Reality..

It is all very well talking about hair loss, swollen ankles and bruised nails, but there is nothing like a picture..

So, in this post, I break my rules and post them for you.

Can't

I hate the word 'can't ' with a passion. In my life, as soon as someone has said the word to me, I automatically feel the need to do precisely the opposite of whatever it is they are telling me I 'can't ' do. Hence the time I swam across a pond in West London after midnight one New Year's Eve, or the time I ran into the road to direct the traffic when a police car was trying to get through.. or the time I danced on the bar in a Hong Kong bar. Adults, husbands, children, teachers, parents have all tried to teach me the meaning of the word, and I, obdurate as a donkey, have refused to listen.

Who says I 'can't' join a gym on the first day of chemo? I did. Who says I can't eat ice cream in the middle of winter? I do. Who says I can't go out drinking as a single female until 6am? I could and did.

In this case, though, cancer has taught me that there really is a stage at which I can't. Several weeks ago I booked flights and a hotel to see a dear friend in Northern Ireland who is getting married this week. I was really looking forward to it, to the change of scene, to the freedom of escaping London, and to seeing two people make each other happy, which, let's face it, is really rare in a marriage...*smile*. I have had to admit to them, though, and ultimately, of course, to myself that this time I really can't do it. I cannot walk more than one hundred yards, I now need a stick to get around and walk incredibly slowly. To travel the distance, then participate in a wedding for the day and return the following day is just impossible for this body.

Never have I so understood the phrase, the spirit is willing but the flesh is weak. In my mind I am the same unconstrained, unconventional, unbound woman I always was, but my prison is currently my body, my swollen ankles, my tearing eyes, and my tired muscles...

Now, I can't but I will, I will....

Minerva

Surfacing

Have you ever swum below the water? Moved from a world of sunshine, shouts, and noise to a world of green or blue obfuscation, where the only sensation is that of water, above, below and around you? Where the trivialities of normal life fall away, and you are intensely, suddenly conscious of being alone, of being in your own space and body?

This week has been the hardest so far. I have been decimated by my tiredness and my lack of mobility. I wept three times in with the doctor on Wednesday as he told me he could do nothing for my swollen legs and ankles. I am breathless walking up a flight of stairs, and to get to my bedroom which is up three flights, I need to stop for a minute or two every time. The steroids, as usual, have completely mucked up my sleep patterns which means that for the last five nights I have been getting to bed at 6am and waking up at around 10. And my body, my mind and my emotions have given way under the stress.

I have been a zombie, a woman incapable of any of the niceties of modern life, unable to pick up the phone, to talk coherently or express any sort of emotion other than a few recalcitrant grunts as all the energy is being saved just for my body to tick over... It is so very, very hard.

And today? Today I went to sleep at 3am and woke up at 7pm. Yes, 7pm and it is just like a swimmer bursting through the surface into the world again. I am still hugely dehydrated, slightly dizzy and headachey but I can function, I am a member of the world again, and for that, for that, I am intensely grateful.

Minerva

Waiting

Treatment is all about waiting. Today was a typical day, a day of time spent waiting for others, waiting for treatment, for scans, for news.

I don't know if this is representative of most countries, but I do know that this is my experience at a Centre of Excellence for Breast Cancer under the British National Health System.

8.30am Arrive at Clinic and take ticket for blood test.
9.30am Called in to have bloods taken.
10.30 am See Doctor but liver function tests not yet through so unable to order chemo.
11.15 am - tests through and chemo prescription faxed to pharmacy.
11.30 am Sent to ultrasound to check for clots in swollen leg.
12 pm - Scan happens.
12.15am - Go to chemo suite.
2 pm - Called in for chemotherapy.
2.30 pm - chemotherapy finally given.
3.45 pm - Chemo finished.
3.50pm - Radiotherapy appointment for radio planning.
4.30 Called in to radiotherapy.
6.30 pm - finally leave hospital.

A very long tiring day.

And, as always, some good news.

Radiation looks as though it might go ahead. It seems that the rebellious lymph node was not radiated last time so that brings hope.
There were no clots in my legs.
That node is hard to feel now..even for me.

But still, a long tiring day for a girl who can't walk further than a hundred yards without resting and catching her breath...

Minerva

Swollen

I have an extra side effect and it is currently crippling me.. My legs, my arms, my wrists, ankles and feet are hugely swollen.

I can't walk more than 100 yards or up two flights of stairs.. I need to put my feet up every two hours or I can't get my shoes on.. My boots won't do up, my socks dig into my ankles and my trousers dig into my waist and my calves are huge and hard.

I am really suffering...

Chemo again tomorrow followed by a radiotherapy planning session. Number 5 and then number 6.

