's not just a bone-tired feeling in your body, but a fatigue that grips your mind, making thinking and memorising things scatty to say the least. It was getting so bad that I booked an appointment with the GP to talk about it as well as few post-op issues that had come about. I went along with my list of symptoms looking for answers. The numbness across my face, the weird "wet cardboard/burning rubber" smell coming from inside my sinuses and the strange piece of clear fishing line that seems to be holding the inside corner of my eye together which is now protruding internally from my left nostril, which when I gently pull the bit hanging out of my nose, it moves the corner of my eye!
I go through the list of issues with the doc and she is understandably reluctant to address any of the surgical stuff and asks that I see my surgical team about these things... fair enough. She went on to say the tiredness is a combination of the regular effects of having had major surgery and trauma of dealing with what's been happening over the last few months. I think she was right on point in saying that no "magic pills" are going to change the way you feel about what you are dealing with and suggested some kind of counselling. I had some counselling following treatment last time, it helped to be able to "spill ya guts' to a complete stranger and pass all that emotional baggage to someone qualified to deal with it and not just burden friends or family members with the constant "cancer, cancer, cancer" conversations. I can see how that would wear someone down, especially family members dealing with their own version of what's going on. The issue here is that they have admitted that there is a "gap in services" when it comes to dealing directly with the psychological issues brought about by cancer survivorship. Anyway more on this later...
We have a set of appointments to attend in the early part of the week, so we head up on the train to London with the kids on the Saturday and stay over a few extra nights with a view to making the most of some time as a family. I would have loved this to be the case, but I spent virtually the whole two days sleeping or struggling not to fall asleep in public. This often ended up with me having to go back to the hotel and crash out while B and kids went off and visited places and did fun stuff together. I found this really gutting I have to say... I tried my best to be part of it, but the weight of the fatigue just wouldn't let up.
It came time to get to these multiple appointments, first up was the speech therapist. She went though a few measurements of mouth opening and ability to eat and swallow so as to record changes that will occur through the Radiotherapy. We also got to speak about what the GP had said about the role of depression and anxiety in all this and she mentioned that The Marsden has its own systems in place to deal with the patients specific needs and that she would set up meeting for as soon as my treatment began after Christmas. This sounded more like it...! We then went on to see Prof Nutting. All the tests and biopsies were in and he confirmed that I have the exact same cancer as before and echoed how delighted he was that the results of the neck node were a false alarm and how this adds to the chances of getting the cancer gone. He checked out the area where the surgery had been done using a flexible endoscope and confirmed that it is 50% healed and looking good. He then went on to tell us that radiotherapy treatment will begin daily from January 4th for six weeks. There will not be Chemotherapy and he will only be using radiation on a very small/select area where the remaining cancer cells are laying in the lining of my upper throat behind my nose. He then drew a diagram showing how the beam of radiation will pass through both sides of my head just in front of each ear and meet in the center where the remaining tumor cells are located.
This means a few really good things regarding the impact of this treatment. I know first hand how brutal radiotherapy can be to the head and neck. The last time I had it my mouth, tongue and throat completely shut down and had to take liquid food, fluids and medication trough a tube in my stomach for well over three months. I lost about four stone in this time and for a time thought a might not make it... it was very rough indeed. Re-irradiating this area is not with out a whole new set of risks and issues, but fingers crossed this time should be know where near as severe.
Prof Nutting rounded off our meeting by saying how this is still a very complex issue, but he was very happy with how things are going. " We have done the kind of salvage procedure before with great success, touch wood this is the same..." and having dropped that little nugget of positivity we all shook hands and left for the next appointment feeling a little bit happier about things.
The next appointment was to have my mask made. This is a Kevlar mould that holds the patient's head still whilst having the Radiotherapy. It’s a pretty relaxing process, the composite sheet is heated using hot water and then placed over your face and shoulders as you lie on a metal bed. "They call this The Chelsea Facial" said the assistant..."Better than The Chelsea Smile!" I mumble through wet layers of plastic. It takes an few minuets to cure and I'm released back into the world...

