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!!
Thursday 5 May 2011
Easter Holidays
♫♫…there's nothing sweet about me…♫♫ .... Gabriela Chilme
A few words / phrases which have been used to describe me over the years – feel free to add your own:
· Assertive
· Energetic
· Bossy
· Independent (fiercely)
· Elemental
· Takes no prisoners
· Straight talking
· No nonsense
· Irritating
· Loud
What?
You think that was just before the tumour?
Yes, other parts of my personality have been described as loyal, generous, loving, funny…but when did people start expecting me to be nice? I know it is really bad of me to say this, and I know I should be more grateful, but I’M NOT DYING YET, people! I haven't had a personality transplant, I'm still me. Yes, I will be shameless when it comes to playing the "dying" card….but hey, so will you when I'm in the car and we use my blue badge!
I may have been filling my time baking bread and organising a wedding, but I have too much time on my hands and too many drugs in my system to be all sweetness and light. I'm the same selfish and vain individual I always was. The rest of my brain still works, though I think it might be in serious need of some stimulation. I'm not physically weak or incapable yet. You don't need to carry my bags; you don't need to get me a glass of water when I'm lying like a beached whale on the sofa; you don't need to wait on me hand and foot. In answer to your question, Yes, I'm tired - but apparently I'm supposed to be! How bored with it all are you going to be when I defy all the odds and I'm still lying around like the Queen of Sheba 3 years from now?
I apologise. I think I'm suffering what Sarah laughingly calls "roid rage". I’ve just realised I’ve been on this rant before. I'm sick to my back teeth of steroids. I did my best on my wedding day, but I still had a moon face and dough-girl silhouette; it doesn’t matter how many times you tell me I’m still me, I still don’t recognise my face in the mirror. My fingers are so swollen, I couldn't and still can't get my rings on; I'm retaining so much water around my ankles and knees, I can't wear trousers I bought a month ago. I have a lovely layer of fine hair growing around my three necks, and first time in my life I had to wax my lip! I want to cry one minute and shout the next; I want to see everyone, but I want to hide away from the world. Oddly, I couldn't care less about my nearly bald head, but I really would like to wear my wedding ring.
Common side effects of Dexamethasone
· Indigestion or heartburn
· Increased appetite and weight gain
· Swollen hands, feet or ankles from water retention
· Increased risk of infection
· Changes in blood sugar levels (risk of diabetes)
· Changes in mood and behaviour
· Difficulty sleeping
Rarer side effects
· Eye problems such as cataracts, infections or glaucoma
· Changes to your face (Cushings syndrome) - you may develop a swollen or puffy face, dark marks, acne or facial hair
· Muscle wasting - your legs may feel weaker and walking or climbing stairs may be more difficult.
· Weaker bones due to bone loss (osteoporosis)
· Raised blood pressure
Of the list above, I'm suffering most of the side effects, though don't appear to have any problems with blood pressure or indigestion, and I am reducing the dose. But all this is preparation of course....29th April is the first day of my new chemotherapy treatment.
It will be my luck that my new five day cocktail of drugs will cause a load of swelling, and I will end up on yet more steroids.
Roll on next week......
Saturday 16 April 2011
The Last Two Weeks
So there I am - I've completed the first round of treatment - radiotherapy with concurrent chemotherapy. Not without it's complications, but nothing major. I have apparently dealt with it all rather well, and so I have tried to reduced my steroid dose since I am feeling chirpy and ... well ... I'm feeling well!
My routine is out the window, so I have been distracted by all sorts of fun stuff - lots of lunches, manicures, my birthday spa day with my sister-in-law, wedding planning, completing my blogs etc. So have I been good about napping in the afternoon? Maybe not as good as I could. I have tried, but as my steroids have gone down, I have learned the art of sleeping through the night again, and so lying in bed at 3pm when there's so much to do has been hard.
And then it hits. This bottomless pit of exhaustion. They warned me I might get tired, but what went before was just a dress rehearsal. That was just because I wasn't sleeping properly. I'm too tired to clean my teeth. How I wish mum was back now.
And I paid the price for it yesterday.
I went to the docs to have a chat about this cough that I can't shift...and while I was talking to her I completely lost the power of speech. Literally, mid-sentence I looked at her in panic and tried to tell her that my right hand and arm felt like they were burning up and I couldn't feel anything. For a period of around 5 or 10 minutes I stayed like that, and then just as suddenly it disappeared. I was taken to the Nurses room while the GP phoned Neurology in Oxford and I phoned Wilson, and one of the wonderful Clinical Nurse Practitioners who provide brilliant support. She told me a number of things - firstly that the extreme exhaustion was to be expected and I didn't bring this upon myself; that it is not unusual in the period up to 6 weeks after radiation for things to swell up a bit and for the brain to respond accordingly. It was probably a partial seizure, I would probably need a CT Scan, and the outcome would likely be an increase in steroids and anti-seizure meds.
The GP returned, with an ambulance, and an instruction from Oxford to get a CT Scan as soon as possible from Reading. So off I went - with the same Paramedic who treated my ridiculous foot stunt a few weeks ago. Half way there, the flashing lights went on and we overtook Wilson in the car as the same thing happened again - about 4 minutes this time. As a result, we went straight into A&E, where it happened twice more.
