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.