I return the following day for a CT scan wearing the now fully hardened mask and that's that, no more hospital's till January all being well.
We get home late on Tuesday night, it’s been a loooong weekend peppered with good bits and very tired bits. The kids have loved spending time with family and seeing a little bit of London, but it's very nice to be home and looking forward to a few weeks of down time before Christmas and New Year.

Back in the game!

I'm sure if you've been following this blog you will have noticed a running theme of frustration, anxiety and fear... and with good reason. We have bounced from bad news to not so good news back to terrifying news. It's been a rollecoaster built mainly of low points. We were denied the all important info that we had travelled to London for last week leaving us all in complete limbo regarding the rest of the treatment and the suspicious node which was surgically removed from my neck. It was made clear that if this node was contained cancer cells it would sugest that the cancer was well on its way to developing elsewhere in my body and so limiting greatly any chance of cure.  We had been told that the call would come from London on either the Monday or the Wednesday of this week... well it came today instead while I was driving to Trelisk hospital to get my ear looked at. The phone rang, I pulled over. It was Professor Nutting "Hello, firstly great news on the neck node, it's come back clear from the lab"... I could have cried with relief, instead I almost punched a hole in the roof linning of the van with joy!!! He went on to say that he needed to see my in December at some point to discuss Radiotherapy, but that won't start until after Christmas. All I had in my head then was that I will be at home and well with B and the kids over Christmas.... Yes!
I realise that I'm not out of the woods yet by a long way, but this means I'm at least back in with a fighting chance, or to use Peter Clarke's words "back in that 20%". It has been the best day I've known in a very long time indeed. I still have cancer, but for the first time since this began it feels like the dice has finally rolled in my favour, and for that I am very thankful.

Dooche Bag...

It's been a tough week so far, hanging in limbo once again. My mum is staying with us at the moment which has been amazing. She is one of those people who just rolls her sleaves up and get the job done. Beyond that it's been a comfort to have someone close to talk to about all this. Don't get me wrong, friends and family have been overwhelmingly supportive, but there's certain things that only your mum understands. I've been really struggling to sleep this week. I'm finding that I'm waking up at exactly 2:15am every night and it takes until about 5.30am until I can get back to sleep. This is leaving me tired and grouchy through the day and it makes it much harder to keep a positive outlook about the situation. The kids have been struggling to. Joel has become very rude and aggressive towards everyone, much to our despair, as this is not the little boy we know. I'm still not feeling that well. I walked into town day before yesterday and met with friends. I have to say, it felt like running a marathon. I got home and slept all evening. This lack of energy plays a big role in Joel's attitude at the moment. It's clear to see he's angry because he doesn't have acsess to his dad in the way he needs. This only adds to the enormous guilt that I feel about putting my family through this. It also hightens my awareness that things are going to get much worse before they get better. It's easy to say "you shouldn't feel that way", but I do. I see and feel the daily impact this is all having on everyone and it saddens me. The hardest thing in all this is not the pain or the risk of the treatment, or not being able to do the things I love, it's this overwhelming fear of my family losing me. The thought of the pain that would cause in them is what keeps me awake at night. I know this is very upsetting, personal stuff, but I need to vent this as I'm so tired of dragging it around with me day and night. I know 'it ain't over till it's over' and I'm going at this full tilt with regards getting on with the treatment ,but there's no escaping the severity of what is going on here.
On a slightly lighter note. I forgot to mention in the last post about 'Nasal Dooching'... yeah, me either??? During the last meeting with Peter Clarke he mentioned that I should now be nasal dooching twice a day. This involves boiling up water and letting it cool to body temperature, adding a perscribed mixture of salt and bicarb soda to a special steril plastic bottle. Then, while inserting the nozzle of the bottle into one nostril, squirt the contents up there in one go allowing it to drain out of the other side. If you need to, YouTube it. Aparrently it's a bit of 'a thing'. Expecting this to be a complete nightmare, I set everything up and went for it. As odd as it sounds, it was actally quite pleasant! The stuff that came out was incredible, but my nasal space and sinuses were left feeling amazing! Anyway, apologies of this post is s bit of a bummer, we are expecting the call with the all important results either Monday or Wednesday... so until then.

