Back in project management mode, Wilson helped me with a chart to track what's been going on.
I realised I haven't seen any of my oncology team face to face since the end of April - and they would not recognise me. I've had a series of partial seizures every week since the new chemo started, no amount of steroids have relieved my dysphasia or lack of motor skills. (I've blogged enough about steroid wars, but that is what they were supposed to relieve, so I've been popping them in enormous amounts and paid the price).
Thanks to a French doctor and my own MRI scans, it turns out, not only has my brain swelled, but the cystic lesion returned. We might have killed off a bit of the tuna, but that creates a bit of swelling too, which creates pressure.
Long story short:
I'm back in the John Radcliffe Hospital, to be operated on Monday to drain the cyst and insert a reservoir so we can do it again if necessary.
(always knew I had redundant liquid in there somewhere)
That should relieve the pressure that is stopping me from speaking and able to use my hand properly.
Then, I'm onto the plan to get off the steroids, work out what's going on with the tuna, restart the chemo and get on with stuff.
More soon!
Sunday, 10 July 2011
Sunday, 26 June 2011
An Extraordinary Gift - and another view from elsewhere....
In our recent wedding speeches, both Wilson and I paid tribute to our friends and families - old and new, professional, and surrogate. I gave special mention to a group of women I have been lucky enough to call my friends for at least 25 years, and since January, these women have really shown what they are made of. One of them is Elaine.
Amongst being a mother of two who runs her own Nanny business (http://www.hattiesnannies.co.uk/), and who gives piano lessons, Elaine is herself a classically trained pianist. She came to see me in April, and gave me the most extraordinary gift. I share it with you with her permission - because she is part of my journey.
And because while I am struggling through the hefty chemo, the generosity of all our families and friends are a reminder that you never know what you might need when that surprise comes around the corner. (warning: you might blub)
It is the only thing, that we really own.
Time, it means everything
Find your own eternity and capture the moment
Look at the world around you
Reach for the rainbow
Jump over the waves
Feel the world around you
Her journey is one of highs and lows
But always with champagne and laughter
Wherever, wherever she goes
Reach for the rainbow
Jump over the waves
Feel the world around you
Look at the stars
Gaze at the moon
We cherish our Tarnished Angel
The memories that we treasure, the moments we’ve had
The friendships that have strengthened over time
Amongst being a mother of two who runs her own Nanny business (http://www.hattiesnannies.co.uk/), and who gives piano lessons, Elaine is herself a classically trained pianist. She came to see me in April, and gave me the most extraordinary gift. I share it with you with her permission - because she is part of my journey.
And because while I am struggling through the hefty chemo, the generosity of all our families and friends are a reminder that you never know what you might need when that surprise comes around the corner. (warning: you might blub)
A few words by way of introduction to a song
So, you called in January to deliver a life changing moment which will remain with me for forever: not least because in recollection of how the message was delivered. Only you could utter devastating words with such eloquence and style and which reflect your inner sparkle.As your friend, I feel privileged to know you, and would like you to accept a special gift from me, in part as your wedding present. As words have become your gift, music is mine, and so my gift to you is through musical composition.
This musical journey of mine began late January as soon as the receiver hit the floor. The notes just flowed and flowed to my fingertips in some kind way of magical way – as if Darcey had waved a magic wand and sprinkled fairy dust over the keyboard. The melody was born in a flash, followed in time by the chorus and the dramatic coda. The lyrics were inspired of course by many of the words in your newly discovered blog, and the frantic exchange of emails between the gang girls, which added another dimension. And so the song “Tarnished Angel” was born.
By way of creating the finished article which was singing in my mind, I enlisted the professional help of two very dear friends Claire and Richard; the former whose depth and strength of singing tone was a must, and the latter who is simply gifted in many musical ways.
So, this is my gift to you, thanking you for your precious friendship. I hope that it captures the moment of time you first wrote about, for you, our Tarnished Angel.
Composed with love.
ElaineTarnished Angel
Time is a most precious thingIt is the only thing, that we really own.