This is hard - really hard. I am down, I am finally appreciating how hard this chemo stuff can be. Looking after my children is really difficult and all I want to do is hide under a duvet for the next 6 weeks.

According to the research that I have done on this, the edema or swelling gradually reduces after the chemo. WHEN?? I want to go back to work, I want to look after my kids.. I cannot afford the luxury of waiting months for it to reduce...

I am so angry. For the first time, I can really appreciate people who don't want to go on with chemo. Just two more to go, six weeks of struggle - please, someone give me strength,

Minerva

Side Effects

In all the time that I have been writing this blog, I have never really become physical. That is to say that I have always considered my focus to be the emotional and intellectual struggle of dealing with cancer, its treatment and the repercussions of facing mortality.

Today, though, I am breaking that rule. Today, I want to talk about the physical side effects and the reason I want to do that is because I, a forty year old woman, am finding them really really debilitating.

So where do I start? With the most obvious of course. I have no hair, or rather, I have tufts of hair which makes it look even worse. At the front, I do have a little tonsure and behind it, I am bald with minor sprigs. Last time, I was so blase about having no hair. I teased the kids I teach about it, told them not to call me 'Baldy', and if I did look different, not to pull my wig off. This time, I don't have the courage. I wear a scarf almost all the time and rarely expose my head outside the house. This time, it is real, it is personal and I feel the embarrassement.

I have put on weight. This is not just because of the steroids which I take the week that I receive chemotherapy to reduce the side effects but also because of the inertia associated with the fatigue. Additionally, after chemotherapy the only foods I can taste are either sugary or salty neither of which are particularly healthy.

And the tiredness is overwhelming. I can't walk to the end of the street and back without resting. I have three flights up to my bedroom and am completely out of breath after each one. Bending down to the floor and getting up again takes real effort and the sheer energy required to run my house is just exhausting. I have never felt as debilitated as this before. I walk really slowly whereas I used to stride out. Suddenly, in a matter of a couple of weeks I have become tired and worn out.

Due to the veins thinning due to chemo, I have bruises on my legs, and arms. I have a nosebleed everytime I blow my nose and blood has accumulated under my nails like bruises. My fingernails hurt every time pressure touches them and my children have to open cans for me, tap bottles, and even writing, with a pen, hurts.

My skin has turned incredibly dry too, to the extent that my hands are peeling. I cannot turn pages in a book or magazine without wetting my fingers as I cannot get any grasp. My lips are peeling and my skin from my face has turned alternatively dark and blotchy as well as dry and flaky.

Finally, my eyes weep constantly. Looking at the screen is sometimes difficult because of the moisture in my eyes and I look as though I am weeping.

Not a pretty state of affairs at all but not, and I repeat, not a post that I do seeking pity. Not at all. Because in a year, all this will be forgotten, all this will be a mere burr of the past, but for that nasty collection of cells in my body, it won't even be a memory.

If this is what it is doing to me, Cancer, you don't stand a chance.


Minerva

Perception

It's a beautiful day in London. The air is still crisp and the gardens behind me rustle with a breeze through the trees. Sunshine claws its rays through shut windows and edges round the hinges of doors. A day that makes your fingers itch with the desire to scrub all those suddenly apparent corners of dust that have remained undisturbed through the winter. All those dustballs which seemed so warming in the rainy cold of December suddenly seem surplus to requirements, disgusting and one desires a house that postitively sparkles ready for the marks of life to follow.

So too with my life. I have slowly, elephantinely slowly sometimes, been clearing through the detritus of my past. I am well aware that having always been a writer, there are diaries, half filled notebooks and papers that I don't want my children to read. Episodes that I don't want them to know about in the cold light of day. They may have been entertaining, amusing when I wrote them deep in the darkness of my youth's winter, but now the glare of motherhood is upon them, they are ready to be jettisoned, cast into the ocean of black plastic bags ready for the landfill.

A mother's instinct is always to protect. I remember someone telling me that the most amazing thing about having children is the awareness that if someone gave you the choice whether it was you or your child that faced the bullet, you would put yourself forward every time. It is that instinct that feeds me now, that makes me aware that if/when I go, then the view that my children get of their mother must not impinge on their own reality any more than it has to.

As children, it is amazing what lengths we go to sometimes to retain our own view of reality. I remember saying to a friend of mine that an earthquake was more likely than the divorce of my own parents. Three months later, they broke the news to me. I had somehow managed to ignore the five year affair, the constant philandering and the financial struggle between them. It was only later, much later, when I inadvertantly found letters between the two of them, (and yes, I KNOW I shouldn't have read them..) that I realised the full extent of the film that I hadn't seen.

That is something that I prepare for now as I throw out old journals and letters. The most precious gift I think I can give my children is the belief that their childhood was exactly as they saw it.

Minerva