Goals

My fifth and penultimate chemotherapy session is tomorrow (hooray!). I have to take super high doses of steroids with this chemo, consequently this evening I am buzzing and wide awake. Not to mention melting in the heat of our June heatwave, and wishing to distract myself from the horrors in our beautiful capital of the past week. 

I thought I’d share how important I’m finding having goals to help me through treatment. Hopefully this won’t read as a management training guide….. 

Project Lumpy, one step at a time

My treatment has a number of phases

• Diagnosis (welcome to your new world! Get with the cancer club quick, because we don’t have time to hang around)
• Surgery (bye bye tumour! Hello scars and a new body, hopefully cancer free)
• Chemotherapy (hair today, gone tomorrow! I’ve resisted that joke for weeks…. This is the phase where I lose myself, but find myself again. And again and again. Unfortunately it’s also one of the longest phases)
• Radiotherapy (shorter, but could be tiring with its daily hospital visits)
• Tamoxifen (the longest phase, being at least five years)
• Then I’ll pop out the other end of active treatment and fashion my new reality. 

Phew, that’s a big project. 

From the start, this was unknown and overwhelming. I researched and educated myself so I could hope for the best and prepare for the worse. It was clear I needed to break it down in to manageable chunks (SMART objectives anyone?) For this I drew on my career as a manager, but also my running and cycling experiences.

Some of what running and cycling has taught me

When I set myself a goal of a 100 mile bike ride, there are months of training, then achieving the 100 mile ride itself. I feel like the last 15 years or so of my life have been, unwittingly, preparation for my cancer and its treatment. By this I mean: enjoying life (time with friends and family, travel, culture) especially to counteract the stresses of life, getting and staying fit, a relatively healthy diet, always being a healthy weight, yoga and mindfulness, living somewhere I love. Don’t misunderstand me, I’m no angel – I’ve loved drinking, spent too many hours at work over the years and been more stressed than is healthy. But on balance, I felt emotionally and physically resilient going in to treatment, the strongest I’ve been.

The treatment itself is the bike ride. When I’ve run half marathons or long bike rides I’ve learnt that breaking it down to goals gets me through. I didn’t invent this, it’s standard practise. And your brain usually gives up before your body does in such events, so finding the psychological plan is key. So, my first goal may be the feed station at mile 19 where I know there’ll be flapjacks, then the first killer hill at mile 28 with a thigh killing, lung bursting 18% incline (followed by, “yippee, I did it!” as I free wheel the descent at 38mph) and so on. 

Experience has also shown me that I get a dip mid way on all long rides and runs. I start to tire, pain or injuries start to niggle, and the end is not in sight yet.  This is what happens in my head:

“I can’t do this”

“What???”

“Shall I take a shorter route?”

“You trained for this, don’t let yourself down! You’ll only beat yourself up!”

“But I’m really not enjoying this, and there are still 60 miles to go, not even half way yet. Maybe I didn’t train enough”

“What, all those 5.30am starts on a Sunday morning, you’re going to waste that? Get over yourself” 

“But it hurts”

“You can do this. Keep going”

“But I’m tired”

“There are flapjacks 10 miles from here. Chewy, buttery flapjacks”

“Mmm, well I can do another 10 miles….”

And sometimes at this point another cyclist passes me (a very common occurrence, most road cyclists are men and I’m slow anyway, so it’s normal for me to be overtaken. I’ve seen hundreds of men’s bums in Lycra) and that cyclist will say something funny, we’ll share a joke or we moan about/praise the weather or curse the hills. And that fleeting human connection and shared experience can be a massive boost and push me on.

My treatment has been so similar to this – one phase at a time, then one chemotherapy at a time, set goals and rewards and remember there is a mid way dip, but I’ll get through it. The thick treacle after chemo #3 was a huge dip, and I could happily have given up at that point. But having goals and the support of family, friends and strangers are all invaluable. I may have more dips to come. I hope not. 

Aside from the treatment goals, I also set recent goals of Race For Life, The Pink Ribbon Tour and my talk at The Haven’s fundraiser.

