Hooray for chemo?

I started writing this a couple of weeks ago when I was recovering from treatment. It’s funny reading it back the morning of my scan results. I have a bit of a love/hate relationship with chemo. It’s horrible stuff. It’s really nauseating and tiring and after more than 50 doses I occasionally find it difficult to feel happy about going for treatment. On those occasions I’m really grateful for the nurses who soon perk me up:

Nafisa treated me last time.  I'm so grateful for all the care the nurses at Rosemere give me.

Nafisa treated me last time. I’m so grateful for all the care the nurses at Rosemere give me.

I always seem to forget what chemo is like. It’s probably a measure of how much we manage to pack into the time between treatments, but it’s always a surprise how much it knocks me out. I don’t think I dwell too much on treatment and how nauseas and tired it makes me. If I did I probably wouldn’t want to go. 
I ran to the hospital for the last dose of chemo from that course. A novel way to travel ;)

I ran to the hospital for my chemo appontment. It was the final dose of my most recent course of treatment. I’ve never run to have treatment before, but I always run the morning before chemo. It was a novel way to travel 😉

I ran to the hospital for my chemo appontment. It was the final dose of my most recent course of treatment. I’ve never run to have treatment before, but I always run the morning before chemo. It was a novel way to travel 😉

I was really frustrated this week. Being stuck in bed for days is tedious. I’m an active person and when I’m not stuck in bed I’m out running, cycling and lifting weights in the gym. I know how lucky I am. I probably get more exercise than anyone receiving cancer treatment has a right to expect, so I should probably be more laid back about not being able to train. I should be more kind to myself, but I know my level of activity gives my cancer a battering. According to Macmillan’s Move More report, bowel cancer patients that get 6 hours moderate intensity exercise a week can reduce their risk of dying from the disease by around 50% and, generally speaking, the fitter I get the more I can tolerate chemo. I know exercise helps me, so I feel extremely motivated to train as often and as hard as I can. There is a fine line between dedication and obsession though and this week in my frustration I may have lost sight of where it is.
I was out running and going to the gym days after I wrote this. I should have had more patience with myself!

I was out running and going to the gym days after I wrote this. I should have had more patience with myself!

I think anyone would feel the same. It’s great having the chance to watch movies and TV shows, but there’s only so much you can watch before you start to go bonkers. I wonder how other cancer patients manage. 
I love the running and the beautiful sights I get to see when I'm out pounding the streets. It's one of the things I miss when I'm in bed after chemo.

I love the running and the beautiful sights I get to see when I’m out pounding the streets. It’s one of the things I miss when I’m in bed after chemo.

No matter how difficult or annoying it is for me it’s much harder work for my family, especially my wife Louise. It’s not easy for her caring for me as I languish in bed. I lose count of the number off times she makes the trip up and down the stairs bringing me food, drink and helping me to feel less isolated during my time convalescing. She has a job and three children to feed, take to nursery and two different schools and extra curricular activities. It’s a struggle for and I honestly don’t know how she manages. When I rise from my slumber she’ll apologise for the state of the house, but I just think It’s amazing how she’s kept us going and all fed and the girls in clean clothes each morning.
She’d never say or even suggest it, but I still feel a bit of a burden. I also worry about the impact my being in bed has on the girls. It can’t be easy for them to see me in bed and so weak. 
Ran my 15th marathon yesterday. Feel so lucky to be able to run! I hope my results are good, so I can plan more marathons!

Ran my 15th marathon with my friend Fay yesterday. Feel so lucky to be able to run! I hope my results are good, so I can plan more marathons!

It is funny reading this back today of all days. I don’t think cancer treatment is something anyone ever actively enjoys. It’s interesting to read back and see how frustrated I get sometimes and how worried I get about the effect it has on my family, but as I often say chemo is better than the alternative. Sometimes I don’t want to go for treatment, but I know how lucky I’ve been to have treatment options and I’ll never complain about having chemo. Lots of people would love to be in my situation and be receiving treatment. It has prolonged my life. Our Oncologist gave me 6-12 months to live 28 months ago, in that time I’ve done so much. I’ve run 15 marathons and with our friends and family we’ve raised more than £30,000 for charity, but the best thing of all has been celebrating two birthdays with all three of my daughters. I’ve lived long enough to have lovely, proper conversations with my youngest, see my middle daughter start school and my eldest approach the end of primary school. I know that treatment (and my exercise) has given me so much more life. If this is my life- to go for treatment every fortnight I’ll happily take it.
Out for a walk with my girls. My eldest recently took off the stabilisers on her bike. Very proud!

Out for a walk with my girls. My eldest recently took off the stabilisers on her bike. Very proud!

