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.
Wednesday, 28 October 2015
The weight of the wait...
It's been an awful week. The weight of not knowing bearing down every second of everyday. I would love to say that I've just been able to switch it all off, but I haven't. I would love to say that I'm strong, but I'm not, I'm just like anyone else in this situation.... afraid. I woke up this morning with my pillow covered in hair. I've never lost hair due to stress before, but it brought to light the impact of how we are living through this at the moment.
Today is the day we get the call and find out what is going on regarding treatment. I have sat all day and watched my phone like a cat would watch a goldfish. At 5.25pm the call came, it was Peter Clarke (surgeon) from The Marsden...
He began by saying that the tumor is not inoperable, but it can not be removed entirely using surgery alone. There are sections of the tumor that are to close to sensitive structures for surgical intervention alone to be successful. He suggested going in lightly, removing a small amount of the tumor and limiting damage as much as possible while identifying what is tumor and what is RT damage from previous treatment. This information will then be used to guide the back up plan that Prof Nutting would perform with radio therapy and Chemo. With this on the table I could now make my feeling towards this known. I requested that he is as aggressive as possible regardless of risk and permanent damage so long as he feels it will open up a better chance of cure. My feeling on this is that I have nothing much to loose at this point, and if it came to it and we run out of options I would hate to be on my death bed thinking "what if" or "I wish I had"... and if this does end up taking me out I will have done my very best in committing to the treatment. He explained that this more aggressive approach could potentially open up options once he is in there, if this is the way I want to go. I do... if this is a one time deal I want get the best chance at this. I think anyone would wouldn't they?
He went onto explain that he will need to work very closely next to the nerves that control eye movement and the dreaded Carotid Artery, in his words "I don't want you bleeding to death on my operating table.... I'll try not to.
In addition he mentioned that there is possible involvement with the lining of my brain, he is still uncertain and this can only be confirmed surgically. If this is the case it changes the game quite drastically making a cure virtually impossible... but this is yet to be seen and will be confirmed or dismissed after the surgery has taken place.
Once the result/mapping gained from the surgery the RT/Chemo approach can then be decided by Prof Nutting. The whole thing will be implemented over 6 weeks or less depending on what Prof Nutting decides once he has the information from the surgery.
He is still talking about a 20% chance of cure, which we are all holding on to desperately at this end. His closing words to the call were "let's try and get you inside that 20%".
It feels as though it's time now to let these guys take over, to stop trying to second guess everything and let them get on with what they do and hope it goes the right way.
The operation will take place on Monday 9th of November.
Today is the day we get the call and find out what is going on regarding treatment. I have sat all day and watched my phone like a cat would watch a goldfish. At 5.25pm the call came, it was Peter Clarke (surgeon) from The Marsden...
He began by saying that the tumor is not inoperable, but it can not be removed entirely using surgery alone. There are sections of the tumor that are to close to sensitive structures for surgical intervention alone to be successful. He suggested going in lightly, removing a small amount of the tumor and limiting damage as much as possible while identifying what is tumor and what is RT damage from previous treatment. This information will then be used to guide the back up plan that Prof Nutting would perform with radio therapy and Chemo. With this on the table I could now make my feeling towards this known. I requested that he is as aggressive as possible regardless of risk and permanent damage so long as he feels it will open up a better chance of cure. My feeling on this is that I have nothing much to loose at this point, and if it came to it and we run out of options I would hate to be on my death bed thinking "what if" or "I wish I had"... and if this does end up taking me out I will have done my very best in committing to the treatment. He explained that this more aggressive approach could potentially open up options once he is in there, if this is the way I want to go. I do... if this is a one time deal I want get the best chance at this. I think anyone would wouldn't they?
He went onto explain that he will need to work very closely next to the nerves that control eye movement and the dreaded Carotid Artery, in his words "I don't want you bleeding to death on my operating table.... I'll try not to.
In addition he mentioned that there is possible involvement with the lining of my brain, he is still uncertain and this can only be confirmed surgically. If this is the case it changes the game quite drastically making a cure virtually impossible... but this is yet to be seen and will be confirmed or dismissed after the surgery has taken place.
Once the result/mapping gained from the surgery the RT/Chemo approach can then be decided by Prof Nutting. The whole thing will be implemented over 6 weeks or less depending on what Prof Nutting decides once he has the information from the surgery.
He is still talking about a 20% chance of cure, which we are all holding on to desperately at this end. His closing words to the call were "let's try and get you inside that 20%".
It feels as though it's time now to let these guys take over, to stop trying to second guess everything and let them get on with what they do and hope it goes the right way.
The operation will take place on Monday 9th of November.
Wednesday, 21 October 2015
The other side of the coin...
Just returned home from London. Bethan and I flew out again from Newquay at 11am this morning to Gatwick and took the train up to London to meet Head and Neck specialist surgeon Peter Clarke at The Royal Marsden.