The outcome - exactly as predicted. I had one more minor episode last night at home, but the increase in both meds appears to have to done the trick in as much as I haven't had any more partial seizures. Five in one day though, not bad, huh?!
Today, I am feeling some slight effects of dysphasia and some tingling in my arm. It's not huge, but it's definitely not where I was two weeks ago. You can probably tell - despite my careful editing and re-reading, I have probably missed some words and spelling in this post.
Great timing - I'm going for my "hen" tomorrow - which thankfully is a very quiet affair with my best friends. We've got Clare back in the UK for this one, but we've lost Emma who had a previous with her husband, three sons, bump and Easyjet. I know where I'd rather be tomorrow!
So, the good news is that the CT scan showed the tumour has reduced in size a bit, from 58x50x51mm to 53x44x37mm. And I couldn't be in a better set of capable hands tomorrow. I have spent the day in bed today in preparation, and the only thing I have done is complete these blogs and sleep.
Post wedding writing will be better!
My routine is out the window, so I have been distracted by all sorts of fun stuff - lots of lunches, manicures, my birthday spa day with my sister-in-law, wedding planning, completing my blogs etc. So have I been good about napping in the afternoon? Maybe not as good as I could. I have tried, but as my steroids have gone down, I have learned the art of sleeping through the night again, and so lying in bed at 3pm when there's so much to do has been hard.
And then it hits. This bottomless pit of exhaustion. They warned me I might get tired, but what went before was just a dress rehearsal. That was just because I wasn't sleeping properly. I'm too tired to clean my teeth. How I wish mum was back now.
And I paid the price for it yesterday.
I went to the docs to have a chat about this cough that I can't shift...and while I was talking to her I completely lost the power of speech. Literally, mid-sentence I looked at her in panic and tried to tell her that my right hand and arm felt like they were burning up and I couldn't feel anything. For a period of around 5 or 10 minutes I stayed like that, and then just as suddenly it disappeared. I was taken to the Nurses room while the GP phoned Neurology in Oxford and I phoned Wilson, and one of the wonderful Clinical Nurse Practitioners who provide brilliant support. She told me a number of things - firstly that the extreme exhaustion was to be expected and I didn't bring this upon myself; that it is not unusual in the period up to 6 weeks after radiation for things to swell up a bit and for the brain to respond accordingly. It was probably a partial seizure, I would probably need a CT Scan, and the outcome would likely be an increase in steroids and anti-seizure meds.
The GP returned, with an ambulance, and an instruction from Oxford to get a CT Scan as soon as possible from Reading. So off I went - with the same Paramedic who treated my ridiculous foot stunt a few weeks ago. Half way there, the flashing lights went on and we overtook Wilson in the car as the same thing happened again - about 4 minutes this time. As a result, we went straight into A&E, where it happened twice more.
The outcome - exactly as predicted. I had one more minor episode last night at home, but the increase in both meds appears to have to done the trick in as much as I haven't had any more partial seizures. Five in one day though, not bad, huh?!
Today, I am feeling some slight effects of dysphasia and some tingling in my arm. It's not huge, but it's definitely not where I was two weeks ago. You can probably tell - despite my careful editing and re-reading, I have probably missed some words and spelling in this post.
Great timing - I'm going for my "hen" tomorrow - which thankfully is a very quiet affair with my best friends. We've got Clare back in the UK for this one, but we've lost Emma who had a previous with her husband, three sons, bump and Easyjet. I know where I'd rather be tomorrow!
So, the good news is that the CT scan showed the tumour has reduced in size a bit, from 58x50x51mm to 53x44x37mm. And I couldn't be in a better set of capable hands tomorrow. I have spent the day in bed today in preparation, and the only thing I have done is complete these blogs and sleep.
Post wedding writing will be better!
Weeks 5-6
OK, so if you're reading this now, this is the fourth posting I've made in less then 24 hours, so you've got a ways to go to catch up! Sorry; some of my posts I've had half written since the beginning of March, but life and treatment have got in the way of completing them. They are not nearly as well written as my first couple of meanderings, but it will bring you up to date.
After my little hiatus back in the John Radcliffe Neurology/Neurosurgery ward (I think they wanted to keep me there just to keep the students out of the way and entertained, actually!) I went straight back into the final phase of my radiotherapy. Phase 2 consisted of a much higher dose of radiation to a very focused areas of my tumour - as opposed to the all-over radiation I've been receiving.
1. Seizures: none
2. Tummy problems: none
3. Headaches: none
4. Steroids: experimenting between 4 and 6mg per day. Still hate the fat cheeks, the body swelling and other side effects.
5. Wine consumption: low
6. Chocolate consumption: high.
7. Motor function on right side: good, but feeling tingling as playing with steroids
8. Dysphasia: non-existent
9. General feeling of wellbeing: downgraded to good
10. Online shopping: nil
I have kept these two weeks quite quiet, concentrating on wedding planning - and culminating in shopping for The Dress with three of my best girlfriends and the help of a Personal Shopper at Selfridges, Oxford Street. I am now the proud owner of a Nicole Farhi dress, a DKNY jacket, and a pair of Vivienne Westwood boots - and that's all I'm saying on the matter until after next Thursday!