Time, it means everything
Find your own eternity and capture the moment
Look at the sunshine
Hear the rainLook at the world around you
Reach for the rainbow
Jump over the waves
Feel the world around you
She, she’s just an ordinary girl
With an extraordinary tale to tell youHer journey is one of highs and lows
But always with champagne and laughter
Wherever, wherever she goes
Reach for the rainbow
Jump over the waves
Feel the world around you
Look at the stars
Gaze at the moon
We cherish our Tarnished Angel
Remember the journey of life we have made
The times we have all spent togetherThe memories that we treasure, the moments we’ve had
The friendships that have strengthened over time
For she is our perfect tarnished angel
She’s just no ordinary girlAh for she is our perfect tarnished angel
She’s just no ordinary girlFor she is our perfect angel
Our tarnished angelA View from Elsewhere....
After one of my last little rants, I received the most extraordinary email from my cousin. As she pointed out, I have previously admitted that I don't "do" family. Like everyone, we all have our moments when we think we're different and I may well suffer from that a lot. But Vicky decided to tell me my own story from her point of view. And that's when you realise that floating through life in your own world is not actually what goes on....you create an impact on the people around you, even if you don't realise it.
To start with I want to say I have no doubt you will have much, much longer than the time scale you’ve been given and I’m sure you’ll forgive me my faith in God on this particular subject because I’ve had every Christian I’m close to and some I’m not that I’m praying for you.
When we were children our families holidayed together, we shared the same Grandparents on both sides. I had a crush Sarah’s little brother and when we visited, Sarah would curl my hair - Alan remained unimpressed when I delighted in showing him – and so Sarah let me help her make cheesecake and cushions instead!
When I was about 11/12 my cousin was making her first tentative steps on the rungs of her career moved to London to with our grandparents. I spent weekends there, I thoroughly enjoyed her doing my hair, and I had a fascination with the funky shampoos I wasn’t allowed to use. I vowed to own several Bourjois eye shadows and blushers after seeing them in her room and the nail varnish pen, why did that never catch on?
This was life before the meningitis and I loved it and looked up to my beautiful fashionable cousin who always seemed to have time for me. I remember being grief stricken when I found out how ill she was. The story circulated around the family that she’d been at a work do, she started being sick in the night, my Nan found her slumped in the toilet and put her back to bed assuming she was hung over, at this point she could still walk. The doctor was called, he diagnosed a sickness bug. The second time my Nan found her in the toilet she was unconscious, the doctor came again and said “don’t wait for an ambulance get her straight to a hospital”. By this point Sarah was covered in purple blotches and completely unconscious.
My grandparents would probably have managed to get her in the car but why struggle when my Dad was there - he was staying there at the time. He carried her to the car and held her all the way to the hospital. The diagnosis was meningococcal septicaemia, the worst type. I knew the symptoms long before the NHS campaign appeared in the media, anyone who’d been in close contact with Sarah had to have strong antibiotics at the time. This was the point in my life when I lost my cousin Sarah, she was my friend and I looked up to her but she had to concentrate on rebuilding her life and she didn’t return to live at Nan and Granddads.
Then Sarah, having learned to walk again, gained both your driving licence and motorcycle license, you decided to get on with life. Your love life and career got a bit complicated (to me anyway), but I was well on my own way to a love life by then. You almost chose the marriage path, but the career won out, and you moved to Chelsea to concentrate on your job.
Recent years are a bit clearer; our Granddad died, and by this point I was just becoming single after a casual romance and I think you were too. A year later I met Jonathan and got engaged and I chose you to be my bridesmaid.
You moved on to another senior job - I’d always pictured myself as a business woman so I watched and vicariously lived it through you. You put yourself through Management School and graduated with a Masters.
Then I heard about your tumour, I should have called but email, facebook and text are definitely easier when you suffer badly from foot in mouth syndrome, but I’m not immune even using the written word as you’ve already discovered.
Anyway the point to this email is to make it absolutely clear that you are not normal, you’ve excelled in the a world not renowned for its acceptance of women, you’ve tackled meningitis at a time in your life when you should be flaunting your looks and youth not rebuilding your life with a body that differs to the one you were born with. You’ve married and divorced with grace, you’ve had depression and beaten it. You’ve bought your dream home, continued with the career you love. You’re furiously loyal to the people you’ve chosen to keep close to you and none of it is in any way “normal”.
Extraordinary is a better word for your adventures so far and Extraordinary will be the best word for your future life too.