There and back to see how far...

This was the big one, the meeting with Prof Nutting and Clarke that will finally give us plan to work to. We arrived in London around midday and met Bethan's family for lunch. My nose is still dripping with watery blood every so often, so it was a bit uncomfortable and embarrassing trying to eat a meal in public. Anyway, it was nice to see everyone and catch up on the weeks events. I feel like I'm healing from the surgery, but it's not been that straight forward. Everyday has been about wrestling with endless fatigue and despite the initial 'high' of getting through the procedure I was quickly brought back down to earth with a bump with in a couple of days of being back at home.
3pm quickly came around. The clinic is running late, which added another 40 minutes waiting time. It was unbearable sitting there in the waiting room imagining the different things we could be told in the next ten minutes and how that information will impact on our lives.
Finally, we were called through. Peter Clarke is sitting in the corner of his office, no Prof Nutting. After the usual greeting he is quick to tell us that the pathology report is not yet through. I felt mine and Bethan's hearts sink simultaneously. He proceeded to look me over and seemed pleased with the healing and that vocal and swallowing movement had been retained. Then this, "The thing we really need from the report is the information regarding the node that was removed from your neck. This will truly determine what we can offer you regarding further treatment".  Okay... but that node was checked last May and was "benign". "Yes, but if cancer cells are found to be with in it you will be looking at signifficantly less than a 20% chance of cure". In felt my jaw drop. "You must understand Mr McQueen, if cancer is found in this node it may well be that you will have to weigh up whether you feel the small possibility of effective treatment outweighs the poor quailty of life it has to offer" I have read about the 'quality vrs quantity" argument and people refusing treatment based on the option of having less time feeling normal rather than more time  under treatment crippled with sickness and always wondered what I would choose if faced with those options. This is all if's and but's based on getting this report, but once again the picture being painted is very bleak indeeed. "So, when will we know?" I said. He then went on to explain that Prof Nutting would call next week. I could feel the numb, hollow sensation of dissapiontment knowing that it would be yet another dark week of unbearable mental grind, trying to rationalise the situation and 'stay positive'... it's virtually impossible.
We flew home that evening crushed at the lack of real information. We put the kids to bed and sat up talking, but I think both of us had had enough of the day. So, what now? Once again we wait, we try and carry on as normal and either block out or accept that the news we recive next Wednesday via a phone call from Prof Nutting is going to be one of the most pivotal bits of information we likely to recieve in all of this. From there we will truly know the severity of what we are facing and the future impact it will have.

A busy two weeks...

Okay, I need to do a "catch up" post because tomorrow we fly to London again to get the results of last weeks operation and find out the rest of my treatment plan.
It's been an eventful few weeks, but here it is.

I had it in my mind that the week leading up to my operation in London to remove most of the tumor from behind my nose would be spent with family, resting, eating well and getting physically and mentally ready for this pretty hefty surgical procedure... not to be. On the Tuesday before I started getting severe pain inside my left ear. With in a few days and few more visits to the local GP I was on morphine and off to hospital with swelling in the side of my head that made my look like the guy off the Goonies... "Hey You Guys!". They kept me in for two nights on IV anti-biotics which seemed to do the trick, leveling out what was a pretty aggressive ear infection. The hospital were very good in that they kept regular communication with the doctors in London regrading my condition and took advice that would insure that the op would go ahead as planned on Monday. I was Lucky that we have a close friend who works as a nurse in hospital who was on hand with help and support (thanks Claire!)

On the Saturday I was released from Truro hospital and spent one night at home before it was time to jet over to London for Monday's operation. We met with family and spent the night in a really nice hotel just around the corner from The Marsden. I ordered a steak on room service, knowing the possible aftermath of the operation, and well as that from 7am I wouldn't be allowed to eat until after the operation. On the Monday we arrived at The Marsden surgical wing and booked in. There was a long wait as we were moved form waiting rooms, to cubicle, to ward with blood tests and forms filled in and extracted at every turn. The anaesthetist called by and asked a few questions and finished up by say that she was going to get me "so high, that I will feel like a one man party!".. okay, lets do this!