I may have the occasional grumble or frustration with treatment and side effects, but right now I just want to hear the news that my scan results are positive and that my cancer hasn’t grown or spread. I yearn for nothing more than the opportunity to have more treatment. No matter how tough treatment can be booking my next chemo appointment is going to be fantastic.
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Scan results come back good…

Apologies for not posting anything for a while, it’s been a hectic time lately. We finished the course of chemo I was going through then I had a CT scan to make sure the treatment worked, before we resumed chemo again. As I mentioned in my last post the scan at the end of treatment is always the time when I get a little anxious. This was no different, in fact I think I was a lot more apprehensive then usual. Perhaps, it was because everything has been going so well lately. I feel fit, but not just fit, strong and healthy too. I’ve been eating well, lifting weights, doing sit ups (but being careful not to herniate my stoma), press ups and of course running.

 

Been feeling great lately and running up big hills like this one at White Coppice.

Been feeling great lately and running up big hills like this one at White Coppice.

It's been great to go running with Louise lately. Perhaps she might run a marathon with me? ;)

It’s been great to go running with Louise lately. Perhaps she might run a marathon with me? 😉

 

 

 

 

 

 

 

 

 

 

I feel great, so was a little concerned that things were almost going a little too well. Lots of people offered me support on Twitter and Facebook. I was quite worried, so all that support was very important to me and helped me before we went to the hospital for the scan and then the results. Anyway, after waiting for a week and getting all nervous all over again we went to see my wonderful Oncologist. He’s seriously fantastic. A friend of mine is fond of saying that people enter your life for a reason. There’s clearly a very straightforward explanation why our Oncologist is in our life. I have have Bowel Cancer, live in Preston and receive treatment at RPH, but I could have lived in a different town, had a different type of cancer and a different medical team. That might sound fanciful, but it’s at least true that I could have been assigned another oncologist at RPH. Regardless of how or why we have our oncologist I’m glad he’s ours!! On scan results day we often try to read the expression on his face, to see what the news is, when he walks in. He’s an amiable, cheery chap, though, so isn’t always easy to read. We were very relieved when he told us we had good news! My cancer is stable and hasn’t grown or spread. He also told us I’d need an ultrasound (which I had last week) because the people performing the scan couldn’t find a vein properly due to how rubbish my veins have become after 15 months of chemo in two years. They did inject the dye, but the vein collapsed (and caused me no small amount of pain, I didn’t scream though, which is usually what happens they said).

 

My arm more than a week after the failed attempt to inject me with imaging dye

My arm more than a week after the failed attempt to inject me with imaging dye

 

The ultrasound showed no abnormalities in my liver. The doctor who did the scan also performed most of the scans, which led to my diagnosis two years ago. He was as kind and gentle last week as he was two years ago. I have been fortunate with the doctors I have had!

While talking to our Oncologist following our good news he revealed to us that he plans to come to my next Marathon at Windermere. It was as much as Louise and I could both stand and we almost wept in front of him. Think we managed to maintain our dignity until he’d left the room or at least I hope so! The list of reasons why he’s awesome is becoming almost exhaustive, but suffice to say we were bowled over. I haven’t heard of a busy, hard working Consultant taking time out to watch a reckless patient embarrass himself on a hilly marathon course. Amazing! Certainly can’t let myself down now.  Its given me a little more motivation to train harder, if any was needed.

 

 

In the Lakes to recce the Windermere Marathon route

In the Lakes to recce the Windermere Marathon route

 

Before we left clinic we discussed the possibility of a break in treatment. I hadn’t realised how greedy I’d become and he gently delivered a little reality check. I wanted a break to help me train for and run Marathons. However, as he pointed out, the only reason for taking a break from treatment was if my quality of life was suffering ie. if I was suffering from bad fatigue, sickness, loss of appetite or anything else related to the side effects of treatment. He pointed out that if I’m well enough to run marathons then I hadn’t any great quality of life issues. I have always been grateful to be able run and do other exercise and it hadn’t ever occurred to me that I might be asking too much. I’m happy to push myself and try and defy popular wisdom around what terminal cancer patients can achieve, but that shouldn’t be at the expense of treatment or family. Louise my wife has reason enough to be cross with me, especially recently when I turned up half an hour late for church after a long run.

 

My beautiful wife Louise always makes sure I make time for training, but also that it doesn't completely take over

My beautiful wife Louise always makes sure I make time for training, but also that it doesn’t completely take over

 

Perhaps sometimes the running takes over a little and I need to achieve a better balance. I’m grateful to our Oncologist and Louise for gently reminding me of the balance that needs to be struck between life, treatment and running.

