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?"

Using Life History To Think About the Past and Prepare for the Future

This was originally posted here: http://connect4life.blogspot.co.uk/2015/05/life-history-and-long-term-conditions.html




When I got the bad news that I had a diagnosis of an advanced bowel cancer, even though I had had 6 months following my operation to prepare, it still took me a while to get my head around the idea. I doubt if I've still fully processed it, or properly discussed it with everyone that matters to me, but I'm doing my best to get on with this.

Getting a serious diagnosis is definitely a time that many of us start to think about what really matters to us. Who we are, what our wishes, hopes and fears are.

Person Centred Thinking offers a set of tools and questions that help us with this. Using them to think with the people we love, and the people who know us best helps us have those important conversations.

I recently posted my One Page Profile here which is one example of person centred thinking. I've now shared it with my Oncologist who said she would find it really useful as a way of helping her understand my wishes. She has photocopied it to share with the whole Multi-Disciplinary Team involved in my care. I'll be sharing it on my visits to the Rosemere for chemo, and with the District Nurses who will be looking after my PICC line and taking down my bolus pump and syringe.

Another tool that helps with this kind of thinking is the 'History and Important Memories' Timeline. I found it in the 'Living Well' document developed by Lancashire County Council with Helen Sanderson Associates. They designed the pack as a way to help people and their families being supported in palliative and end of life care. I've begun to fill it in, and I'm including an example of an early draft here. There is still loads of important detail to include!

One of the most difficult things about having an advanced  cancer is the uncertainty. If you ask your oncologist 'How long have I got then?', they have no way of giving you an answer. I'm starting a course of chemotherapy that might cause the secondary cancers to disappear, shrink, stand still or simply not be effective. It's impossible to say until it happens. If it doesn't work then I hope there's something else to try up her sleeve! I'm meeting people who have walked around with a cancer for 10 years, managing it with chemo, others who have seen their cancers become very aggressive, others whose cancers have gone into remission for no apparent reason. I could become any of these people.

Stepping back to think about your past is one way to prepare for an uncertain future, and that's how I'm using this 'history' tool. I'm at an early stage, but I'm gradually adding in more and more important events, places and people from my past.

Filling it in has made me think about some of the formative events and experiences that helped me establish my values as well as the joyful times I've spent with the people that matter to me most.

It has also made me think about the future quite differently. A few months ago I might have expected the end of the arrow to look like "cancer metastasises - pain and suffering - death".
Instead mine shows " back to work - cancer metastasises - camping trip, holiday in Venice - more chemo".

I'm already using this different perspective to work with my managers to put together a plan for how I can continue working and avoid major risks while having chemo. I'll also use it to help me prepare my family for some of the tough times and possibilities ahead. I'm learning to say "I have advanced bowel cancer, I'm managing it with chemo and the help of my family, colleagues, friends and the people at the Rosemere unit".

I'll be working through more of these tools, and sharing them as part of my work with Connect 4 Life. I feel my past experience as a trainer in the world of person centred planning puts me in a position where I can help both service providers and people living with long term health conditions see some of the potential in these tools as a way of regaining some control in life in times that are unpredictable, when it's too easy for others to take over. I'm hoping that by sharing tools like this, I can help services and family carers help many other people facing similar health issues win more control in the direction of their lives and support.

My Bowel Cancer One Page Profile:

This was originally posted on the Connect4Life blog: http://connect4life.blogspot.co.uk/2015/05/one-page-profiles-for-long-term.html: thought I would share it here too!

One page profiles are a simple way that people with long term health conditions can tell our story and express our preferences.
They have a starkly simple format: They have just 3 questions:

• What people like and admire about me.
• What is important to me
• How to support me well.

Max Neill, who works with Connect4Life as a community connector has just written a one page profile to share with his family, friends, workmates and health professionals involved in supporting him with his cancer.

He said "Last September I was diagnosed with bowel cancer and had an emergency operation followed by precautionary chemotherapy. In the last few weeks a scan revealed that despite the chemo, the cancer has metastasised, with new growths on my peritoneum and lymph. Obviously this means that I have a lot further to go on my cancer journey, but as well as being a cancer patient, I'm also a family man, a Connect4Life worker and someone who enjoys a game of Dungeons and Dragons!"

"I decided to write a one page profile for a few reasons. I thought it would be a good way to gather my thoughts together at a stressful time and express my wishes clearly. I'm going to see my oncologist again next week to discuss my options, and I wanted her to know that I want to do what I can to work towards a cure. I'll share it with people like my ostomy nurse and the district nurses who've been supporting me with my chemo, and the staff at the Rosemere Unit."