All thanks to Clodagh who organised it all - we met at the Hix Bar for lunch, toodled on up to Personal Shopping, and sat around drinking champagne while somebody else ran around the shop scooping up things for me to try on. I have to say, the most exhausting thing I did all day was to lever myself into a pair of Spanx - and believe me when I tell you that was hard work.
Mum has been with us for a couple of weeks, looking after house and home - I don't think I've ever had as much ironing done or cooking done! It is almost like living in a hotel where everything is done for you, but I have much enjoyed our glass of wine and a cheese and biscuit last thing at night. She deserves it and apparently red wine is good for me, so it works all ways round.
These two weeks culminated in a Mothers Day lunch at the Watermill Theatre, for both me and Mum. The food was OK, the grounds were delightful and we'll definitely be booking the Christmas Panto there this year!
After my little hiatus back in the John Radcliffe Neurology/Neurosurgery ward (I think they wanted to keep me there just to keep the students out of the way and entertained, actually!) I went straight back into the final phase of my radiotherapy. Phase 2 consisted of a much higher dose of radiation to a very focused areas of my tumour - as opposed to the all-over radiation I've been receiving.
1. Seizures: none
2. Tummy problems: none
3. Headaches: none
4. Steroids: experimenting between 4 and 6mg per day. Still hate the fat cheeks, the body swelling and other side effects.
5. Wine consumption: low
6. Chocolate consumption: high.
7. Motor function on right side: good, but feeling tingling as playing with steroids
8. Dysphasia: non-existent
9. General feeling of wellbeing: downgraded to good
10. Online shopping: nil
I have kept these two weeks quite quiet, concentrating on wedding planning - and culminating in shopping for The Dress with three of my best girlfriends and the help of a Personal Shopper at Selfridges, Oxford Street. I am now the proud owner of a Nicole Farhi dress, a DKNY jacket, and a pair of Vivienne Westwood boots - and that's all I'm saying on the matter until after next Thursday!
All thanks to Clodagh who organised it all - we met at the Hix Bar for lunch, toodled on up to Personal Shopping, and sat around drinking champagne while somebody else ran around the shop scooping up things for me to try on. I have to say, the most exhausting thing I did all day was to lever myself into a pair of Spanx - and believe me when I tell you that was hard work.
Mum has been with us for a couple of weeks, looking after house and home - I don't think I've ever had as much ironing done or cooking done! It is almost like living in a hotel where everything is done for you, but I have much enjoyed our glass of wine and a cheese and biscuit last thing at night. She deserves it and apparently red wine is good for me, so it works all ways round.
These two weeks culminated in a Mothers Day lunch at the Watermill Theatre, for both me and Mum. The food was OK, the grounds were delightful and we'll definitely be booking the Christmas Panto there this year!
February - Birthdays!
In amongst all the emotional stuff, and the treatment stuff, we do of course have to continue to living. I have been struck by Jennifer Griffin's blog about her "new normal" and I have some thoughts on that myself this week. Before I get to that though, I thought I would share my three birthday celebrations this year (food features very highly here!).
The first was 173years, celebrated with my sister-in-law's 40th, my Nearly Husband's 50th, my brother's 40th, and finally my 43rd! We were joined by a couple of old friends and family (having had to postpone for a day thanks to a day in hospital for me) and we passed a very pleasant afternoon drinking wine and eating lovely home roasted organic meats....
The second was on my birthday weekend, and another chocolate cake featured large here, and I can't believe I didn't get a picture of it - Ginny's Devil's Food Cake. It was fantastic. I went out for lunch with Sarah, got home to find Wilson and Darcey on their way back from music lessons. Wilson then disappeared with his mobile phone and Darcey was insistent on the fact that Gilesy was coming to my birthday party. Now Gilesy for those of you that don't know, lives in the South West of France, and I had already agreed to Skype with her later in the day. So I thought Darcey was confused, obviously - she's only got the crystal clear logic and understanding of a 4 year old; I've got a 43 year old brain with a growth! Imagine my surprise then, when Dawn knocked on the door, laden with gifts and flowers etc. It was apparent that this was a surprise to Wilson too, who was still messing about with mobiles and text messages. So, in the excitement, I registered that he had opened the front door, but didn't really pay much attention, until he walked in with The Cake.
So, stop just for a moment. My daughter is telling me that one of my best friends is going to arrive from France; another old friend has arrived at the door, and Wilson now has what is clearly a hand made chocolate cake in his hands. Then appears around the door a familiar face - looks distinctly like Giles mother Ginny, which would explain the cake. Then I realise it is actually Giles's sister, Alix, with whom I used to live - and who actually lives in North Carolina! Behind her is her husband, and behind him, a very satisfied Wilson and Giles who between them have really pulled a fast one. Trying not to tread in the chocolate cake, I am completely overwhelmed and utterly gobsmacked.