Vicky has given me carte blanche with her story, and I'd like to share some it with you:
Honey, you keep using the word “normal” in reference to yourself in your blogs, as merely a spectator in your life. I can very definitely say that the life you have led has not in any way been normal, and it seems to get more and more extraordinary as the years pass. Everyone has a different definition of normal and whether you want them or not I’m going to give you my observations of your life thus far!
To start with I want to say I have no doubt you will have much, much longer than the time scale you’ve been given and I’m sure you’ll forgive me my faith in God on this particular subject because I’ve had every Christian I’m close to and some I’m not that I’m praying for you.
When we were children our families holidayed together, we shared the same Grandparents on both sides. I had a crush Sarah’s little brother and when we visited, Sarah would curl my hair - Alan remained unimpressed when I delighted in showing him – and so Sarah let me help her make cheesecake and cushions instead!
When I was about 11/12 my cousin was making her first tentative steps on the rungs of her career moved to London to with our grandparents. I spent weekends there, I thoroughly enjoyed her doing my hair, and I had a fascination with the funky shampoos I wasn’t allowed to use. I vowed to own several Bourjois eye shadows and blushers after seeing them in her room and the nail varnish pen, why did that never catch on?
This was life before the meningitis and I loved it and looked up to my beautiful fashionable cousin who always seemed to have time for me. I remember being grief stricken when I found out how ill she was. The story circulated around the family that she’d been at a work do, she started being sick in the night, my Nan found her slumped in the toilet and put her back to bed assuming she was hung over, at this point she could still walk. The doctor was called, he diagnosed a sickness bug. The second time my Nan found her in the toilet she was unconscious, the doctor came again and said “don’t wait for an ambulance get her straight to a hospital”. By this point Sarah was covered in purple blotches and completely unconscious.
My grandparents would probably have managed to get her in the car but why struggle when my Dad was there - he was staying there at the time. He carried her to the car and held her all the way to the hospital. The diagnosis was meningococcal septicaemia, the worst type. I knew the symptoms long before the NHS campaign appeared in the media, anyone who’d been in close contact with Sarah had to have strong antibiotics at the time. This was the point in my life when I lost my cousin Sarah, she was my friend and I looked up to her but she had to concentrate on rebuilding her life and she didn’t return to live at Nan and Granddads.
Then Sarah, having learned to walk again, gained both your driving licence and motorcycle license, you decided to get on with life. Your love life and career got a bit complicated (to me anyway), but I was well on my own way to a love life by then. You almost chose the marriage path, but the career won out, and you moved to Chelsea to concentrate on your job.
Recent years are a bit clearer; our Granddad died, and by this point I was just becoming single after a casual romance and I think you were too. A year later I met Jonathan and got engaged and I chose you to be my bridesmaid.
You moved on to another senior job - I’d always pictured myself as a business woman so I watched and vicariously lived it through you. You put yourself through Management School and graduated with a Masters.
Then I heard about your tumour, I should have called but email, facebook and text are definitely easier when you suffer badly from foot in mouth syndrome, but I’m not immune even using the written word as you’ve already discovered.
Anyway the point to this email is to make it absolutely clear that you are not normal, you’ve excelled in the a world not renowned for its acceptance of women, you’ve tackled meningitis at a time in your life when you should be flaunting your looks and youth not rebuilding your life with a body that differs to the one you were born with. You’ve married and divorced with grace, you’ve had depression and beaten it. You’ve bought your dream home, continued with the career you love. You’re furiously loyal to the people you’ve chosen to keep close to you and none of it is in any way “normal”.
Extraordinary is a better word for your adventures so far and Extraordinary will be the best word for your future life too.
Thursday, 16 June 2011
Acceptance
I loved my life.
I loved my new job, the company I work for.
But, the gradual lack of that part of my life over the last 6 months - which had been so substantial - has brought a new understanding. Whilst it would really take something for me to lose my confidence, my self-esteem in the diminishing world I inhabit is lowered. I've just realised you see a woman who is unwell; and indeed, she is.
Is this is what I mean about acceptance?
One of the best compliments paid to me by a customer at the end of a pitch was ".....you bring many things to the table Sarah, but the best thing you do is make it real for people.....".
There was some science to the way I did that - I didn't spend my own money earning a masters degree for no good reason - and it's what the HR and Change Management professionals call the Change Curve. It is a model or process to describe how individuals deal with substantial changes in their career or job situation.
