We set off early for the 10.30 appointment with Plymouth/ Deriford Hospital brain surgeons. Truro have stepped away from the deal saying that this is all beyond what they can can do, but are still sitting there in support. The hour long trip has us thinking "what next?", " what's possible", " what do they have up their sleeve?".
We get into the meeting room with a single surgeon. Relaxed young guy who introduces himself and we all sit down. Looking though the most recent scan he shows the location of the new tumour on the left side of my brain and the possibilities of surgical removal. Surgery is possible from what he can see, but he's quick to lay out the serious risks which include loss of speech snd control of the right side of the body. He runs a few basic physical tests on my sight, strength and co-ordination. All seem pretty good.
While he confirms that the "Primary" area where my Cancer started 5 years ago was is very clear and healthy looking the new finding suggest that the Cancer is now in my blood and moving around my body. This suggests that the Cancer may well be developing elsewhere (lungs, liver etc), so will have to be checked with a full body scan. Only when this is analysed can a serious decision be made on how this can be takled. There were was suggested use of chemo, Radio and surgery depending on what the information the scan gives.
So... until we have the new scan that it for now. It was good to meet this person, he was very confident and relaxed which made him easy to communicate with. We drove home just thinking quietly about what had just happened. Perhaps I expected too much in a full battle plan, but a least things are moving. Just looking forward to the kids getting back from their day trip so going to rest up till then and try to keep this out of my mind for a while.
Thursday 25 August 2016
Saturday 20 August 2016
A life change and need to break this limbo...
Okay... I've not really bothered or needed to enter on her since getting back from London last Feb. It hasn't felt that important as the story has pretty much been the same throughout.
We returned to London in April to have a scan and result that would indicate the success of the Jan/Feb Radiotherapy treatment... it did. Professor Nutting was very happy following the visual test and said it was "looking good" and " we will see you in September for the next scan/check). So, off we went home, happy and looking forward to moving forward in coping with the expected symptoms that the RT treatment had left behind.
The last three or so months has been a struggle. Bouncing between trips to hospital and a huge list of issues we have always thought were to do with treatment. My daily life has always needed a lot of rest and has often been broken up three hour sleeps caused by the pain killer medication that has been in place to cope with the pain in the left side of my face/jaw. This alone has always caused a lot of frustration when all I've really wanted back is my family, friends and surfing. I've been collecting a quiver of new surfboards from my favourite board builders, new summer suits and gear in anticipation of getting back in the sea. I've managed a paddle with a friend on a flat day, but that has been it thanks to the introduction of strange dizzy spells caused by standing to quickly.
As the investigations into these issues has deepend it called for an MRI scan to try and find out what was the main cause of these problems. Last Friday we were visited by our local GP with the readily from the scan. The written report gave the result of scan exposing the possible re-growth of the old NCP tumour which suggests the RT from London has not worked, but also a spread into my brain into two places. This information is not 100% confirmed in its detail, but the presence of Cancer in my head again it certain. The difference of this announcement is that it is aconmpanied by the almost 100% certain fact that this is not a curable situation and when a patients cancer spreads to the brain there is nothing that can medically be done beyond pain control. The fear of Cancer has been around me since the first encounter in 2011. It lingers daily, but has always been faced with a strong sence of hope regarding escape from what we all know as a premature end to human life. Being told that the single direction available offers only a controlled end within 6-12 months has set a very unfamiliar scene.
The thing is we are all set to die, it's part of life... but to have respected medical people announce a rough idea when based on other peoples ends in a similar situation is surreal to say the least! Any of us could loose our lives today, tomorrow, this year... who knows??? Who wants to know???... no one! Simple as that. It's a good part of lift being blissfully unaware of how, when or anything to do with your departure from loved ones and this amazing place we live. Today thow, I have begun to live by the opposite... and it hurts more than anything I have ever experienced.
The biggest pain in this so far is the concern for kids... the unfairness of this is beyond brutal. Why should they loose their dad?... and the endless questioning along these lines this week has been fierce to say the least. Have I reached any point of conclusion or understanding?... no, nothing at all.