The Haven Grand Garden Party Fundraiser

As I wrote about in a previous post, I was asked to talk for a few minutes about what this fabulous charity means for someone with breast cancer at their fundraiser last week. I felt so privileged to have this opportunity.

Chemo brain, fatigue and public speaking are not a good combination, so I was very apprehensive but equally determined to do the talk, and to do it well.

I’ve attached the video (hope my limited technical ability hasn’t scuppered the upload) so you can judge for yourself. I was shocked to see how my hair looks, and it is not the best public speaking I have ever done, but I’m pleased overall. A number of guests, including women touched by breast cancer, sought me out afterwards to thank me, which was so humbling. Most importantly, The Haven raised oodles of money. Brilliant.

And my mum, brother and some dear friends were with me, which made it a very special evening. 

Needless to say, I was completely wiped out for two days afterwards. But it was worth it. 

Now I need to set some more goals.  

 

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Racing through chemo

Well the UK is a different place since I last wrote. Two appalling, vile, heart breaking terrorist attacks and a general election unlike any we have ever seen. Fear not, I won’t get all political. But it just reinforces for me how important it is that we live the best lives we can, and show humanity and kindness to ourselves and each other.

Shine Connect

Shine is a charity  providing support for young adults (20’s, 30’s, 40’s) with cancer. I went to their recent Connect conference, and it was a great day. Lots of useful information as well as the invaluable opportunity to meet others in the same situation. It’s humbling to hear from others and their cancer stories. For instance, one speaker had had 50 cycles of chemotherapy. There’s a unity in being with others living with cancer, and a real sense of hope and living as fully as we can.

One of the most interesting sessions was a talk from Professor Petticrew. Along with some of his colleagues, a few years ago he was able to demonstrate that the link between stress and cancer was a fabrication of the tobacco industry. It was known as early as 1940’s that smoking caused lung cancer. To divert attention from this, the tobacco industry funded a huge amount of research to link stress and cancer, hence moving the spotlight off smoking. Scandalous and fascinating. I wonder how much of this is going on right now with the food and cosmetic industries.

At the conference, I met a wonderful woman, Fiona Murphy, who has set up a service Sparkle Through Chemo. Fiona was diagnosed with cancer at 25, and saw how little provision of beauty treatments there was for those undergoing cancer treatment. So she did something about it, got herself fully qualified and now offers wonderful treatments and products. I have since had a fabulous manicure and pedicure as well as great advice to help me keep my nails through chemo.

Chemotherapy #4

This was the first of three cycles of docetaxel, a step in to the unknown. What would this treacle be like?

I was given a high dosage of steroids to take the day before to counteract some of the side effects. Steroids make you quite wired and weird, so I had very little sleep the night before my chemotherapy. The infusion itself went well. My vein was usable, if sore. And the good news is I only have to wear the cold cap for two and a half hours with this drug, not three hours as on FEC. The combination of my tiredness and getting cold saw my heart rate drop to 42, so the chemo nurses wouldn’t let me leave until they could be sure I wouldn’t pass out.

I was quite exhausted that night, although the steroids kept me buzzing and awake. I woke up the next day, and to my surprise I felt ok. Tired, nauseous and foggy headed, but ok. The same the next day, I even went to a spin class. Then that evening I could feel the pain come on, starting at my feet and working up my legs. It’s quite bizarre to be lying in bed and to feel pain in your ankles and knees even though you have done nothing. I established a routine of alternating paracetemol and nurofen to the maximum daily dose, and it made the pain tolerable, although I was housebound for five days. And I had a lot of baths to ease the aches.

The other pain was in my pelvis. For five days, I inject myself in the tummy with a drug that boosts blood cell production to get my immune system back up and running. My nurse explained to me that this starts in the bone marrow in the pelvis, hence the pain. So, at least I knew the pain was my body doing its thing and recovering.

Unfortunately food and drink is all vile at this treacle cafe. Everything tastes yuck, especially all drinks. I’ve learnt that spicy food, with more flavour, is better, so I’m trying out lots of new Indian recipes. No bad thing as I could happily live on dahl.