However, the "curve" is actually based on a model introduced in Elizabeth Kübler-Ross's 1969 book, On Death and Dying. The Model of Coping with Dying was based on her research and interviews with more than 500 dying patients.
It describes, in five discrete stages, a process by which people cope with and deal with grief and tragedy, especially when diagnosed with a terminal illness. The stages are:
1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance
Kübler-Ross claimed these steps do not necessarily come that exact order, nor are all steps experienced by all patients, though patients will always experience at least two. Let me describe how these stages are characterised:
1. Denial — "I feel fine."; "This can't be happening, not to me."
This feeling is generally replaced with a heightened awareness of possessions - would that explain my addiction to Internet shopping? And with concern for individuals that will be left behind after death.
2. Anger — "Why me? It's not fair!"; "How can this happen to me?"
Eerr, yep, done a little bit of that, I've had my fair share I think...
3. Bargaining — "Just let me see my kids graduate"
Apparently a negotiation is made with a higher power in exchange for a reformed lifestyle. Wouldn't know, would never bargain or negotiate, certainly not in this way.
4. Depression — "I'm so sad, why bother with anything?"
This process allows the dying person to disconnect from things of love and affection. I recognise my old friend depression, and thats why he's not allowed though the door ... Apart from the odd crying jag.
5. Acceptance — "It's going to be okay."; "I can't fight it, I may as well prepare for it."
In this last stage, the individual begins to come to terms with her/his mortality.
So here I am. Acceptance.
Or pretty much bouncing around between denial and acceptance.
But my newly established, ever decreasing world has given me some ideas. It took me a few years, but I have learned that we have to accept the consequences of our choices, our thoughts and actions. Along with Wilson, it was my job to teach Darcey that she is responsible for her own life, nobody else is. Now I've got to influence and demonstrate that in a different way.
That's where I have some ideas, but I need your help to test something.
I need you to describe my most marked characteristic in one word - such as you know me.
What's the one thing that captures what you know about me?
I don't care if I won't like it - I just need a word.
Answers on email, facebook, postcards etc
PLEASE!
I loved my new job, the company I work for.
But, the gradual lack of that part of my life over the last 6 months - which had been so substantial - has brought a new understanding. Whilst it would really take something for me to lose my confidence, my self-esteem in the diminishing world I inhabit is lowered. I've just realised you see a woman who is unwell; and indeed, she is.
Is this is what I mean about acceptance?
One of the best compliments paid to me by a customer at the end of a pitch was ".....you bring many things to the table Sarah, but the best thing you do is make it real for people.....".
There was some science to the way I did that - I didn't spend my own money earning a masters degree for no good reason - and it's what the HR and Change Management professionals call the Change Curve. It is a model or process to describe how individuals deal with substantial changes in their career or job situation.
However, the "curve" is actually based on a model introduced in Elizabeth Kübler-Ross's 1969 book, On Death and Dying. The Model of Coping with Dying was based on her research and interviews with more than 500 dying patients.
It describes, in five discrete stages, a process by which people cope with and deal with grief and tragedy, especially when diagnosed with a terminal illness. The stages are:
1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance
Kübler-Ross claimed these steps do not necessarily come that exact order, nor are all steps experienced by all patients, though patients will always experience at least two. Let me describe how these stages are characterised:
1. Denial — "I feel fine."; "This can't be happening, not to me."
This feeling is generally replaced with a heightened awareness of possessions - would that explain my addiction to Internet shopping? And with concern for individuals that will be left behind after death.
2. Anger — "Why me? It's not fair!"; "How can this happen to me?"
Eerr, yep, done a little bit of that, I've had my fair share I think...
3. Bargaining — "Just let me see my kids graduate"
Apparently a negotiation is made with a higher power in exchange for a reformed lifestyle. Wouldn't know, would never bargain or negotiate, certainly not in this way.
4. Depression — "I'm so sad, why bother with anything?"
This process allows the dying person to disconnect from things of love and affection. I recognise my old friend depression, and thats why he's not allowed though the door ... Apart from the odd crying jag.
5. Acceptance — "It's going to be okay."; "I can't fight it, I may as well prepare for it."
In this last stage, the individual begins to come to terms with her/his mortality.
So here I am. Acceptance.
Or pretty much bouncing around between denial and acceptance.
