One Year Since Diagnosis

On 19th September it will be a year to the day from when I was first diagnosed with a cancer.
It's also about 4 months since the scan that showed that my cancer has metastasised, where I moved up to Level 4 and those words 'incurable' and 'terminal' began to apply to me.

As you can imagine it's been a year of immense learning.
I've learned a lot about cancer.
I've learned a lot about myself.
I've learned a lot about the warmth of people, and what friendship and family really means.

I remember the confusion I felt on the first night I spent on the Surgical ward. Apart from the aches that had taken me to the GP's that evening, I felt pretty well. Everyone else on the ward looked to be in terrible distress. All round me were people vomiting green bile, people clearly in agony. I felt like an intruder.

It's a feeling I still have a lot of the time, because apart from pain, my operation scars and my stoma, there's nothing tangible that tells me I have cancer.

In the last few weeks a lot of things have been falling into place. I've moved off codeine, which I really disliked because it made me twitchy and anxious, onto morphine, which is controlling my pain much better. I have a MacMillan nurse who is giving me good advice around pain. I'll be discussing end of life planning with her next week. I'm working things out so that I can keep on at work.

I have had a scan that shows that while the nodules are still growing, the rate of growth has been considerably slowed down by the chemo. I would have hoped for shrinkage, but I'm told very slow growth is almost as good.

I've also read Serwan-Schreiber's book 'Anti-Cancer'. This has inspired me to take diet and exercise much more seriously. According to the stats I've read, 12 out of every 100 men with bowel cancer that has metastasised are still alive five years after diagnosis. I have every intention of being one of those 12, but I also need to plan in case I'm one of the 88. Eating well, including things like turmeric, ginger, garlic, fresh fruit, vegetables and green tea in my diet has already improved how well I feel, and I'm certainly enjoying the taste of my food more than when I was following the advice of the stoma nurses to 'eat plenty of stodge'.

Last Saturday I attended Preston's 'Gentle Approach to Cancer' group, and enjoyed my first ever yoga session, which was also the first formal set of exercises I've participated in since my operation. Moving in this way, even once has boosted my physical confidence and made me feel better in my own body. It was great to meet people who are living with cancer, to hear their stories and basically be with people I don't need to explain everything to. We sung the song I've posted in the photo together. In general I find great support from groups of people with experience of cancer in their own lives, like this group, and like the online forums that exist. Nothing beats lived experience.

I also want to plug my mate Ben Ashworth. He has bowel cancer too, lives round the corner from me and has run 17 marathons in 17 months. He is raising enormous sums for charities. He's a personal hero of mine. He's been living the bowel cancer adventure for about a year longer than me, and is just a wonderful individual.

My message to people newly prescribed with a cancer, or who have just discovered that their cancer has metastasised is "don't panic". Keep going. Find strength in other people, particularly people who are living with cancer themselves. Find little ways to win more control. Take one day at a time, days turn into weeks, weeks turn into years.

The survival stats for men with a Level 4 metastatic bowel cancer don't look brilliant. Something like 7 in every 100 live for more than 5 years. One question to ask is "why shouldn't I be one of those 7?" another is "What do I need to do so that I have a good life for as long as I can, what do I need to do to make sure my family are OK in case I am one of the 93?"

Mindfulness and Chemotherapy

I've only really been practising mindfulness for a very short time. I'm just a beginner, but it is very useful to me.

It began last September when I picked up a leaflet about the Vajravarahi Centre in Preston, seeing that they did a free half hour relaxation session on Friday afternoons.

I was worried about how tired I was feeling all the time, and about my various aches and pains, so I felt it might help.

I ventured in, greeted by an enormous statue of the Buddha facing the doorway. I was directed to the meditation room, where we removed our shoes before entering. This is a beautiful room, decorated with some amazing statues. I was pleased to see everyone was sitting in ordinary chairs, rather than having to sit cross legged on the floor!