And then, by an amazing feat of planning and travel effort, the Girls managed to all get together on the same day at the same time - apart from Clare who was excused by the fact that getting over from the British Virgin Islands was a bit hard to do - for lunch at The Vineyard. Don't go there, you won't like it. We have to try it again before we can wholeheartedly recommend it....
The women you see in this picture are amazing, a better bunch of friends you couldn't find. We have known each other for more years than we care to mention. I know I've talked about them all before, between us we have Company Directors, Professors, Directors, Business Owners etc - professionals all - and we are all Mothers. We have such shared history, it was a joy to reconnect and remember all that over a fantastic lunch. I am lucky to have them.
Friday 15 April 2011
Weeks 4-5
1. Seizures: none
2. Tummy problems: none
3. Headaches: none
4. Steroids: halved the dose. Sleeping better, still look like Bubbles DeVere.
5. Wine consumption: low
6. Chocolate consumption: high.
7. Motor function on right side: very good
8. Dysphasia: non-existent
9. General feeling of wellbeing: excellent
10. Online shopping: nil
I have kept this week quiet, concentrating on wedding planning and rest rather than doing too much in the way of coffee and lunches, and as a result, a few of you have been asking where I've been. The house has been busy, with my Navy brother and his girlfriend arriving from Gibraltar; the day they left, #1 Daughter arrived on her way to Geneva, and I made meatballs for one of Darcey's playdates.
As i have said before, I am not a hero, and by the end of this week, it became apparent that I haven't done quite enough to promote healing and keep my lowered immune system safe. I enjoyed a Friday night Curry and Movie night with supernanny, while Nearly Husband went out with the boys. In gales of laughter, Amanda took photos of the back of my head so I could see the extent to which my hair has gone very patchy. It's like a monk's tonsure in reverse and I'm not surprised Darcey hates it. Anyway, as she was taking the pics, Amanda asked me if I knew my scar hadn't healed up properly - and that was news to me.
Over the weekend, I kept looking at it and realised by Sunday that even I could see clearly that I had a hole in my head. Which I needed like a hole in the head, frankly. Cue discussions between surgeons in Oxford and Oncologist in Reading on Monday morning and by that afternoon, I had a call from the bed manager in Oxford telling me they had a bed for me and I was on the surgical list for that night. I have a minor staphylococcus infection on my scalp, and the threat of that "colonising" - the sound of which was enough to make me acquiesce!
So here I am, on the first day of Week 5, back in hospital. This was not supposed to happen and now means my second phase of treatment has to be postponed for a little while. This is not good; the second phase is more focused, directed radiation to specific parts of my tumour, and the whole process has a cumulative effect, so stopping now must be for a short time only.
24 hours of being nil by mouth and on a drip, and I'm out of surgery. The good news is they have removed the reservoir because the cyst has gone! Hurrah! The bad news is they want me to stay in for a couple of days while micro-biology culture what they found - one "rod" of something unrecognisable. So Wednesday came and went; I was visited by a group of medical students who'd been told I was a good person to talk to; so I gave them my life story until their eyes glazed over. I started this blog, slept a lot and generally enjoyed a little bit of peace and quiet in my little side room. After a day and a half of regular observations - temperature, blood pressure etc - it became apparent that whatever bug had been found in my head was not making me clinically ill in any way, so I decided Thursday had to be the day of departure. Besides that, Nearly Husband and I were off for a long weekend on the Friday!
You can imagine the scene then on the Thursday morning when the Registrar tried to tell me that dependent on the outcome from micro-biology I might need to stay in another night. I pointed out that there were many more very sick people on the ward, I did not need nursing, and I absolutely was going home that day, and not taking up the bed for another night. By then I had learned that my radiotherapy could restart on the following Monday and I am pleased to say as I am writing this now, that the additional radiation did not lead to another breakdown in the scar which has healed very nicely.
2. Tummy problems: none
3. Headaches: none
4. Steroids: halved the dose. Sleeping better, still look like Bubbles DeVere.
5. Wine consumption: low
6. Chocolate consumption: high.
7. Motor function on right side: very good
8. Dysphasia: non-existent
9. General feeling of wellbeing: excellent
10. Online shopping: nil
I have kept this week quiet, concentrating on wedding planning and rest rather than doing too much in the way of coffee and lunches, and as a result, a few of you have been asking where I've been. The house has been busy, with my Navy brother and his girlfriend arriving from Gibraltar; the day they left, #1 Daughter arrived on her way to Geneva, and I made meatballs for one of Darcey's playdates.
As i have said before, I am not a hero, and by the end of this week, it became apparent that I haven't done quite enough to promote healing and keep my lowered immune system safe. I enjoyed a Friday night Curry and Movie night with supernanny, while Nearly Husband went out with the boys. In gales of laughter, Amanda took photos of the back of my head so I could see the extent to which my hair has gone very patchy. It's like a monk's tonsure in reverse and I'm not surprised Darcey hates it. Anyway, as she was taking the pics, Amanda asked me if I knew my scar hadn't healed up properly - and that was news to me.