"I'm hoping that it will be a way to avoid having to answer the same questions over and over again!
I like the one page profile because it is so simple, yet it enables you to say so much. It avoids all the medical jargon, and it helps you have the important conversations you need to have at a time like this, both while you're making it, and while you're sharing it."

"It's too easy in a big busy healthcare system for your identity to be subsumed by your diagnosis. I want to use my one page profile so that who I am comes off the page, and I'm recognised as a person with my own priorities and my own hopes and fears. I think a tool like this would be useful to so many people, why shouldn't every cancer patient be helped to write a One Page Profile?"



You can find out more about One Page Profiles by following the links below:

This is a blog with one hundred examples of One Page Profiles being used in many different ways:
https://onepageprofiles.wordpress.com/

Here's a blog advocating the use of One Page Profiles with Older People living with cancer: http://opaalcopa.org.uk/tag/one-page-profiles/

Here's Amanda's One Page Profile written around her breast cancer: http://thinkaboutyourlifeandhealth.com/2013/06/28/using-one-page-profiles-to-direct-cancer-support-amandas-story/

The Learning Community for Person Centred Practices have shared many examples of One Page Profiles: http://www.learningcommunity.us/onepageprofiles.htm

Here's a blog showing how One Page Profiles can be used in personalising health services:
http://personalisinghealth.com/tag/one-page-profiles/

Think About Your Life offers a whole range of thinking resources to people living with cancer, including a template for a One Page Profile: http://www.thinkaboutyourlife.org/

You can also get in touch with Connect4Life!

Follow us on twitter: @C4LifeLancs

'Like' us on facebook: https://www.facebook.com/Connect4LifeLancs

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!

Sweet Calamine

Here's a tip for anyone who has a stoma, and finds that they get red and itchy skin around the stoma area.                                           

Here's my ileostomy. It's double barrelled,
and reminds me of the 'yin yan' symbol.
 

I had this problem, that was partly solved by using 'stomahesive' paste around the edge of my stoma, so that the fluids in my bag stopped getting directly onto my skin.

I still found however that just the presence of a bag on top of my skin 24 hours a day was causing it to get irritated; both the area it was on top of, and also skin nearby.

I also found that my bag wasn't sticking that well. It would leave gaps that made me feel insecure about whether I'd end up getting a leak.

I found some advice on one of the facebook pages I link to in my post 'Ostomy Advice and Resources' which I thought I would give a go.

What I did was first to shower with my bag off. This is a great feeling. You can get your stoma and the area around it really clean using wipes provided by your ostomy supplier. It's great to get some fresh air to the area around the stoma too. I'm sure it does it good. Obviously the key to showering is to have everything ready to hand, time spent getting out all your potions and powders, wipes and bags beforehand and putting them in their places is time well spent.

When I'm washing in the shower, I don't use strong perfumed soaps or sprays near my stoma. I gain confidence from the thought that this is actually my intestine, that's been turned inside out and brought to the surface. When I think about some of the potent curries I've eaten and which all travelled down this tube, I realise it's made of pretty resilient stuff. Nifty work with wipes ensures that if my stoma starts working, I catch anything that it kicks out!

I dry the stoma and the area around it with more wipes. Then I use calamine lotion. This is the same stuff you use when you have sunburn or chickenpox to soothe and protect your skin. It's cheap, and available in any pharmacy.I use it much more thinly than I would with sunburn or chickenpox. I spread it around the area where my bag is going to stick to.

If I'm not showering and just changing my bag, some calamine on the end of a wipe is a great cleaning fluid too, getting rid of any leftover adhesive. It's slightly astringent and soothes any redness, it creates a barrier over the skin that protects it from further damage, and when it dries it's slightly powdery, creating a great surface for the bag to stick to. I find that the bag sticks much better on skin that's been treated with calamine lotion, and that it doesn't gap. Combined with stomahesive around the edge of my stoma, I find I have a good barrier and a great seal that lasts much longer than other methods I've tried, and really feels more secure and less itchy.

If I'm in a good mood, while I'm cleaning myself and applying my new bag, I'll sing "Sweet Calamine" to the tune by Neil Diamond.

If I'm feeling compassionate, I make sure that there's no one else in the house beforehand.


                    





Ostomy Advice and Resources Blogs

Since getting my ostomy, I've been interested in the resources available online for ostomates (people with ostomies).


My operation scar and ostomy bag

My ostomy kit
 

An ostomy is simply a surgical diversion of the bowel, so that your poo comes out of a hole in your stomach rather than out of your bottom. I tell people that my bum is now there purely to bring aesthetic pleasure to the world, as while I have my ostomy, it has no other practical use.

 People with ostomies quickly build up a kit, a set of bags, wipes, sprays, pastes, scissors and other bits and pieces. I thought it would be useful to have an online kit of useful websites.

