Wednesday, 23 April 2008

On Reflection...

Are you sitting comfortably? It's a bit of a long one? Ready? Then I'll begin...

I didn't know it at the time, but in November last year, I joined a club. I wouldn't mind but it's not even that exclusive given that 1 in 3 of us will end up being made members - like it or not.

Membership is free (if you ignore the cost of prescriptions), and non-negotiable. There are a few benefits (though not applicable to everyone), such as free parking, road tax exemption, and free holidays (courtesy of charitable organisations such as the Willow Foundation ). Oh yes! And you are a member for life, too. Even if you survive the thing that afforded you membership, you can never leave the club, but you do move on to new level after 5 years. This is much more exclusive, and gives you the title survivor.

There are other, hidden benefits to membership of this club however. You get a rare opportunity to find out who really loves you, who thinks you're all right, and who couldn't give a shit. I've been so fortunate in this respect, and have had so much support that I have been able to get through this awful time. So to all of you who have cooked me dinner (some have even brought a la carte 'meals on wheels', complete with wine and good company!), have driven me into town and pretended not to notice when I've farted loudly in shops, or nearly thrown up into my shopping trolley, to those of you who send me regular texts (whassup chemo kid?!), or emailed, or phoned, who have taken me to and from hospitals, doctors, pharmacies, to those of you who have commented on my blog even though I hardly ever seem to comment on theirs these days, to those who have listened to my fears, and dried my tears when I've been at my lowest ebb, I thank you. You are all truly wonderful! I shall have an astounding number of thank you cards to write when I attain the coveted survivor level of club membership.

Although, I am a survivor, and have been since day one of my diagnosis! I have been tested, no! Am being tested, to the limit. Sometimes I find myself being jealous of breast cancer people! How crazy is that?! But when you have one of the rarer cancers, like my little pancoast jobbie, with all the pain it's causing by nestling into the nerve bed of my brachial plexus, then you do think, "lucky bastards!" Just cut it out, or off, lose the hair, take the chemo and then the pills, and LIVE! But of course, it isn't that simple is it? And loads of woman die of breast cancer too, and the associated complications and spreads. Losing a breast is both painful, and emotionally scarring, to which both my birth mother and birth grandmother, and auntie P, will all testify to. It doesn't matter what cancer you get - they're all pretty shite. Physically, emotionally, mentally and even spiritually, every day is a test of some description.

But sometimes, this turns out to be a good thing. An inspiring thing. A positive thing.

No really!

We learn more about who we are, how much we can or cannot take. When my oncologist rang me yesterday to suggest I have a further two cycles of chemotherapy in conjunction with radiotherapy (starting May 6th), I cried. More accurately, I broke down and sobbed. But I came round. I said to myself, "Okay, Lisa. If this is what he thinks I should do, then I will do it. I will get through it somehow." I put the phone down, and I went to my appointment with the wonderful woman at the hospice, and cried some more while she examined me every which way. I went through half a box of hankies while she prodded at my horrendously swollen feet, legs, and belly, and tried not to swear at her as she took yet more bloods (brilliantly, and efficiently, and with her wonderful sense of humour). She changed my meds again (which seems to be working and the swelling has decreased markedly), and listened to me with a great empathy, I thought. She said, "Of course you feel crap. You are a young and otherwise healthy woman, with a life, and there are no guarantees in this game. It is crap. There's no other word for it."

So this morning I went for my riding lesson and my moral was boosted as I managed the 'next level' of horse, riding bit-less, and on a more finely tuned animal. I forgot about the chemo thing, until this afternoon when I had to see the oncologist again, and discuss treatment.

But I did not cry. You see, I am stronger than I thought I was.

"Some of my colleagues thought that it might be an option to try chemo with the radio," he said. (Words in bold are the ones I picked up on.) "We are suggesting 4 days of Cisplatin (I hear 5 day stay in hospital) at the beginning of radiotherapy, and again at the end." (I hear 10 days in hospital, and try to reason that the health insurance will pay £100 for each night in hospital, but conclude that £1,000 is not worth it.)