4.30pm came around and I was sitting in my room staring at the hospital gown folded on the bed when the surgeon and his registrar burst through the door and after a brief hello dropped two disclosure forms in front of me saying "have a read and sign please"... I didn't need or want to read them. Either they do the surgery and stand a chance of living or the don't and I die,... easy choice, I sign. "Your very late, get ready quickly" they barked before exiting the room. I stripped and climbed into the surgical gown... it was extra small! Okay, no problem there's a dressing gown thingy too... I put it on... it's extra extra small!!! I look very stupid. Not to worry though, I'm sure I'll be wheeled down a maze of discreet corridors and service lifts? No, I'm frog marched with my undersized surgical wear down the public lift through the busy reception of the hospital... not good. You could see it in peoples eyes... poor man.

There's no tranquil pre-op environment to chill while the anaesthetist applies her relaxing chemical assistance, no... we walk straight into theater. "Bet you've never seen a microscope that big before" chirps the anaesthetist pointing a large black machine in the corner. "We are going to be using that on you in a bit!"... I was finding it difficult to get excited.

It's been a long day so far and we have come a long way. I'm standing there in a mini dress wearing a child's dressing gown, in a freezing cold room full of super busy people in blue surgical scrubs and masks. Relaxing on the cold metal bed and feeling the sting of the cannular in the back of my hand was almost welcome... this was it, we're off. I felt a warm flush go through my brain and I was gone...

I woke 3 hours later with someone speaking to me on my deaf side, I had no clue what they were saying so answered with a default "I'm fine" to everything that sounded like a question. The surgeon strolled up "how did it go?" I asked... "very well" he replied and walked away. The next thing I remember is being back in my hospital room with a guy praying over me. It was confusing, I didn't feel like I had or was about to die... but there's this guy in red lumberjack shirt blasting prayer rock from an i-pad and chanting out some kind of prayer. Bare in mind, I'm fresh out of surgery, I'm guessing I've been back in the land of living for less than half an hour... reeling from the drugs they had applied to keep a 14st man stone out cold for three hours, things we're weird enough! I mentioned this to Bethan in the morning and she insisted that it was a morphine induced hallucination. I needed to find out. Relief came when I checked with a friend I had worked with who is part of a church based in Truro. The church leader works in London and felt it was necessary to pay me a visit. I'm not a particularly religious person, but under the circumstances I'm not going to turn away any form of positive energy... but the timing was a little strange!

I awoke the next day and assessed the damage. I did this by turning my camera phone on myself like a mirror. I was hooked up to a drain which ended with a clear pipe coming from my neck. There was a large 6" incision in my neck where they had removed the two lymph nodes. I had tape all over my face supporting a plaster cast that covered my nose and heavy wadding that was soaked out with blood from my nostrils. I could feel the stitched in my upper gum below my top lip, they felt like very fine barbed wire. Overall, I was in no pain at all. I looked down a saw an old friend... a morphine trigger. A small plastic switch with a green light on top. When the green light comes on you can self administer another small dose of morphine. Bethan arrived to find me happily clicking my way through the morning. Beyond the morphine though there was this state of euphoria and relief. I was glad that things had gone to plan and that a large amount of the cancer had been removed without any of the serious issues I had discussed with the surgeon. My vision was intact, my voice was working, and I didn't bleed to death... cool!

As the days went by the drain was removed and sections of dressing were taken down. I felt myself being freed of the medical umbilical of the hospital's care until finally on the Wednesday the doctor announced "I think you should be good to go home tomorrow"... Home? I'd blocked it out, but that hadn't stopped me missing the kids terribly. I was discharged and we flew home on the Friday. That feeling...you know that feeling when you get back off holiday and you drink tea from your own mug, you wash in your own shower, you sit on your own toilet... The sun was streaming across the river and through the back windows as we were greeted by my Mum. The kids weren't long home from school, so we sat and talked and just soaked it all up. So good to be back.