Thursday, 20 November 2014

Tips for Getting Through Chemotherapy

My bowel cancer surgery was conducted as an emergency, so I didn't have time to worry about it. I only really began to understand what had happened about three or four days after it was a fact.

Chemotherapy on the other hand, gives you plenty of time to worry! Better than worrying is preparation, so I've tried to approach my chemo in the best way for me. I've tried to condense this advice into 12 simple hints and tips which I've listed below.

I've often thought one of the most arrogant things you can do is to give people advice. Especially advice on life changing events like cancer and chemo. But then I looked around for advice on chemo, and didn't find enough of the kind I wanted. I wanted to hear from people who had gone through it and who knew some of the pitfalls.

There are some great blogs, tweeters and facebook groups out there if you're prepared to look for them, I think in these days when people are talking about 'empowering patients' we need to do more to connect together to give the patient's perspectives and experiences as loudly as those of the professionals. A key thing is that as someone facing a disease like cancer, you actually need to think about your whole life, and what your real key priorities are, as well as learning how to manage your life under your new circumstances, and this can be about a lot more than just the pure medical information you can get, which is important, but is really just part of the story. One useful website that really helps with this is "Think About Your Life" which helps you do exactly that.

One useful tool that will really help on that site is the 'One Page Profile', which you can use to tell people around you, whether they are health professionals, friends or family what is important to you and how to support you well. I'm spending a lot of time with District Nurses, Stoma Nurses and at appointments that eat up your week - a one page profile can be something that saves time during these meetings and lets these people know more about who you are and what your priorities are.
This bolus syringe and vacuum makes me look like one of the Ood!

Anyway at the risk of being arrogant, here's a list of my own tips that I'm following to help me get through my chemo. Not all will apply to you. You might like to tell me a few of your own.

1. Get in touch with other people going through the same thing. Read their experiences and learn from them. Don't expect that your experiences will be identical. There's a huge range of reactions to chemo. Some people have a really hard time, other people run marathons in between sessions and raise thousands of pounds for charity. Everyone is different. Don't get too scared by the worst horror stories, and don't feel that you have to be running marathons too. Work out a way of getting through that works for you in your life and situation. Peer support groups work for some people, because we gain strength and power from each other when we share our experiences in a positive way.

2. It's OK to feel like shit. I watched a video where one of the people said "It's all about your attitude, if you have a good attitude nothing can stop you". This is only partly true. Chemo will damage some of your healthy cells as well as some of your cancer cells. You will feel various kinds of discomfort. "Attitude" cannot prevent this, though it can affect how you feel about this. Cancer, chemo and the way the medical system is organised all take away a lot of the control we previously took for granted over our bodies. What we can control is how we react to this.

3. Mindfulness exercises might help: I've been attending mindfulness classes that have really helped me deal with some of the pain and discomfort. Exercises such as focussing on your breath, and returning to your breathing when you notice that your mind has been filling up with thoughts were particularly helpful during the insertion of my PICC line. Here a plastic tube is inserted into a vein and pushed up so that it can deliver the chemo right next to your heart. For someone with my imagination, it would be very easy to panic when thinking about this happening. Calming myself through this focus on breathing really helped me relax. There are lots of places that offer mindfulness these days, so look around for them. If you find that during your class you are invited to visualise yourself as a four-faced 12 armed blue faced sex god, maybe you've found a group that's going a little bit further than everyday mindfulness! (but hey, it might be fun!).

This is a pretty good book on mindfulness that avoids all the esoteric religious stuff, and that has some good exercises and a CD:

4. Gather support from family, friends, work. Giving people an opportunity to help you in big or small ways benefits them as well as you! Some people do this naturally and informally, others might need more formal support through something like a Community Circle.

5. Get regular exercise. Find a way of getting exercise that works for you. I've been walking my step-daughters puppy, when I've been feeling up to it. It definitely does me good.

6. Drink plenty of fluids. Flush those drugs out of your liver as quickly as you can!

7. Look after your mouth. Brush your teeth and use mouthwash.

8. Be careful with cold air and cold drinks. I bought a bandana from a camping shop to put over my mouth when out in the cold.

9. Look after the skin on your hands and feet. The unit where I get my chemo gives out free handcream, so I start using this a couple of days before my chemo session and continue all the time the pump is in.