But my newly established, ever decreasing world has given me some ideas. It took me a few years, but I have learned that we have to accept the consequences of our choices, our thoughts and actions. Along with Wilson, it was my job to teach Darcey that she is responsible for her own life, nobody else is. Now I've got to influence and demonstrate that in a different way.
That's where I have some ideas, but I need your help to test something.
I need you to describe my most marked characteristic in one word - such as you know me.
What's the one thing that captures what you know about me?
I don't care if I won't like it - I just need a word.
Answers on email, facebook, postcards etc
PLEASE!
Wednesday, 8 June 2011
June
First week in June spent in Padstow, Cornwall.
Number of :
1. Pasties : one each
2. Cream Teas : one each
3. Rick Stein establishments eaten in : 3. The Seafood Restaurant, Fish & Chip, The Cafe
4. Ice creams : one a day for Sarah? That's what I'm admitting to. Wilson as you know is "not a sweet hand". However, his consumption of hand cooked crisps is classified.
5. Bodmin Beast sightings : nil
Hours spent foot dangling at the harbour: at least four a day....
Grandpa is still hearing echoes of the noise one excited granddaughter can make in their house, and Nana has remembered that sometimes work is a relaxing alternative to playtime at the zoo when all three grandchildren are excited.
As to the rest of June, I am getting match fit for the big dose of chemo. I've dropped the steroid dose and as a result feel much better in myself, particularly losing a lot of the fluid I've been retaining that feels like is strangling me. My speech and fine motor functions are not perfect, but I'll take that balance for now. You may need to bear with me as I speak more slowly, and you may need to read between the lines if it sounds like I missed a word.
January 18th 2011 - 6 months ago. The Multi-Disciplinary Team that make up Neurosurgery, Neuroscience and Oncology between the John Radcliffe and Royal Berkshire Hospitals gave me a little A4 photocopied sheet that confirmed I had been diagnosed with a Grade 4 Glioblastoma Multiforme. Having removed as much of the tumour as they could without me actually losing brain function, I was discharged from hospital and embarked on this journey.
What the heck happened to those 6 months then??!!
This is no laughing matter, people! I've done so much and yet so little.
We got married for heavens sake!
Supernanny is leaving in the summer to embark on her new life.
Darcey is off to full time school in September and Katy Perry is her favourite singer (today).
Good friends have got good new jobs.
Old family have reconnected for me in a way I would never have imagined.
Elaine, one of my best and clearly talented friends wrote, composed and recorded my own song - it's called Tarnished Angel.
As I write these words and more come to mind, I am reminded that life just continues and that death and taxes are just a part of that. My family lost a matriarch, and another much loved matriarch I know suffered a terrible stroke last month.
That neurosurgeon, and my oncologist both told us the odds were 12-14 months, though both admitted they're stacked in my favour for longer than that. Well move aside tuna, I've got things to do, memories to make, people to see, places to visit. I'm not bloody planning Christmas yet but you can bet your life I'll expect to see one or two of you here.
Now, Phase 2 of Battle Plan
Number of:
1. Pamper sessions booked in June : 4
2. Celebratory Michelin star lunches for new job : 1 (Go get 'em Clodagh)
3. Graduation Ceremonies "You're a Doctor" : 1 (Go get 'em Lauren)
4. First class train travel to Paris : 1
5. 50th birthday BBQ : 1. Best friend's husband...which means he's my friend too
6. Hours spent sleeping during day : as many as I need, I promise.
Number of :
1. Pasties : one each
2. Cream Teas : one each
3. Rick Stein establishments eaten in : 3. The Seafood Restaurant, Fish & Chip, The Cafe
4. Ice creams : one a day for Sarah? That's what I'm admitting to. Wilson as you know is "not a sweet hand". However, his consumption of hand cooked crisps is classified.
5. Bodmin Beast sightings : nil
Hours spent foot dangling at the harbour: at least four a day....
Grandpa is still hearing echoes of the noise one excited granddaughter can make in their house, and Nana has remembered that sometimes work is a relaxing alternative to playtime at the zoo when all three grandchildren are excited.
As to the rest of June, I am getting match fit for the big dose of chemo. I've dropped the steroid dose and as a result feel much better in myself, particularly losing a lot of the fluid I've been retaining that feels like is strangling me. My speech and fine motor functions are not perfect, but I'll take that balance for now. You may need to bear with me as I speak more slowly, and you may need to read between the lines if it sounds like I missed a word.
