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.
Tuesday, 24 November 2015
Saturday, 21 November 2015
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.
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.
Wednesday, 18 November 2015
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.
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.
Tuesday, 17 November 2015
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.
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.
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