Over the weekend, I kept looking at it and realised by Sunday that even I could see clearly that I had a hole in my head. Which I needed like a hole in the head, frankly. Cue discussions between surgeons in Oxford and Oncologist in Reading on Monday morning and by that afternoon, I had a call from the bed manager in Oxford telling me they had a bed for me and I was on the surgical list for that night. I have a minor staphylococcus infection on my scalp, and the threat of that "colonising" - the sound of which was enough to make me acquiesce!
So here I am, on the first day of Week 5, back in hospital. This was not supposed to happen and now means my second phase of treatment has to be postponed for a little while. This is not good; the second phase is more focused, directed radiation to specific parts of my tumour, and the whole process has a cumulative effect, so stopping now must be for a short time only.
24 hours of being nil by mouth and on a drip, and I'm out of surgery. The good news is they have removed the reservoir because the cyst has gone! Hurrah! The bad news is they want me to stay in for a couple of days while micro-biology culture what they found - one "rod" of something unrecognisable. So Wednesday came and went; I was visited by a group of medical students who'd been told I was a good person to talk to; so I gave them my life story until their eyes glazed over. I started this blog, slept a lot and generally enjoyed a little bit of peace and quiet in my little side room. After a day and a half of regular observations - temperature, blood pressure etc - it became apparent that whatever bug had been found in my head was not making me clinically ill in any way, so I decided Thursday had to be the day of departure. Besides that, Nearly Husband and I were off for a long weekend on the Friday!
You can imagine the scene then on the Thursday morning when the Registrar tried to tell me that dependent on the outcome from micro-biology I might need to stay in another night. I pointed out that there were many more very sick people on the ward, I did not need nursing, and I absolutely was going home that day, and not taking up the bed for another night. By then I had learned that my radiotherapy could restart on the following Monday and I am pleased to say as I am writing this now, that the additional radiation did not lead to another breakdown in the scar which has healed very nicely.
The Emotional Journey
A few people have asked about the ambulances we had to call in February. Both occasions reveal a little bit about the emotional journey we are undertaking with this 'tuna', which we continue to work through. This journey is hard. I have found writing about it to be cathartic and I have been encouraged in many ways by many people to continue to record my thoughts and feelings, so here goes a bit more of the hard stuff. I'm still not entirely sure why I am sharing it, but for all the wonderful feedback you have given me, I think I want to show that I am just ordinary, and these crazy things continue to happen.
“There are moments in life, when the heart is so full of emotion
That if by chance it be shaken, or into its depths like a pebble
Drops some careless word, it overflows, and its secret,
Spilt on the ground like water, can never be gathered together”
Henry Wadsworth Longfellow
As I have written before, I spent the first two weeks of February going slowly downhill. It started with my speech, just as it had in December. It is the oddest sensation, to open your mouth to say something but to hear something else actually come out; or worse, to be able to see the words in your mind, but be unable to say them...at all.
It is called dysphasia.
Here's the definition from BBC Health:
* People with dysphasia may have difficulty talking, understanding, listening, writing or doing numeral calculations. They may be mildly or severely affected. Everyday tasks, such as shopping or answering the phone, may be impossible.
* People with the condition can think clearly and know what they're feeling, and their intellect is maintained. They're often mistakenly thought to be drunk or mentally confused.
* Over time varying degrees of improvement occur. Many people adapt to their situation and develop coping mechanisms.
* Speech therapy can help to improve communication. Techniques such as talking slowly and repeating things, using gestures or drawings, and avoiding noisy areas can help.
* Emotional support for the individual and their carers should always be available.
I had to resort to pronouncing the first sound of a word in order to get my brain to work out the rest of the word...much like your child learning their phonetics. in addition, my ability to write, type, text, hold a knife, or do anything with my right hand became almost non-existent. It could take me 30mins to type a simple text and I just stayed off email because the thought of writing anything greater than a Twitter-length message was overwhelming. During this period, I completely lost the fine motor skills on my right side: my hand felt like it was inside a welder's glove, I could walk but didn't really feel anything, I couldn't hold Darcey's hand on that side without fear of pulling her over and I pretty much went numb all down that side.
You might imagine the frustration I felt during this time; but also imagine how anybody talking to me might have felt. It is very hard to NOT finish my sentence for me, hard to watch me - a girl who generally talks for Britain - struggle and stammer over words that should be simple enough. I saw quite a lot of people in those couple of weeks, not really realising that things were getting worse, but my frustration, anger and sense of injustice were growing.
On 1st February, Darcey asked me to read her bedtime story - a simple enough request and one that we usually enjoy enormously. On this occasion, although Darcey chose a very simple baby book, I was useless. As I stammered my way slowly through each page, Darcey took up the story and pretty much "read" it to me (like any 4yr old, learned by rote). As she snuggled down to sleep, she asked me why I kept losing my words, and told me she was angry at my scar, didn't like doctors any more, and didn't like it when I was in hospital. She was confused and angry and by the time she was settled, so was I.