As I attended these sessions, I learned a few very simple techniques: relaxing the body, focussing on the breath, visualising problems and intrusive thoughts as black smoke being exhaled from the body, visualising a ball of nourishing white light that can be breathed into the body, and shifting the seat of consciousness from the head back into the heart.

The session was followed by tea, the chance to eat a vegetarian meal and have a chat.

In between the first time I attended and the second time, I was diagnosed with bowel cancer, admitted to hospital, had an operation to remove the tumour and create an ileostomy. After I was discharged from hospital, having this session to attend became a motivation to get out of the house, an opportunity to meet people and I had an inkling that what I was learning would be useful to me.

Sure enough it was.

Although the operation had removed all the tumour and there was no sign of any metastasis, I was put on 12 cycles of precautionary chemotherapy. In preparation for this, I had to have a 'PICC line' inserted, this is a thin plastic tube that is pushed up a vein in the arm, till it almost reaches the heart, so it can deliver the chemotherapy drugs directly into the body. Once it's inserted it lasts for the full course of the treatment.

Thinking about a plastic tube being pushed up your vein toward your heart is a fairly alarming and intrusive thought, and the process of insertion causes some discomfort. I used the technique of focussing on my breathing as a way of keeping control, and found that it worked well. I was able to get myself into a zone of relaxation and calmness as the procedure was carried out.

The first time I had chemo, the PICC line didn't work; it had a tiny hole that the chemo fluids leaked out of, so the line was pulled back out, and I was back in to have it reinserted the next day. The nurses remembered how I'd coped last time and encouraged me to use the same techniques again. I found these techniques worked even better the second time round. Since then I've had no trouble with my line.

Every fortnight I spend a day at the Rosemere Unit in Preston getting chemo. I've used the 3 hours I spend attached to a chemo drip as a chance to practice mindfulness.

On my 8th session, this Tuesday, something different happened. As the oxaliplatin was introduced, I sneezed a couple of times, then felt my scalp itching. Next minute it felt as if my scalp was on fire, the palms of my hands turned bright red, and red blotches and an itchy rash came up all over my arms and belly. My chest tightened painfully. It felt as if someone was sitting on me!

I was having an anaphylactic reaction to the medication. It's where the body's immune system runs out of control. I knew this can be potentially life threatening. I also knew I was in the safest place to be having such a reaction. Literally within seconds of the symptoms showing, the nurses and a medic seemed to appear from nowhere, they had surrounded me, stopped the oxaliplatin, were giving me hydrocortisone, paracetamol and piriton, checking my blood pressure and breathing and hooked me up to a heart monitor.

As this was happening I remembered the technique of shifting the seat of consciousness back toward the heart. This was a safe place for me to be, where I could observe what was happening to my body and around me, calmly, without panicking. I think a combination of using this technique and the calm competence of the team around me, particularly the way the young oncologist took charge meant that I never felt in any real danger. The drugs worked quickly, the pain subsided and the blotches began disappearing rapidly. Within 20 to 30 minutes I was back to normal. The team remarked on how calm I had been throughout.

As well as helping me through those painful and potentially alarming moments, I think practising mindfulness has had other effects useful in my everyday life, particularly in how I interact with my family and other people.

I don't do mindfulness as regularly as I should. I only go to the half hour sessions, rather than the longer ones in the evenings and at weekends, I don't think I do it particularly well. I'm easily distracted, my mind wanders everywhere, I fidget. I feel like I'm at the stage of someone learning to sail a model boat on a pond, rather than the captain of an ocean going liner. Nevertheless, learning a few simple mindfulness and relaxation techniques is helping me cope with a cancer, an operation, an ileostomy and the side effects of chemotherapy, as well as many other aspects of my life.

You can't knock it if it works!

Tips for Getting Through Chemotherapy

Chemo-rocker

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: http://www.amazon.co.uk/Mindfulness-practical-guide-finding-frantic/dp/074995308X/ref=sr_1_1/275-9958178-5278725?ie=UTF8&qid=1416486874&sr=8-1&keywords=mindfulness+a+practical+guide

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.