We discussed much more. My oncologist pointed out that chemo will make the effects of radio (breathlessness, scarring to the lung, pain on swallowing, tiredness etc.), even worse. He points out that sometimes the standard approach, i.e. chemo, then radio, is better for some patients. My lung function was above normal, better than. He said it's very rare to see my level of lung function in a lung cancer patient, and that all the riding and hard work is paying off.

And then I learned that I cannot go through another two cycles of chemotherapy, and that I don't want to take the risks involved. I'm not strong enough for that, and yet at the same time, on the positive side, I am still aware enough, still able to take the information I have and sift through it to make an informed, rational, considered decision. All is not lost.

And I'm not having any more bloody chemo!

And I must tell you - chemotherapy was awful for me. I have seen maybe one person sail through it, but most of us suffered terribly. I didn't lose my hair, or need blood transfusions, and my veins didn't collapse. I never had a fever, or infection either, so in many respects I sailed through compared to my new found 'club' friends! But I lost my dignity as they pricked me and poked me, invaded my body with needles and fluids, hands and eyes. As I farted helplessly and pee-ed in a measuring jug. As I vomited and retched for what felt like an eternity, but was only a matter of days at a time. I watched others lose their dignity as they writhed and/or screamed in pain, or lost control of their bowels and shat all over themselves and the ward - trying to keep composed through the stench, to offer support, to say, "It's okay," when really we all know it just so isn't.

I lost the capacity to wash my own hair, having my daughter bathe me. I learned patience - something I very much lacked. And yet through this long assault on my poor body it has done me proud. The piles have cleared up. My body has taken the pain killing drugs with minimal fuss (although it didn't like the higher doses of morphine and came out in an angry rash and swelling!). It allows me to ride horses and keep on typing. What can I say? I have learned to love it, and hope to god it keeps going for quite a bit longer - I mean, I'm still on my first bloody novel, eh!

I've also learned that you have to be strong for everyone else too. I see the pain in the eyes of those closest to me, their helplessness, and yet they don't seem to realise that they are doing more than enough just by being there.

And on this journey, through this club membership, I have met the most wonderful people, have been places and done things I wouldn't have done otherwise. I've learned things I would never have known before. I have gotten a grip of my anger (yes Rob, I was soooo angry, really I was! Angry at trying to be a mother, wife, lover, daughter, student, lecturer, friend, writer, etc. etc. and feeling as though I was failing miserably at all of them). I have learned to manage my mind and negative thought processes much more effectively and am still working on this in particular.

I have seen how fragile and precious this thing life is, and it pains me to see people in pain, stressed, struggling about things I now know to be wholly insignificant; how we give ourselves roles and labels: I was all those things I listed above and now I am what? Cancer Patient?! I throw away the labels - they do not define me. I refuse to let them.

I love and, am loved. I am alive. I am healthy. I try my best. These are the only things that should matter. I don't mean to lecture, but when you have the metaphorical carpet of life ripped out from under your feet, you tend to see the world with a new perspective.

One that shifts and changes, and scares the pants off you!

And yet, would I change a thing?

Probably not!


Calistro said...
This comment has been removed by the author.
Calistro said...

Oh God Lisa. I read your post with my heart in my mouth. A friend of mine had Non Hodgkins Lymphoma and wrote and acted in a one woman play inspired by her experience. It was a great play, a very moving, very informative play but it had NOTHING on the power of your words in this post. And I'm so sorry you have to go through this.

I have the most tremendous amount of respect for you. You've shown, and continue to show such resilience, such strength of character, such postivitity, such fight. I don't think I could have been nearly as strong (in fact I know I wouldn't) as you in this situation. You're an inspirational and exceptional woman Lisa, really you are.

(Last post deleted by me due to typos)

maresy said...

what a wonderful post, you go girl! Whatever you decide with Chemo and Radiation, is your call, I don't think there is a "right" choice, but a the choice you can live with. You are making all of us Healthy ones look bad! I need to start swimming, and riding a horse, and the list could go on, everything else pales in comparison to your efforts and accomplishments, keep going, you are doing wonderfully. love you Marion

Carol and Chris said...