I remained that way, getting more upset at the injustice of it all. I always said I was the statistic, but this really is not bloody fair. As I became more angry, my dysphasia got worse and I could not stand Nearly Husband guessing words for me. And then something mundane happened - a drink was spilled. I used it as an excuse to dash into action, get the paper towels and start clearing up. As I knelt down on the floor, the flood gates opened and I ran slap bang into an emotional wall. Head on collision, I was at the mercy of uncontrollable, intensely physical sobbing. I could not even tell you what it was about, it was such a physical response to something, I just had to stay that way until it passed. I watched my tears fall and I could not move, despite Nearly Husband's best efforts.
Eventually I was able to sit in the sofa, take some deep breaths and try to speak. As I did, we heard Amanda, Darcey's Nanny (and affectionately known as supernanny in our house) come wheezing down the stairs, asking us to call the doctors for her. I listened more closely and realised that a nasty asthma attack was going on. Now, if there's one thing guaranteed to jolt you out of self pity and introspection, it is the sound of someone really struggling to breathe. I jumped out of my sofa, ushered Amanda into it, and told Nearly Husband to sod the doctor and call an ambulance.
I have to say, if you know nothing about asthma and you encounter someone with a bad attack, always call an ambulance. The ambulance service in our counties are very clear about that, and believe me, it is a scary experience which does not give the sufferer time, like I have. I watched Amanda's eyes and saw the fear. Whilst trying to breathe, she was scared of being taken into hospital and made me promise to not let them take her. Happily, a nebuliser later and Amanda was fine; she stayed at home and notwithstanding a couple of weeks of antibiotics and steroids, she is fine now.
A week later, I was in a worsening state. I asked my clinical nurse practitioner whether this might be because the cyst in my head could have re-filled. She agreed that it was worth investigating, and on Friday 11th Feb, we spent the day hanging around the hospital, getting a CT scan and waiting while the oncology team in Reading talked to the surgical team in Oxford. My suspicions were well founded, and I spent the Saturday in hospital having it drained, accompanied by Amanda, some trash magazines and a packed lunch.
A few days after that, three days into the six week daily chemo and radiotherapy schedule, Nearly Husband and I were due to visit our wedding venue for the first time. By this time, the dysphasia symptoms had started to abate, but the problem with the motor skills on my right side were still terrible. Getting ready to leave home, my mood was not exactly happy; once again frustrated by my inability to get the right words out at the right time, I took it out on Wilson and stormed into the kitchen in a foul mood. I am not generally a violent person, but I really needed to vent my anger, so I lashed out and kicked the board directly underneath the kitchen cupboard. Did you know it's actually called a kicker board? Do you know also that the kicker board is what is attached to the front of steel rods that hold your cupboards in place? Well it is in my kitchen.
As you know, I have one stubby little foot on my right, with no toes, thanks to meningitis years ago. As you have read above, I couldn't feel much on my right side at this time....so after the end of my foot connected heavily with the steel rod, it took me 30seconds to realise that inside my ankle boot, I was developing a nasty pain. I took off my boot and stared at something that was grotesque, unrecognisable as my foot. A huge lump had appeared and my foot was turning a sickening green/purple hue.
So, cut to the chase, ambulance was called, I was shipped off to West Berks hospital, convinced I had broken what few bones I have left in my foot. An x-ray later, and a lot of sitting around with my foot up and I went home. No bones broken, but a distinct "you silly cow" feeling. It took about 3 weeks for my foot to return to a normal colour and every day I was reminded of how stupid I can be, and how ridiculous life can be.
The truth is, denial ain't just a river in Egypt. If you read between all those lines, my emotional journey is well hidden right now, and only comes out quite physically. I cannot quite comprehend what is going on here; particularly as at the time of writing, I'm feeling quite well and chirpy and all my symptoms are in remission. I don't feel angry all the time, I don't rail at the injustice of it all, I'm not in any pain and physically the drug regime has been quite tolerable. I'm just tired.
I also get quite worked up about being treated like an invalid. I am still me, I will not be diminished by a tumour and I do not need to be nursed or accompanied all the time. I hate the way the drugs have changed my appearance so I don't even recognise myself in the mirror. I am still the vital, professional, energetic woman you have always known.
I can't stand these thoughts, so I hide them. I know that they will return and I will be struck with sadness which will manifest itself physically. But, times they are a'changing. I know I can't cope completely on my own. This is my here and now; it will change again, but it is life. MY LIFE.
The old adage rings true....we're taking each day as it comes, emotions and all.
“There are moments in life, when the heart is so full of emotion
That if by chance it be shaken, or into its depths like a pebble
Drops some careless word, it overflows, and its secret,
Spilt on the ground like water, can never be gathered together”
Henry Wadsworth Longfellow
As I have written before, I spent the first two weeks of February going slowly downhill. It started with my speech, just as it had in December. It is the oddest sensation, to open your mouth to say something but to hear something else actually come out; or worse, to be able to see the words in your mind, but be unable to say them...at all.
It is called dysphasia.
Here's the definition from BBC Health:
* People with dysphasia may have difficulty talking, understanding, listening, writing or doing numeral calculations. They may be mildly or severely affected. Everyday tasks, such as shopping or answering the phone, may be impossible.
* People with the condition can think clearly and know what they're feeling, and their intellect is maintained. They're often mistakenly thought to be drunk or mentally confused.