10. Keep an eye on your temperature. The big risk in chemo is 'Neutropenic Sepsis', which is where your immune system, weakened by the chemo becomes overwhelmed by bacteria that at other times would have been no threat to you. Get a thermometer. You'll be told to eat the same diet as a pregnant woman, avoiding soft cheese, pate and suchlike and to cook all your food really well. Wash your hands, stay away from people with colds and flu, No reason to take daft risks! If you do notice your temperature rising, don't hang around, anything over 37.5 celcius is an emergency. You should be given a number to call and a card to put in your wallet at the very least.

11. Give yourself treats. I've bought in cakes, chocolate drinks, sweets (especially jelly babies which thicken up the output into my stoma). I've had trips with my sons to the cinema. Some cancer charities offer complementary therapies like reiki, massage and art therapy, Find out what's available to you locally, and make the most of it. If anyone is caring for you, see if the same services are available to them. They deserve treats and support too!

12. Ask your doctors and nurses questions. Try to get as much control back as you can! One thing they don't tell you is that it's the awkward patients who argue and question their treatment that tend to have the best survival rates and outcomes, especially compared to people who meekly put up with whatever treatment the health system dishes out.

Please feel free to add your own hints and tips below! Let me know what worked best for you.

Thursday, 13 November 2014

Luck and Cancer

You are walking down the street. A piano crashes to the ground beside you. It turns out, that it was being hoisted into the upper floor of a nearby building in the unlikely way that happens in films and dreams. You are completely unscathed. You walk away shaken by what might have happened.
One by one, the people you meet tell you "You were lucky!".

I've always felt in similar situations, that you might have been luckier NOT to have been nearly hit at all, and that simply not being in the square metre of space that the piano suddenly came to also occupy might not necessarily be a sign of great fortune or that someone is smiling on you. Whatever the logic though, there's something about the way we think that means whenever something really bad NEARLY happens to us (but not quite), we always feel incredibly lucky, however nice it might have been for the bad thing not to have even thought of happening at all.

Being a cancer survivor is making me think again about my luck though. Obviously nobody would choose to have bits of their bowel removed, to wear an ostomy bag, to pump chemotherapy chemicals into their bodies, but I've met so many people in the last few months whose lives would have improved so much just from the chance to do any of those things, let alone all of them.

And here it starts to sink in how lucky I am.

I got treatment promptly because I saw a locum who wanted to do everything right. This meant I got the problem sorted before it got too advanced. Compared with many people facing cancer, I'm young and physically strong, enabling me to be strong enough to cope with surgery and with therapies that put considerable strain on the body. A 70 year old guy in the same ward as me had to do a test where he rode a bike before he could get surgery. He told me he couldn't even turn the pedals, so he wouldn't get the surgery. Much better to get cancer when you're young.

I have the incredible luck to live in a country where the people fought for a National Health Service. So I've watched highly paid professionals lining up medications, the cost of which I wouldn't even dare to ask. In other countries the cost of a cancer treatment would break a family, over and over again. Here nobody checks my insurance records, the care is provided. Free. Unconditionally.

On top of this, we have a society where there is statutory sick pay. My family will be able to live through this time. We take it for granted, but for the vast majority of people living on the planet, there is no such safety net. Life is far more precarious.

And I'm just so lucky in the sense of the circle of love and support that's grown around me. Family, friends and work collegues who have gone out of their way for me. Cards, phone calls, meals, people have travelled hundreds of miles to see me, lifts and other support has been offered, not to mention new tendrils of community  such as the lively facebook pages for baggies and ostomites.

 Most incredible of all has been Lorraine whose held it all together under immense pressure. It's been really great to know that I know so many loving and generous people!

If this seems like a session where I am "counting my blessings", I guess that it is. I'm counting them and finding that they're multiplying faster than I can count them. While the language that reflects such blessedness tends to be religious language, it's clear to me each of my blessings has begun in a human heart - they're products of a caring community, ethical workplace, loving family, and they are abundant.

I've a way to go yet. 11 more chemo sessions. I'm not looking forward to them. Don't let anybody tell you that there is anything to learn from pain, apart from how crap pain is. If there is a gift that cancer brings is the opportunity it gives for people to reach beyond everyday help and share a little bit more, those moments when human beings comfort and help each other in difficult times. My blessing is to have benefitted so much from so many of these moments since my cancer was discovered.

So should we call it luck? Abundance? Human Solidarity? Love? Something is working for me, and I'm so thankful for it.

"When you realise how perfect everything is, you will tilt your head back and laugh at the sky..."