 

The three of us decided that I would resume treatment the week after, so balance was restored. Treatment is the foundation of my well being and it’s an understatement to say that running certainly would be difficult if my cancer grew or spread. Obviously that could happen at any time if my treatment stopped working, so there’s no point in making things more difficult for myself.

 

Starting chemo again. My sixth course in total. Note my cheerful tee. I always try to get my head in the right place for treatment

Starting chemo again. My sixth course in total. Note my cheerful tee. I always try to get my head in the right place for treatment

 

We were very happy indeed we as left hospital. So happy in fact that we both felt like carefree teenagers madly in love with each other. The relief at getting good scan results is huge and it briefly removes the spectre hanging over us. This feeling gives us an idea of what life could be if not for cancer. It’s not a depressing thought though. It just makes us feel extra grateful for good news and the times when we get to forget about it all. Besides, regardless of our situation, it’s great to feel in love with each other. Louise’s parents have given us huge support throughout my illness and have travelled over from Leeds at least once week since. They were looking after the girls that morning, so Louise and I went for a pub lunch. We had a happy, soppy time gazing lovingly at each other. On the way out we visited the conveniences and shared a kiss as we temporarily went our separate ways. There was a table of good old boys putting the world to rites who shouted for us to ‘get a room’. Louise was already talking to them as I came out of the toilet. It was good, jovial stuff and I shared with them the reason for our display of affection and they offered us congratulations and shook my hand. There’s moments in life that bind you to the rest of humanity and give you the opportunity to share something that people have a universal understanding of, like getting married or the birth of a child. Getting good scan results is definitely worth sharing with other people.

 

Love my girls. They really give me a boost. I want to do my best in the races for them.

Love my girls. They really give me a boost. I want to do my best in the races for them.

 

I then ran the 3-4 miles home from the hospital. I was determined to do that run come what may and I’m really glad we’d had positive results. Can’t imagine what that run would have been like otherwise. Even still I’d just had a nice lunch and tried getting out of it, but Louise wouldn’t let me. It was quite a hard run. It was warm and I’d not run in a while due to a nasty blister occupying the instep of my right foot. I got it during the Blackpool Marathon and because I don’t have an immune system it became infected.

 

My blister. Probably a little tto nasty for a blog post. Comment if you don't like it and I take it down :)

My blister. It stopped me running for weeks. Probably a little too nasty for a blog post. Comment if you don’t like it and I’ll take it down 🙂

 

I started off hard and then ran out of steam, but I wasn’t bothered about pacing it just was great to feel the wind in my… face. 6 days until my second marathon in Windermere. Can’t wait!

 

Added motivation provided by the gorgeous scenery around Lake Windermere

Added motivation provided by the gorgeous scenery around Lake Windermere

 

Ben’s Bowel Movements. Running 6 marathons in 6 months in support of Cancer charities:
http://uk.virginmoneygiving.com/BensBowelMovements

Twitter:
@ChemoDadRuns

 

 

Chemo is great…

The day after my first marathon I had my last dose of chemo of this current course. Quite a gruelling experience at the best of times, but a bit nuts after running a marathon. However, before I made it to hospital, I was invited on to the BBC Radio Lancashire breakfast show again to talk about my marathon. I was very tired, but Louise says it went ok.

When we got to the hospital one of the nurses called out that she’d seen me on the TV news. It was really sweet, but she did it in front lots of other patients in the clinic waiting room and I was a little shy about it all. I don’t feel I really deserve to be singled out, especially in front of fellow patients, some of whom have it a lot harder than me. It was a bit of a sign of things to come as a few others would also say nice things about my marathon run. I guess it shows the strength of the relationships we’ve built up with Doctors, Nurses and other staff at the hospital. We are lucky that the people we know, at hospital and elsewhere, like us and want to share in our successes, which is brilliant. But I’m just some bloke with cancer that runs a bit and it feels strange when people say very kind things to me, like I’m inspirational. I feel unworthy of comments like that and it’s really difficult to take sometimes. I feel like in my Cancer Adventure that I’m merely reacting to circumstance. All I’ve really done is maintain a positive attitude, admittedly through some pretty difficult circumstances. I know a handful of people that I feel are genuinely inspirational, people who give up their time to help others, in ways I could only dream of. In the situation I find myself in I’ve just looked after myself and often struggle even to do that. Let alone look after my family. Pete, a friend of mine said that people come away from talking to me about my cancer, and the seriousness of my illness, feeling happy and uplifted. He thinks this is because I’m very positive and don’t get let things bog me down. Not simply that, but he said I never let my situation get anyone else down either. I guess he’s right. I always like to make light of my situation and concentrate on all the good things that have happened to me. You never know how you’ll react or behave if something like cancer happens to you and it’s pleasing to me that I’ve managed to maintain a positive attitude through it all. Like lots of other patients I like using humour as an antidote to the stresses of cancer. I like to tell jokes about the things that have happened to me. Two years in I’ve got a lot of material. Louise, bless her, has heard them all a million times and rolls her eyes whenever I trot them out. I blame my Dad; I’ve definitely inherited his poor sense of humour!