January 18th 2011 - 6 months ago. The Multi-Disciplinary Team that make up Neurosurgery, Neuroscience and Oncology between the John Radcliffe and Royal Berkshire Hospitals gave me a little A4 photocopied sheet that confirmed I had been diagnosed with a Grade 4 Glioblastoma Multiforme. Having removed as much of the tumour as they could without me actually losing brain function, I was discharged from hospital and embarked on this journey.
What the heck happened to those 6 months then??!!
This is no laughing matter, people! I've done so much and yet so little.
We got married for heavens sake!
Supernanny is leaving in the summer to embark on her new life.
Darcey is off to full time school in September and Katy Perry is her favourite singer (today).
Good friends have got good new jobs.
Old family have reconnected for me in a way I would never have imagined.
Elaine, one of my best and clearly talented friends wrote, composed and recorded my own song - it's called Tarnished Angel.
As I write these words and more come to mind, I am reminded that life just continues and that death and taxes are just a part of that. My family lost a matriarch, and another much loved matriarch I know suffered a terrible stroke last month.
That neurosurgeon, and my oncologist both told us the odds were 12-14 months, though both admitted they're stacked in my favour for longer than that. Well move aside tuna, I've got things to do, memories to make, people to see, places to visit. I'm not bloody planning Christmas yet but you can bet your life I'll expect to see one or two of you here.
Now, Phase 2 of Battle Plan
Number of:
1. Pamper sessions booked in June : 4
2. Celebratory Michelin star lunches for new job : 1 (Go get 'em Clodagh)
3. Graduation Ceremonies "You're a Doctor" : 1 (Go get 'em Lauren)
4. First class train travel to Paris : 1
5. 50th birthday BBQ : 1. Best friend's husband...which means he's my friend too
6. Hours spent sleeping during day : as many as I need, I promise.
Thursday, 2 June 2011
New Plan
So it's pretty clear.
Wilson captured it perfectly for me this morning: I am at war with steroids, am on a constant march towards a better drug regime and we're all pretty fed up with it.
The instruction from my oncologist is that this is mine to manage, the swelling I suffered is completely normal; and no, we don't know whether it will happen again. Could have been a one-off, it might not be. Moreover, the difference between 16mg per day and the current 24mg per day is NOT an additional 50% effectiveness. The next round of chemo does have a window, and I do need to reduce the drug load to give myself some headroom just in case.
So, I opted for the second round on 10th June, I will reduce my steroids between now and then down to as little as I can to "make me feel good". My speech is ok, my reading is poor, my hand has lost some sensation, but you know what, I can live with all that far better than the side effects of everything else. Nothing is getting worse, and that's the key indicator. It may just be the next "normal".
So, I'm done with the complaining. I may well have more than a passing resemblance to Boy George in his drugs phase, though I have a better beard, it IS in my control. I've got work to do now to get my energy back, and I know that has to include taking appropriate rest and care. In the meantime I apologise to my husband for being at war, and I promise my daughter we will have more Mummy-Darcey time, finding more fun words for Mummy to say.
And to you all accompanying me on this journey, thank you. What bloody depressing reading! I may be quiet from time to time, but don't respond to that, I'd really rather go back to the gallows humour!
Wilson captured it perfectly for me this morning: I am at war with steroids, am on a constant march towards a better drug regime and we're all pretty fed up with it.
The instruction from my oncologist is that this is mine to manage, the swelling I suffered is completely normal; and no, we don't know whether it will happen again. Could have been a one-off, it might not be. Moreover, the difference between 16mg per day and the current 24mg per day is NOT an additional 50% effectiveness. The next round of chemo does have a window, and I do need to reduce the drug load to give myself some headroom just in case.
So, I opted for the second round on 10th June, I will reduce my steroids between now and then down to as little as I can to "make me feel good". My speech is ok, my reading is poor, my hand has lost some sensation, but you know what, I can live with all that far better than the side effects of everything else. Nothing is getting worse, and that's the key indicator. It may just be the next "normal".
So, I'm done with the complaining. I may well have more than a passing resemblance to Boy George in his drugs phase, though I have a better beard, it IS in my control. I've got work to do now to get my energy back, and I know that has to include taking appropriate rest and care. In the meantime I apologise to my husband for being at war, and I promise my daughter we will have more Mummy-Darcey time, finding more fun words for Mummy to say.