So... we are still in this place where the olan for the future is not set. This is because we haven't had all of the information and confirmation of what is doable and what is not. We spoke to London
and the Prof has said that he needs confirmation that there is nothing either surgical or in a different direction possible as he is reporting back with limited info. Once we have this big picture and we have met with the surgical team in Plymouth we will be called to make a decision and either try to move forward or it may just be that there is nothing to do, no treatments just a bit of control regarding pain and remaining lifestyle???? This has been the biggest and strangest part in this so far... "The Choice". One is it not fight, roll over, engage and share a short, but high quality peice of time before the end OR through treatment... battle, extend, push, suffer, try to extend the time. The problem is quality of life. I've been there before... it's awful. You are not you, you are a cancer victim inside and out. You become a person who is riding constant negative problems and both stories are predicted to end in the exact same way just a slightly further time away. This is the limbo we are in right now. Just hoping that some kind of clarity can be raised soon. C
We returned to London in April to have a scan and result that would indicate the success of the Jan/Feb Radiotherapy treatment... it did. Professor Nutting was very happy following the visual test and said it was "looking good" and " we will see you in September for the next scan/check). So, off we went home, happy and looking forward to moving forward in coping with the expected symptoms that the RT treatment had left behind.
The last three or so months has been a struggle. Bouncing between trips to hospital and a huge list of issues we have always thought were to do with treatment. My daily life has always needed a lot of rest and has often been broken up three hour sleeps caused by the pain killer medication that has been in place to cope with the pain in the left side of my face/jaw. This alone has always caused a lot of frustration when all I've really wanted back is my family, friends and surfing. I've been collecting a quiver of new surfboards from my favourite board builders, new summer suits and gear in anticipation of getting back in the sea. I've managed a paddle with a friend on a flat day, but that has been it thanks to the introduction of strange dizzy spells caused by standing to quickly.
As the investigations into these issues has deepend it called for an MRI scan to try and find out what was the main cause of these problems. Last Friday we were visited by our local GP with the readily from the scan. The written report gave the result of scan exposing the possible re-growth of the old NCP tumour which suggests the RT from London has not worked, but also a spread into my brain into two places. This information is not 100% confirmed in its detail, but the presence of Cancer in my head again it certain. The difference of this announcement is that it is aconmpanied by the almost 100% certain fact that this is not a curable situation and when a patients cancer spreads to the brain there is nothing that can medically be done beyond pain control. The fear of Cancer has been around me since the first encounter in 2011. It lingers daily, but has always been faced with a strong sence of hope regarding escape from what we all know as a premature end to human life. Being told that the single direction available offers only a controlled end within 6-12 months has set a very unfamiliar scene.
The thing is we are all set to die, it's part of life... but to have respected medical people announce a rough idea when based on other peoples ends in a similar situation is surreal to say the least! Any of us could loose our lives today, tomorrow, this year... who knows??? Who wants to know???... no one! Simple as that. It's a good part of lift being blissfully unaware of how, when or anything to do with your departure from loved ones and this amazing place we live. Today thow, I have begun to live by the opposite... and it hurts more than anything I have ever experienced.
The biggest pain in this so far is the concern for kids... the unfairness of this is beyond brutal. Why should they loose their dad?... and the endless questioning along these lines this week has been fierce to say the least. Have I reached any point of conclusion or understanding?... no, nothing at all.
So... we are still in this place where the olan for the future is not set. This is because we haven't had all of the information and confirmation of what is doable and what is not. We spoke to London
and the Prof has said that he needs confirmation that there is nothing either surgical or in a different direction possible as he is reporting back with limited info. Once we have this big picture and we have met with the surgical team in Plymouth we will be called to make a decision and either try to move forward or it may just be that there is nothing to do, no treatments just a bit of control regarding pain and remaining lifestyle???? This has been the biggest and strangest part in this so far... "The Choice". One is it not fight, roll over, engage and share a short, but high quality peice of time before the end OR through treatment... battle, extend, push, suffer, try to extend the time. The problem is quality of life. I've been there before... it's awful. You are not you, you are a cancer victim inside and out. You become a person who is riding constant negative problems and both stories are predicted to end in the exact same way just a slightly further time away. This is the limbo we are in right now. Just hoping that some kind of clarity can be raised soon. C
Subscribe to:
Posts (Atom)