Particularly useful I think, are people's own blogs, where they share their experiences of living with an ostomy, and the condition that led to them needing one. Lots of bloggers have Crohns or Colitis, others have had bowel cancer, others have urostomies (some people have two bags). Every individual's experience is different, but what unites us all is our stomas and the ways we learn to cope with them.

One that impressed me today was by Jessica Weatherby called "Guts and Glory". I particularly liked this post on Bags Tips and Tricks where she shares expertise that only someone who lives with a bag everyday could gather. Jessica's story featured in the Daily Mail.

The Adventures of the Stoma Bag Lady is another good blog. I love this post "I Cant Fart" which lists 5 things people might not know about ostomies.

Colitis and ME is another great blog - this is by Victoria Marie, a key figure behind the 'Get Your Belly Out' campaign which encourages people to overcome some of the stigma associated with the stoma, by sharing pictures. Loads of people have done it - the GYBO facebook page is here, and people are using it to seek and give each other support and advice with all kinds of life issues. Another handy facebook resource is 'My Bags For Life', another ostomate fb community full of positivity and helping. I've had good support and advice from both pages. The Colostomy Association have a private facebook group which currently has 2739 members!

The Great Bowel Movement is a blog that aims to keep people talking about poop:

"We see our community fighting hard for this, doing their part in social media, through blogging, and through starting conversations, to make IBD and ostomies household names of topics of conversation. We seek opportunities to share our stories and bring all the aspects of these diseases into light, to tell everyone that we can about IBD.
But sometimes these awareness efforts have a sneaky side benefit, and that’s to help ourselves. Often when we present the question “What’s one thing you would tell to someone newly diagnosed?” one of the most common responses is, “You’re not alone.” You are not alone. You aren’t being singled out, you’re not the first one to go through this, and you’ve got a huge community of others that understand and want to lend support. And the value in putting our stories out there, not just for people unfamiliar, but for people intimately familiar, is priceless"

This story about Mark's Day on the Beach is worth a read:

"My family and I have always enjoyed the beach, and our goal this past summer was to spend time on one, soaking up the sun and swimming in the ocean. I had a little challenge, though: I’m a one-year colon cancer survivor with a permanent colostomy and a small hernia alongside my stomach. My stomach bulge is bigger than the average person’s, and that’s something that can’t be hidden on a beach"

Pretty Gutless posted this great guide on how she changes her ostomy bag. It's on tumblr, which made it easy to illustrate with loads of photos, stage by stage, which makes it really easy to follow.

I don't think any list of Ostomy blogs would be complete (not that this list is complete by any means!) without Stolen Colon, this collects together lots of different people's stories. There's some great advice here on what to do when your bag gets filled with gas.

A great Youtube Channel by an Ostomate is Laura's blog Ostomystory. Here's an excellent account of how she changes her stoma bag, it's had over 150,000 views!
 

There are plenty of myths and fears around ostomies and Blood Poop and Tears does her best to clear up 13 of them. Here's myth number 10:

"Myth #10 – I don’t know anyone with an ostomy
We are sneaky little MFers. Trust me if we don’t want you to know, you won’t. I once had a friend ask me ” Are you wearing your bag?”, (as if I had a choice). Ostomies are easily hid and concealed. Before I had an ostomy I was always shocked when I met someone who had an one because they didn’t have a sign on their head or a swarm of flys around their poop stench. We look just like you do."

One of the really best blogs is Vegan Ostomy. Being vegetarian or vegan with an ostomy has an extra set of challenges all of it's own, but this blog is rich in advice and resources that will be useful to everyone, including meat eaters. Nearly all the blogs I'm coming across are by women, so I was really pleased to see this post with a clothing guide for men.

I've given a bit of advice of my own. Here I talk about challenging stigma around stomas and cancer, and here I give some of my own tips for getting through chemotherapy.

If you want to do more than connect online, there are support groups out there. Eakin Cohesive has made a list of many groups around Europe and the Anglophone countries. They've also put up a pretty good list of some of the various online resources for ostomates.

I know that I've really only scratched the surface of some of the really great blogs and accounts that are out there, many of the blogs I've linked to link on to great lists of bloggers. If you know of a blog or website I've overlooked here (or write one yourself), I'd love you to share a link to it in the comments below, you'll be helping me by making my blog more comprehensive, and giving me and anyone who reads this post more of the information we need, as well as promoting your own blog!

I'm also hoping at some point to put up a list of great twitter accounts that cover ostomies (for example @uncoverostomy who also blogs here http://uncoverostomy.org/blog/  and @colitisninja , many of the people I've already mentioned are also on twitter - I'm always looking for new people to follow, so if you want to share your twitter handle, you can post that below too!

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.