We had time to find some lunch and a sit down so we could get ourselves together before the 4.15pm appointment. We were still in a very comfortable place (mentally) following the meeting on Monday with Mr Nutting, so we were able to sit and enjoy spending time together without the doomy feeling that has been hanging over us both for the last three weeks. We had hit on some progress and to use his words we're "on the right side of a bad situation". Today is the day where we see how it's all going to unfold... or so we thought.
Anyway, we arrived at The Marsden a little early again but were called through quite quickly this time by Mr Clarke. We were sat down in his office and looked forward to another blast of optimism. Not to be... he went straight into explaining how they have to carefully consider the use of surgery in this instance. The tumor is very close to the Carotid Artery that supplies blood to the brain, it has also grown into the muscles in my jaw. This means that treatment of any kind is very risky indeed due to the risk of long-term damage and possibly death through the treatment alone.
He went on to explain the surgical process, (without getting too gory) involves an incision in the upper gum above my front teeth and the removal of a section of the soft pallet (roof of the mouth). This alone with the tumors removal will have a permanent impact on swallowing/eating and speech down the line. All this is doable and I'm happy to live with the consequences if it gets the job done, but that's the problem it won't...well not 100%. The complete removal of all of the tumor through this method of surgery alone is impossible. This means that everything hinges on the effectiveness of re-radiation as a follow-up to the surgery. Here's the scary part... he then went on to say that "Not only is there just a 20-30% chance of "cure" using this process. If the tumor does not respond to the Radiotherapy a second time... I will have only 6-12 months to live and that is with Chemo holding things back, far less than that with out the Chemotherapy"
We were utterly lost for words... we had only been in the room the day before yesterday bathing in rays of hope from Nutting, only now to be brought crashing back down to earth with this brutal new perspective... it was heart breaking. I felt myself trying to hold back the exact same sentences that I said when I was first diagnosed in 2011. "There has to be something more out there...there's more to this than just me you know, I've got two little kids, what are they going to do without their dad?"... but I said it all anyway, it dipped out of me like a leaky tap. He's heard it all I'm sure and sat back in his chair and said "There's no escaping the gravity of this, but what we do now is get our heads together and try and find the best option for treatment".
The meeting was quickly running out of steam, there was that sense that everything that could be said, had been said and things could easily start to just go around in circles. "We will discuss our plans and options for effective treatment and come back to you next Wednesday". Great.., another unbearable week of uncertainty.
So, there it is, in short... they're going to try some stuff, if it works, great! I survive with life changing issues resulting from the treatment. If it doesn't work... that's it.
I've read repeatedly about the various options out there, it seems crazy that the options in my case are so limited. These guys are the best though...so we don't have an alternative.
We returned home, I stared out of the window of the plane into the dark the whole way back... furious at the doctors that have treated me in the past for not seeing this sooner at a point where something more could be done, sad for Bethan sat holding in the tears in the isle next to me, distraught at the thought of my kids growing up without me... at the same time while this is all swimming around in my head I'm anchored to the thought that they are still using the word "cure" and that there is still a chance of getting out of this... we just have to hold on.
We had time to find some lunch and a sit down so we could get ourselves together before the 4.15pm appointment. We were still in a very comfortable place (mentally) following the meeting on Monday with Mr Nutting, so we were able to sit and enjoy spending time together without the doomy feeling that has been hanging over us both for the last three weeks. We had hit on some progress and to use his words we're "on the right side of a bad situation". Today is the day where we see how it's all going to unfold... or so we thought.
Anyway, we arrived at The Marsden a little early again but were called through quite quickly this time by Mr Clarke. We were sat down in his office and looked forward to another blast of optimism. Not to be... he went straight into explaining how they have to carefully consider the use of surgery in this instance. The tumor is very close to the Carotid Artery that supplies blood to the brain, it has also grown into the muscles in my jaw. This means that treatment of any kind is very risky indeed due to the risk of long-term damage and possibly death through the treatment alone.
He went on to explain the surgical process, (without getting too gory) involves an incision in the upper gum above my front teeth and the removal of a section of the soft pallet (roof of the mouth). This alone with the tumors removal will have a permanent impact on swallowing/eating and speech down the line. All this is doable and I'm happy to live with the consequences if it gets the job done, but that's the problem it won't...well not 100%. The complete removal of all of the tumor through this method of surgery alone is impossible. This means that everything hinges on the effectiveness of re-radiation as a follow-up to the surgery. Here's the scary part... he then went on to say that "Not only is there just a 20-30% chance of "cure" using this process. If the tumor does not respond to the Radiotherapy a second time... I will have only 6-12 months to live and that is with Chemo holding things back, far less than that with out the Chemotherapy"
We were utterly lost for words... we had only been in the room the day before yesterday bathing in rays of hope from Nutting, only now to be brought crashing back down to earth with this brutal new perspective... it was heart breaking. I felt myself trying to hold back the exact same sentences that I said when I was first diagnosed in 2011. "There has to be something more out there...there's more to this than just me you know, I've got two little kids, what are they going to do without their dad?"... but I said it all anyway, it dipped out of me like a leaky tap. He's heard it all I'm sure and sat back in his chair and said "There's no escaping the gravity of this, but what we do now is get our heads together and try and find the best option for treatment".