 

Anyway, a few other people on that treatment day said some very sweet things. I’m very grateful to them. I’ll remember all the things they said and do my best to use their positive messages to give me energy on my training runs and marathons. After a short wait we got to see our Oncologist, but before he came in a few nurses we know from clinic came into his consultation room to see us. It was lovely to see them all. We’ve known many of them for while and I’ve talked to a few of them about my running and the distances I’ve managed, so to see them the day after my first marathon was really great. After they left my Oncologist came in and we then spent more time discussing my race than we did discussing my treatment. He said some special things and praised me for running the marathon. I told him what I’d said on the radio the week before that he’s a special doctor, one that’s encouraged me to live life and squeeze the most out of the time I have left. I really feel that his care and attitude is definitely one of the core reasons I’m running marathons.

Had a really difficult run, but it's difficult to be glum, with lovely daughters like baby Heidi.

Had a really difficult training run in the week, but it’s difficult to be glum with lovely daughters like baby Heidi. I wouldn’t even be running at all if it wasn’t for the medical care I’ve received.

Turns out I’m the third patient in his care to run a marathon, which I think says a lot about how he encourages and enables his patients to achieve. I pointed this out to him, but in typically humble fashion he told me that it was all down to me and my attitude. Such a wonderful thing to say.

 

Another such man who’s also had a positive role in my treatment was the surgeon who operated on my bowel and gave me life in March 2012. We’d not really seen him since I’d recovered from surgery and hadn’t actually gone to see him, but instead a colorectal nurse who’s been a rock to us for the past two years. She was working in the Bowel Surgeon’s clinic and when he heard we were there he asked to see us too. He’d seen me on the news the night before and told me I’m an inspiration to many in my situation. Like the kind words my Oncologist said to me it was difficult to take especially as, just like our Oncologist, my Bowel Surgeon is one of the kindest and most compassionate doctors I’ve ever met.

My bowel surgeon. He removed my cancerous colon in March 2012 and gave me life.

My surgeon. He removed my cancerous colon in March 2012 and gave me life.

Neither of them have any of the hubris and ego that might be associated with other high achieving doctors. Regardless of the whys and wherefores of the things they said about me it’s certain that my Oncologist, Bowel Surgeon and others at the hospitals I’ve been treated at are the reason I can run now! But as I left the clinic I couldn’t resist having a chuckle with the nurses about how much I was limping with all my post marathon aches and pains. The nurses in the treatment room, when I went for chemo later that morning, were equally as kind as the other medical staff I’d seen earlier. The nurse who administered my drugs encouraged me to wear my medal. I must say though, I felt I little ridiculous wearing it as the day wore on. I got more and more nauseous and felt further and further removed from my marathon running self of a day earlier.

 

I’ve now come to the end of my course of treatment, so tomorrow (22/04/14) I will be having that most anxiety inspiring of medical procedures for any cancer patient, the dreaded scan. I always think of chemo as being a bubble. Chemo is great. That might sound a little perverse, but I’m given a course of treatment that lasts 12 weeks and nothing can really happen to me in that time. While I’m receiving treatment as far as I, or anyone else is aware, I’m doing well, my health is great and my cancer isn’t growing. During treatment I don’t have any serous concerns and I’m not worried about anything. I just get on with life, spending time with my girls, running, just normal stuff.

Being on chemo means I can just get on and live life with my wife and girls. They still might not thank me for taking them to see Stoke though.

Being on chemo means I can just get on and live life with my wife and girls. It’s unlikely they’ll thank me for taking them to see Stoke though.

The difficulties come with the last dose of chemo and the discussion of scan dates and dates for the post scan clinic appointment, when we get to hear our news. Even still, I won’t be dwelling too much on possible scan outcomes. I tend not to spend too much time agonising over things I can’t control, so it’s not going to get me down. Besides, the time spent lying down on the scan machine is always a great time for prayer and meditation.

 

Ben’s Bowel Movements. Running 6 marathons in 6 months in support of Cancer charities:

http://uk.virginmoneygiving.com/BensBowelMovements

Twitter:
@ChemoDadRuns