* Over time varying degrees of improvement occur. Many people adapt to their situation and develop coping mechanisms.
* Speech therapy can help to improve communication. Techniques such as talking slowly and repeating things, using gestures or drawings, and avoiding noisy areas can help.
* Emotional support for the individual and their carers should always be available.
I had to resort to pronouncing the first sound of a word in order to get my brain to work out the rest of the word...much like your child learning their phonetics. in addition, my ability to write, type, text, hold a knife, or do anything with my right hand became almost non-existent. It could take me 30mins to type a simple text and I just stayed off email because the thought of writing anything greater than a Twitter-length message was overwhelming. During this period, I completely lost the fine motor skills on my right side: my hand felt like it was inside a welder's glove, I could walk but didn't really feel anything, I couldn't hold Darcey's hand on that side without fear of pulling her over and I pretty much went numb all down that side.
You might imagine the frustration I felt during this time; but also imagine how anybody talking to me might have felt. It is very hard to NOT finish my sentence for me, hard to watch me - a girl who generally talks for Britain - struggle and stammer over words that should be simple enough. I saw quite a lot of people in those couple of weeks, not really realising that things were getting worse, but my frustration, anger and sense of injustice were growing.
On 1st February, Darcey asked me to read her bedtime story - a simple enough request and one that we usually enjoy enormously. On this occasion, although Darcey chose a very simple baby book, I was useless. As I stammered my way slowly through each page, Darcey took up the story and pretty much "read" it to me (like any 4yr old, learned by rote). As she snuggled down to sleep, she asked me why I kept losing my words, and told me she was angry at my scar, didn't like doctors any more, and didn't like it when I was in hospital. She was confused and angry and by the time she was settled, so was I.
I remained that way, getting more upset at the injustice of it all. I always said I was the statistic, but this really is not bloody fair. As I became more angry, my dysphasia got worse and I could not stand Nearly Husband guessing words for me. And then something mundane happened - a drink was spilled. I used it as an excuse to dash into action, get the paper towels and start clearing up. As I knelt down on the floor, the flood gates opened and I ran slap bang into an emotional wall. Head on collision, I was at the mercy of uncontrollable, intensely physical sobbing. I could not even tell you what it was about, it was such a physical response to something, I just had to stay that way until it passed. I watched my tears fall and I could not move, despite Nearly Husband's best efforts.
Eventually I was able to sit in the sofa, take some deep breaths and try to speak. As I did, we heard Amanda, Darcey's Nanny (and affectionately known as supernanny in our house) come wheezing down the stairs, asking us to call the doctors for her. I listened more closely and realised that a nasty asthma attack was going on. Now, if there's one thing guaranteed to jolt you out of self pity and introspection, it is the sound of someone really struggling to breathe. I jumped out of my sofa, ushered Amanda into it, and told Nearly Husband to sod the doctor and call an ambulance.
I have to say, if you know nothing about asthma and you encounter someone with a bad attack, always call an ambulance. The ambulance service in our counties are very clear about that, and believe me, it is a scary experience which does not give the sufferer time, like I have. I watched Amanda's eyes and saw the fear. Whilst trying to breathe, she was scared of being taken into hospital and made me promise to not let them take her. Happily, a nebuliser later and Amanda was fine; she stayed at home and notwithstanding a couple of weeks of antibiotics and steroids, she is fine now.
A week later, I was in a worsening state. I asked my clinical nurse practitioner whether this might be because the cyst in my head could have re-filled. She agreed that it was worth investigating, and on Friday 11th Feb, we spent the day hanging around the hospital, getting a CT scan and waiting while the oncology team in Reading talked to the surgical team in Oxford. My suspicions were well founded, and I spent the Saturday in hospital having it drained, accompanied by Amanda, some trash magazines and a packed lunch.
A few days after that, three days into the six week daily chemo and radiotherapy schedule, Nearly Husband and I were due to visit our wedding venue for the first time. By this time, the dysphasia symptoms had started to abate, but the problem with the motor skills on my right side were still terrible. Getting ready to leave home, my mood was not exactly happy; once again frustrated by my inability to get the right words out at the right time, I took it out on Wilson and stormed into the kitchen in a foul mood. I am not generally a violent person, but I really needed to vent my anger, so I lashed out and kicked the board directly underneath the kitchen cupboard. Did you know it's actually called a kicker board? Do you know also that the kicker board is what is attached to the front of steel rods that hold your cupboards in place? Well it is in my kitchen.
As you know, I have one stubby little foot on my right, with no toes, thanks to meningitis years ago. As you have read above, I couldn't feel much on my right side at this time....so after the end of my foot connected heavily with the steel rod, it took me 30seconds to realise that inside my ankle boot, I was developing a nasty pain. I took off my boot and stared at something that was grotesque, unrecognisable as my foot. A huge lump had appeared and my foot was turning a sickening green/purple hue.
So, cut to the chase, ambulance was called, I was shipped off to West Berks hospital, convinced I had broken what few bones I have left in my foot. An x-ray later, and a lot of sitting around with my foot up and I went home. No bones broken, but a distinct "you silly cow" feeling. It took about 3 weeks for my foot to return to a normal colour and every day I was reminded of how stupid I can be, and how ridiculous life can be.