Very very moving post Lisa. Like the other two really are an inspiration!!

C x

Zinnia Cyclamen said...

This is an amazing post and was well worth waiting for. The insight you give into the process of being a cancer patient is fascinating, particularly as you write about it so unflinchingly. I think there might be a really good non-fiction book or two in you, you know, as well as all those novels. And your decision about the chemo sounds like a really good one. (((((hugs)))))

Denise said...

Glad you don't have to go through more chemo, and hope the radio side-effects are minimal. My sister found driving to the hospital every day more taxing than the treatment! Great pictures from centre parcs, holidays do you more good than you realise.

I've also learnt this morning that I shouldn't read blogs at work (v. naughty!) because tears rolling down your cheeks get you some odd looks in an office full of men. If your novel is anything like as strong as your blog you'll be snapped up.

Captain Black said...

Lisa, I'm amazed that you were able to write this article. It made me realise a great many things, some of which I've suspected and are now confirmed. Some things I didn't know. To pick on a few...

You are definitely a writer. After reading that post, I have no doubt about your ability to write. That piece must have come from the heart but it remains clear and well presented.

Your resilience and fighting spirit really comes through. I wish I had half of your strength in this respect.

The small things in life and the even smaller issues we call problems are, as you very rightly say, insignificant - as are the people who don't care for anyone but themselves. It's a real pity that it takes something as horrible as illness to point this out to us.

You indicated the attitude of the medical fraternity. This is one thing I hate about it, despite my great respect for all science. That cold, uncaring detachment that seems to accompany medical practise. I understand why they do it, but that doesn't mean we have to like it.

I'm so impressed that you've got back on your horse. Literally!

clairesgarden said...

you've said some things there I have to think about,
will do once the tears and snotters dry up a bit.
your amazing!!

Brenda Mayhew & Co. said...

Do what you feel is best for your body and situation!

So glad we're helping and not hindering. Sending all our good thoughts and love



Jon M said...

Blimey!That was such a brilliant post. Consider my hat well and truly taken off, doffed even! :)Mayhews are a tough breed, I'm learning this watching my Mum! From an onlooker's point of view it certainly puts things into perspective.

Lane said...

Everyone has already said it - what a brilliant and articulate post.
Remember too that you've given us so much by your unstinting generosity in sharing your experience.


Annieye said...

Lisa - you are a marvellous woman. I don't think I have ever read anything so honest and moving in all my life.

I'm glad I'm alone. I could easily have been reading your post at work, or on my laptop in the lounge.

The rest of the family and, I suspect, most of my friends and colleagues don't truly understand the power of the written word. How its strength can either strike like a viper at your soul, in a second's passing, or thread and weave its way around your synapses, changing your perspective on life, roughly shoving to one side trivial things like being overweight, or getting annoyed at your husband because he hasn't finished decorating the lounge.

Get those fingers working, Lisa. And get it all out there. You have a gift.

Keep strong and healthy, too. You can beat this and you are over half-way there.

Emma said...

Lisa, I am probably just repeating everything everyone has already said but you are truely awesome and such an inspiration, such a moving post. Keep hold of that spirit and driving forwards. Emma x

John said...

Powerful. Your descriptions of your emotional and physical experiences sing an honest, sad ballad. It's genuine and I admire your courage; not for facing cancer - you weren't given a choice there - but for overcoming the conditioned response of the stiff upper lip. For showing your gratitude, weakness and fear.
Thank you.

hesitant scribe said...

I am speechless at all your lovely responses (including texts, emails and phone calls). Thank you so much. I'm just so pleased that I'm doing something good.

wordtryst said...

Oh. My. God. I'm so glad I came over here. Thank you for this post, for making me read when I want to cover my eyes and not know.

You are amazing. Riding horses? !!!

I definitely need to work on adjusting my perspective. This post has reminded me of what is important.