The meeting was quickly running out of steam, there was that sense that everything that could be said, had been said and things could easily start to just go around in circles. "We will discuss our plans and options for effective treatment and come back to you next Wednesday". Great.., another unbearable week of uncertainty.
So, there it is, in short... they're going to try some stuff, if it works, great! I survive with life changing issues resulting from the treatment. If it doesn't work... that's it.
I've read repeatedly about the various options out there, it seems crazy that the options in my case are so limited. These guys are the best though...so we don't have an alternative.
We returned home, I stared out of the window of the plane into the dark the whole way back... furious at the doctors that have treated me in the past for not seeing this sooner at a point where something more could be done, sad for Bethan sat holding in the tears in the isle next to me, distraught at the thought of my kids growing up without me... at the same time while this is all swimming around in my head I'm anchored to the thought that they are still using the word "cure" and that there is still a chance of getting out of this... we just have to hold on.
Monday, 19 October 2015
Day trippin'...
Early start and we're flying off across mashed potato skys to London to meet Professor Nutting at The Royal Marsden Hospital. We arrive two hours early, but let them know we are here just in case there was a chance of being seen early. As I'm sat filling in forms I get a "No ID Caller" come through on my phone... it's Prof Nutting's secretary wanting to know where my most recent scan is, as it hasn't arrived at her office. I panic! I was told by the secretary at Trelisk that all info was forwarded last Friday. I'd spent four hours last Friday making sure that all the information needed had been passed on. If this scan isn't here in London it makes the whole trip pretty much invalid.
After a few minutes of calls to and from Trelisk Hospital the CT scans are found and sent over to The Marsden... and we both breathe a sigh of relief.
A glance around the waiting area, it's full of people from all over the place, different ages, colours, religions... whatever, pretty much all with cancer. It just hit home once again how indiscriminate it is. 2.30pm comes around and we are called in. Nutting introduces himself with a strong handshake and we get down to business. I didn't really expect much in the way of answers today as I knew that this would be more of an introduction as a "new patient", but he was quick to tell us the score. "You have to understand this is a very serious situation we are dealing with here". "When a tumor returns like this having been treated with Radio and Chemotherapy it becomes highly resistant to treatment".... I felt my throat tighten. "We are looking at surgery as the only possible method of cure in this instance".... okay, he said the magic word "cure"!
I had read pretty extensively about breakthrough treatment using endoscopic and robotic surgery techniques. A lot of them pioneered by a man called Peter Clarke who is based at TRM. It turns out Mr Clarke is the man I am being referred on to.
The first time I went through treatment I wasn't ever shown any of my scans or the images of my tumor... to be honest, I hadn't really wanted to see. Today was different... there it all was on the screen in glorious 3D, the inside of my head with the primary tumor illuminated with radioactive dye in the back of my nasal space about the size of a twenty pence piece just below my sinus cavity and brain. Nutting explained that we are "on the right side of a bad situation" due to the fact that the tumor is yet to move to bone or vital organs, is not yet in my brain and hasn't invaded my sinuses. He was quick to say that if that were the case we would then be looking at Chemotherapy only as a way of trying to control the tumor and extend life for as long a possible rather than getting rid of it for good...
I'm back there on Wednesday to meet Peter Clarke to discuss how it is all going to move forward with the operation and there was also a mention of the possible use of Cyberknife as a follow up treatment. This is an accurate single dose radiation treatment that will be used to unsure that nothing has been missed.
We shook hands and said goodbye.
We walked out of the waiting area and into the hallway. I was a bit numb to it all, it felt like I'd just had a 500 gigabytes of information downloaded into my head and there was an immediate need to process it before normal function could resume, I think Bethan felt the same... we needed a brew!
On the drive back to the airport I called my Mum and told her the news as I knew she would be sat in the front room of our house on her seventh cup of tea worried to death. The flight home was pretty sedate, though not physically tired, I think we both needed to give our brains a rest. It had been a day full of stress, worry, relief and excitement all rolled into one.
We arrived at home and I needed fresh air... I walked alone along the beach just as the light was dying off trying to process the day when I realised, I won't be doing Chemo! I will be able surf once I've got over the op. There's a really good chance that life won't be completely shut down for an entire year like that first time around. Things are still pretty scary, and I'm sitting here with cancer in the middle of my head, but it feels like things are looking up.
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