And fatigue is ongoing, I guess this side effect really is cumulative. Not helped by broken sleep – I am now getting head sweats that wake me up, I think it may be the start of menopausal symptoms. It is as gross as it sounds.

It takes me a good couple of hours to get going in the morning. But I pace myself, and it’s manageable. I think it also adds to the chemo brain.

Overall, I have found docetaxel easier that FEC (so far). I had an EFT session, and this without doubt helped my anxiety levels. Those five days were dark, but not the molasses that I experienced after #3.

Chemo brain – quite alarming

It’s ironic that I have to remember to take oodles of drugs and yet my brain is uncharacteristically forgetful at the moment. So, I set alarms on my phone to remind me to take my drugs.

On my good week, I went to see Romeo and Juliet at The Globe (a very modern interpretation – the cast broke in to YMCA at one point). In the final act, as Juliet is riven with angst about taking the poison that may enable her to reunite with her true love, what should break the spell but the sound of an iPhone alarm? Shit, shit, shit! Frantic handbag fumbling to find the damn thing and turn it off. I did not know that the alarm works even though phone is turned to silent. Ooops, sorry fellow theatre goers.

Keeping fit, pushing on

When I was diagnosed, some of my first concerns were going bald, losing fitness and putting on weight. I’ve put a lot of focus on these areas, and what works really well for me is having goals. So, a few weeks ago I signed up to Race For Life and the Pink Ribbon Tour. Intentionally, I did not broadcast this as I knew chemo could take away my ability to do them, but internally I was determined I would. And I did.

For a number of years, I have completed Race For Life with one of my good friends who organises it for a group of us. I have always run it. And in all those years, it never occurred to me that one day it would be me who was the one with cancer.

What an amazing event. Hundreds of women in pink, some running the 5km in 20 minutes, others walking it in over an hour, but all doing it and raising funds and awareness. The sign on my back led to a number of women offering me their support, a reassuring arm squeeze, a hug, or just a smile of encouragement. I walked it, but I bloody well did it. The next day I felt like I’d run a half marathon and it took me a couple of days to recover, but it was worth it.

Then this Sunday I cycled the Pink Ribbon Tour a 25km route through central London, all in aid of Breast Cancer Care, which is the charity affiliated with this year’s Women’s Tour ( a pro cycling race – they go about twice as I fast as I do!). After signing up, I received an email from the organisers, with this request:

“102 professional women cyclists will be taking part and we want them all to carry a pink ribbon with a personal message of support from someone affected by breast cancer. The cyclists will then carry this ribbon with them as they cycle across the UK and wear the ribbons on their helmets in the final stage through London”

So, one of the pro cyclists had my message on a ribbon with her for the tour. How amazing is that?

As for my 25km (amateur) tour, I’m proud to stay I stayed in the lead group and finished in just under an hour. It was fantastic. Cycling the 8 miles home afterwards was not so great…..

There was lots of support from fellow cyclists, huge crowds and the sun shone on us. One cyclist gave me a high five when she learnt I was having chemo. Like the Race For Life, the cycle ride wiped me out and left my legs very sore, but it was worth it. Amazing memories, a sense of achievement, and a reminder of the huge support there is out there.

Life’s for living

After the Race For Life, I walked over the beautiful Albert Bridge to catch a bus. It occurred to me that being on London bridges now has a new sense of danger about it. But then having cancer is pretty dangerous too, and that isn’t stopping me.

Hair still hanging in there

I’ve been really lucky so far with my hair. Spiteful as the cold cap is, it’s prevented me going bald. The rate of hair loss seems to have slowed down, so I am hoping it doesn’t get much worse. I’m still resisting the wig!

I’ve lost half my eye lashes and eyebrows, as well as most other body hair. Thank goodness for eye make up, I can look like I have some facial features when I go out. Although mascara is a no-no as my eyes water so much more with fewer eyelashes. I know I can look rough, but Alice Cooper is never a good look. And I don’t recommend eating a curry in polite company when you’ve lost most of your nasal hair, you spend half the meal catching the nasal drips. Nice.

Saint Nora

The lovely St Nora has been generous yet again. Thank you, thank you.