The truth is, denial ain't just a river in Egypt. If you read between all those lines, my emotional journey is well hidden right now, and only comes out quite physically. I cannot quite comprehend what is going on here; particularly as at the time of writing, I'm feeling quite well and chirpy and all my symptoms are in remission. I don't feel angry all the time, I don't rail at the injustice of it all, I'm not in any pain and physically the drug regime has been quite tolerable. I'm just tired.
I also get quite worked up about being treated like an invalid. I am still me, I will not be diminished by a tumour and I do not need to be nursed or accompanied all the time. I hate the way the drugs have changed my appearance so I don't even recognise myself in the mirror. I am still the vital, professional, energetic woman you have always known.
I can't stand these thoughts, so I hide them. I know that they will return and I will be struck with sadness which will manifest itself physically. But, times they are a'changing. I know I can't cope completely on my own. This is my here and now; it will change again, but it is life. MY LIFE.
The old adage rings true....we're taking each day as it comes, emotions and all.
Friday 4 March 2011
A Typical Week
Getting through a week of trips to Reading and back every morning does take up the half a day and I could not do it without my network of drivers. I salute you all, for you are truly brilliant, and thanks to my ultra organised best friend, I have spreadsheets, clarity and stimulating conversation every day. Thank you.
I thought this week I would give you some insight to the process ... and if you read my last blog, you might see the connections with time. So here is a summary of Week 3 since treatment started.
1. Seizures: none
2. Tummy problems: none
3. Headaches: none
4. Steroids: still speeding. My entire silhouette is two inches larger; truly, I am becoming the Pilsbury Dough Girl. I have learned the art of highlight and shading from the nice lady at the Dior counter in Camp Hopson in Newbury in an attempt to reduce the size of my cheeks.
5. Wine consumption: low, no more than two glasses at a time
6. Chocolate consumption: high. I have converted to the dark side of Lindor balls, they're very good.
7. Motor function on right side: very good
8. Fog in brain: think it's clear... difficult to tell I am now 43!
9. General feeling of wellbeing: excellent
10. Online shopping: put it this way....one store sent me a box of chocolates and discount vouchers for being such a good customer. Out of control.
Every morning, my schedule is the same:
· 0700 - Get up with darling daughter to make sure I eat and drink plenty before 0800. Hand daughter over to supernanny.
· 0800 - Take steroids, anti-seizure and tummy protecting medicines
· 0810 - Go nil by mouth
· 0830 - Call from mother in Spain
· 0845 - Shower and dress
 |
| me strapped down by "shell" |
· 0940 - Take anti-constipation medicine
· 1000 - Get collected by superstar
· 1010 - Take chemo medicine en-route...it must be taken 1 hour before the radiotherapy session
· 1110 - Sit and wait for what is generally a late appointment. Get strapped down onto a bench by a full plastic face mask that is so tight I cannot move a muscle. Get my head zapped for, ooh, 2 minutes.
· 1200 - Allowed to eat and drink again
· 1230 - Home
I prefer my hospitals to be shiny and new, but sadly the Berkshire Cancer Centre is in the old original Reading hospital and I find it a depressing place to be; full of old wood, lilac paint and fish tanks. I must say though that the team are fantastic and they clearly enjoy their work and environment, so the rest is just my opinion.
Because I have an opinion, I also have my own rituals for each trip. I have been complimented many times by the radiographers on my co-ordinating necklace/clothes and make-up which are a must for me. I will not walk into that waiting room like a victim; I remain Cornish (for now) the professional, not a condition. But, this week's quote is a peach:
"I love the way you swagger down this corridor, Sarah, you're so full of life"
Moi? Swagger? As if.......
Monday, bang on schedule, my hair started to fall out, and true to form has done it quite dramatically. It spontaneously lifted itself at the root and keeled over whispering "my life, it's such torture". Honestly, I heard it happen whilst waiting for my radiotherapy; put my hand to my head and got a fistful. None of that gentle departure of hairs on the pillow for me. My scalp is effectively sunburned by the radiotherapy and is now sore. I now officially have less hair than Nearly Husband, and it's very patchy, so I think I will just "rock the bald look" and take it all off when my skin is less sensitive.
As a result, I have been playing around with headscarves, and I am absolutely rubbish at them, I'm much more of a big red hat girl. Although, I really appreciated number 2 daughter Rebecca's response, which was to advise me to become a dangly earring girl...I like that idea. I am also going to try my hand at wigs...have to try everything!
The only other side effect I seem to be suffering you may be able to help me with....my hands, nails and cuticles are drying up horribly in the x-rays so if you have any recommendations for intensive oils and unguents, let me have them. And where do you get those night-time cotton gloves?
I am off to celebrate my birthday for the third time this weekend, with my gaggle of best girlfriends (minus one). Given that Clare lives on an island in the Caribbean we will miss her, but look out Newbury because Clodagh, Elaine, Emma, Sacha, Sarah and I are all coming to town. And I can't wait!
Have a great weekend folks!
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