And to you all accompanying me on this journey, thank you. What bloody depressing reading! I may be quiet from time to time, but don't respond to that, I'd really rather go back to the gallows humour!
Wednesday, 25 May 2011
Brain Freeze
Royal Wedding Day - when my oncologist suggested he would be working on that day, we thought was it an ideal day for a trip to the hospital...no traffic, no waiting around in clinic, easy parking etc. We could get in and out of Dodge fairly quickly. What I failed to notice was the timing of my appointment - 11am - and the timing of a certain other girl's appointment at the altar. And of course, just because we were high on the heels of our own marriage, it did not mean that the nurses and staff on duty that day didn't go all out, baking cakes, bringing food, creating a raffle, etc.
We were due for lunch at my "second" parents house, and as we sat around waiting, I remember feeling really uncharitable because there were women there who can only sit for hours while they wait for toxic chemicals to drip through their veins. For two hours, we just sat and waited until our turn; got the drugs, got the instructions and then toddled off.
Right now, at the time of writing, that just serves me right. I took the chemo and thought I was fine, dealing with it just like I had the radiotherapy, but that so far from the truth it is just not funny.
I started my 5 days of pills that same day, 29th April, keen to get started. After about 4 days got some stinking headaches and started to lose my speech and motor skills again just like I did in February. I did the right things and spoke to the oncology team, we raised my drugs doses "until the symptoms subside" and to be honest, I just carried on regardless, popping paracetamol and codeine occasionally. However, I neglected to ask what I should do if my symptoms got worse...and they did. Early Sunday morning (8th) I panicked, thinking I was having seizures again.
Cue ambulance, A&E and a brain scan, showing a swelling around the size of an orange: that is to say, the entire available A&E staff watched while we looked at a picture that measured 9cm x 6cm of swelling. You know your brain normally has that sort of worm-like look to it? Well mine looked like fat slugs! I listened as I was told there was some evidence of bleeding and again, I sat at there thinking "you'd imagine something would hurt, wouldn't you?"
I was scared. Actually for the first time I am scared, properly. I think.
The A&E guys doubled my steroid dose as my treatment. The on-call registrar offered me a bed, or to go home, and the measure of how scared I was is that I stayed in the ward that night so that I could see my oncologist. He seemed unconcerned, telling that the A&E comments were unhelpful. It's called "pseudo disease progression”. We made a plan to reduce the drugs dose over the next couple of weeks yet again, and off I went.
And then, that same week, that my maternal grandmother (last grandparent) suddenly died after a lengthy period of her own in hospital. I was living with her when I got meningitis all those years ago, and we were once very, very close. I called her Mum, and I'm ashamed to say I had neglected her recently. I missed the funeral because we were heading off for some experimental treatment which I was hoping to get in involved in.
That was a trip away from home for 5 days, and was an absolute whirlwind and completely overwhelming. Headaches became daily, though I needn't think too much of it because of excitement of the trip. As it happens, I had an MRI scan, and they measured the swelling in my brain too - 100mm x 62mm x 58mm - one week after the CT scan in A&E. So...something definitely not right going on up here. We got back home and I realised that I had never asked what I should do if my symptoms got worse, let alone not subside.
Add it all up, and it's a far cry from the fantastic wedding day we had, and I am sitting on 4 weeks of headaches, loss of speech, loss of motor function, inability to think properly - the fog came back. I managed an email conversation with my oncologist and he's bumped my steroids to an even higher amount; though I am pleased to say my blood sugars are normal (low risk diabetes), blood pressure normal. But of course, I am trapped in a beached whale suit, and I have grown both beard and moustache; I have become terribly weak, stairs are very hard work, but I know I must keep moving. I'll do anything to reduce this swelling though; I still can't think straight, and I still can't read a bedtime story to Darcey.
But you know what the worse thing is? I have seen enough hospital dramas to know that a massive swelling or bleed in my brain will kill me before the bloody tumour does. Now THAT scares me.
This is hell.
You know there is something afoot when Mrs Manson goes quiet...and now you know what and why.
