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!
Saturday 16 April 2011
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.
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