We are due off on our honeymoon for the spring bank holiday, and I am due for my next round of chemo at the same time. I am going to clinic on Friday, and for the last week and a half have taken the unprecedented step of completely going to ground and not seeing anyone or doing anything. I do not know what is going to happen next. It is clear to me that I still have slugs not worms in my head and I really need to rebuild some strength and learn to speak again.
So, thank you for all your messages and thoughts, they mean so much to me. As I said once before, if I don't answer, it's because I can't. I am fed up now, I am not in control and I need to be so much more than just this swelling.
Back soon!!
We were due for lunch at my "second" parents house, and as we sat around waiting, I remember feeling really uncharitable because there were women there who can only sit for hours while they wait for toxic chemicals to drip through their veins. For two hours, we just sat and waited until our turn; got the drugs, got the instructions and then toddled off.
Right now, at the time of writing, that just serves me right. I took the chemo and thought I was fine, dealing with it just like I had the radiotherapy, but that so far from the truth it is just not funny.
I started my 5 days of pills that same day, 29th April, keen to get started. After about 4 days got some stinking headaches and started to lose my speech and motor skills again just like I did in February. I did the right things and spoke to the oncology team, we raised my drugs doses "until the symptoms subside" and to be honest, I just carried on regardless, popping paracetamol and codeine occasionally. However, I neglected to ask what I should do if my symptoms got worse...and they did. Early Sunday morning (8th) I panicked, thinking I was having seizures again.
Cue ambulance, A&E and a brain scan, showing a swelling around the size of an orange: that is to say, the entire available A&E staff watched while we looked at a picture that measured 9cm x 6cm of swelling. You know your brain normally has that sort of worm-like look to it? Well mine looked like fat slugs! I listened as I was told there was some evidence of bleeding and again, I sat at there thinking "you'd imagine something would hurt, wouldn't you?"
I was scared. Actually for the first time I am scared, properly. I think.
The A&E guys doubled my steroid dose as my treatment. The on-call registrar offered me a bed, or to go home, and the measure of how scared I was is that I stayed in the ward that night so that I could see my oncologist. He seemed unconcerned, telling that the A&E comments were unhelpful. It's called "pseudo disease progression”. We made a plan to reduce the drugs dose over the next couple of weeks yet again, and off I went.
And then, that same week, that my maternal grandmother (last grandparent) suddenly died after a lengthy period of her own in hospital. I was living with her when I got meningitis all those years ago, and we were once very, very close. I called her Mum, and I'm ashamed to say I had neglected her recently. I missed the funeral because we were heading off for some experimental treatment which I was hoping to get in involved in.
That was a trip away from home for 5 days, and was an absolute whirlwind and completely overwhelming. Headaches became daily, though I needn't think too much of it because of excitement of the trip. As it happens, I had an MRI scan, and they measured the swelling in my brain too - 100mm x 62mm x 58mm - one week after the CT scan in A&E. So...something definitely not right going on up here. We got back home and I realised that I had never asked what I should do if my symptoms got worse, let alone not subside.
Add it all up, and it's a far cry from the fantastic wedding day we had, and I am sitting on 4 weeks of headaches, loss of speech, loss of motor function, inability to think properly - the fog came back. I managed an email conversation with my oncologist and he's bumped my steroids to an even higher amount; though I am pleased to say my blood sugars are normal (low risk diabetes), blood pressure normal. But of course, I am trapped in a beached whale suit, and I have grown both beard and moustache; I have become terribly weak, stairs are very hard work, but I know I must keep moving. I'll do anything to reduce this swelling though; I still can't think straight, and I still can't read a bedtime story to Darcey.
But you know what the worse thing is? I have seen enough hospital dramas to know that a massive swelling or bleed in my brain will kill me before the bloody tumour does. Now THAT scares me.
This is hell.
You know there is something afoot when Mrs Manson goes quiet...and now you know what and why.
We are due off on our honeymoon for the spring bank holiday, and I am due for my next round of chemo at the same time. I am going to clinic on Friday, and for the last week and a half have taken the unprecedented step of completely going to ground and not seeing anyone or doing anything. I do not know what is going to happen next. It is clear to me that I still have slugs not worms in my head and I really need to rebuild some strength and learn to speak again.
So, thank you for all your messages and thoughts, they mean so much to me. As I said once before, if I don't answer, it's because I can't. I am fed up now, I am not in control and I need to be so much more than just this swelling.
Back soon!!
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