FEC cycle

Breast cancer lesson number 92: Embrace the change of pace

Yesterday, I was defeated by the vacuum cleaner. Strange as it may sound, a piece of plastic (albeit a well-crafted one) with multiple arm extensions brought a dust cloud to my otherwise bright and sunny day.

It could have waited a little while longer (even though the moths are getting a little friendly). I really didn’t need to clean the whole house. But, never one to leave a job unfinished, I dug out the vacuum after a lovely day with friends and had a good go at the carpet. And, you know what? I really wish I hadn’t.

Now before you think I’ve lost the plot, this is not a blog post about vacuuming (fun as I know that would be). This is the post about just how hard it is to go from the active, always-on-the-go Jackie with her ultimate to-do list to the chemo Jackie who often needs a bit of a sit down. Satisfaction comes from a to-do list that goes down not up. And, currently it feels like the list is getting longer by the day.

The trouble is, I wasn’t exactly overdoing it. A drive to see good friends, a short walk and a few household chores does not a packed day make. Admittedly, I probably should have saved the hob cleaning for another day, and didn’t need to do that second load of laundry. But, when chemo gifts you a window of energy, it’s really hard not to grab it.

Chemo fatigue is something about which I haven’t written so far. That’s not because I didn’t know about it or hadn’t experienced it. It’s because I thought that by not mentioning it, it might just go away. No one wants to feel like they’ve run the marathon when they’ve only just climbed the stairs – especially not at the age of 32. I spent my 20s watching friends have fun on the dance floor while I battled hip pain. I thought I’d be the one to set the pace in my 30s. Maybe next year…

The truth is, I have no choice but to slow it down. And, if I’m honest, that’s probably no bad thing. Nobody needs to watch TV while simultaneously tidying the coffee table, sorting papers and writing a shopping list. The dust can wait for another day (along with the wonky doorstop and the half-painted wall). Fighting cancer drugs is enough for most agendas and, for now, it has to be enough for me too.

Of course, the physios and occupational therapists do have a few tricks up their sleeves to help us make the most of every day. The secret? Pacing! The aim is to avoid getting into an overactivity-rest cycle. That means doing little and often every day to build up strength rather than trying to cram in a whole week’s worth of activity into one day just because you feel well (and then needing a few days to recover). That does mean planning in tasks (and sticking to the plan), but the plan has to be realistic! The motto is ‘do what you planned – not what you feel like’. It sounds simple. But, when running before you can walk is your default position, it takes a bit of getting used to.

So, for now, I shall try my best to sit back and enjoy this change of pace. And, if you are currently in the middle of a chemo cycle (or about to start), I hope you can too.

Just don’t expect a fluff-free floor on your next visit!

Breast cancer lesson number 90: Life is short. There is no time to leave important words unsaid

I am grateful that last night was just a night of sweats, broken sleep and nasty nausea rather than a night wedded to the washing-up bowl (I must stress the bowl has been retired from active washing-up duty in case you were worried). And, looking at the faces of mum and Duncan in the morning, I think I wasn’t the only one who was grateful!

I made it through. But I had to dig deep. The nausea and night sweats were among the worst I have ever endured. The Aprepitant drug worked wonders on the sickness and the quick hat and sock changes helped with the hot flushes. But there is one other trick I’d like to share, which – in between the waves of nausea – made the whole experience memorable in a more positive way.

I have never been one for counting sheep or filling my mind with the colour blue in an attempt to drift off. So, last night I introduced a new technique. From the beginning, I listed out all the wonderful and kind messages and gestures people have sent through over the last four months. By this, I don’t just mean the obvious. By this, I mean the well-timed tips, the lucky pre-surgery safety pin, the comment from an old schoolfriend about what she thought of me back then and how I hadn’t changed, the thank you from a girl I once helped in a small way and never thought much of it. Just yesterday, a lady I had met a month ago and showered in cancer-related tips stopped me in reception to thank me for my kindness. Those words meant everything to me. Each one of these moments has made an indelible mark on my heart. And, yesterday, I used them to build a patchwork quilt of happiness to comfort me at my lowest ebb. The great thing is, when I got out of bed this morning I smiled knowing that I have just scratched the surface, with many more patches to add.

Being at the receiving end of a lifetime of kindness has got me thinking about just how much we really say to those that inspire us and make us smile. When was the last time you turned to a friend and thanked them for just being there? When was the last time you contacted an old acquaintance and told them just how big an impression they have made on your life? When was the last time you thanked someone and meant it from the bottom of your heart? People can’t guess you’re your thinking unless you tell them. When the business of life gets in the way, it is hard to step back, reflect and not take all those you love and admire for granted. But, I can tell you now, there is so much I want to say to people while they are still around to hear it! People come and go in life, tucked away in chapters. But, their kindness will live on through you. I’d love to think that if someone were to cut me open (in a nice, non-cancer-surgery kind of way), I would be made up all of the brilliant people who have touched my life.

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So, I have chosen today, laced as it might be with a cocktail of drugs and a vat load of liquid, as the day to hand out my first pink hearts. The first is for my astonishing and truly wonderful mum who is one of the most beautiful people you’ll ever meet. She may weigh less than me currently (although we are having words), and she may not be able to take the pain of a cancer diagnosis away, but she has made living with it as comfortable and relaxing as possible. She has put her life on hold, so that I have the chance to get mine back. As a daughter, I have not always thanked my mother quite as often as I should. But she means everything to me and I plan to spend the rest of my days reminding her of that. While I won’t share the contents of my letter with you, I will share one line: ‘Life is no easy street, but you have made walking down it, so much more enjoyable.’

And, the second heart? You’ll just have to wait and see! I will also be posting more details of my pink heart plan (first mentioned in lesson number 30 – click here) in the weeks to some to inspire others to send ripples of kindness all across the world.

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All I ask is that you take a moment of your day to thank someone who matters to you. What is it about them that makes you smile? What it is you should have told them years ago, but never thought to mention? How have they helped make you the person you are today? I guarantee you’ll feel good saying it – but not as good as the person hearing it (especially if it’s for the first time).

Make today the day you start following your heart. Trust me, there’s no time to lose.

NB: it will take years to deliver all these hearts, so do bear with me. The accompanying letters are all handwritten and contain a piece of my heart. Plus, I have to make sure I don’t get arm ache! 

Breast cancer lesson number 84: You’re a person, not a hospital number

There are so many things I love about the NHS. There is, however, one thing I don’t. It’s the administration. Why do I have to be the one to join the dots? Why is it that when there are plenty of other things for me to worry about, is it the one thing filling up my thoughts by night and my mobile minutes by day. The NHS is made up of wonderful hard-working people who really care. It’s just such a shame the systems connecting those people together don’t.

Today’s administrative conundrum reduced me to tears. Here’s why:

1)    Three weeks ago, my oncologist in the Monday clinic took the decision that, having coped so well with the first round of chemo, I could be referred to a nurse-led programme for the remainder of my treatment. I happily agreed and was booked in for an appointment on Wednesday 7 May. Tick.

2)    At my second chemo session on 23 April, the receptionist informed me that I couldn’t attend the clinic on a Wednesday if I am to keep my three-week Wednesday cycles. Wednesday 7 May is a week before round three and therefore too early for blood tests. She suggested I call the breast care nurses to schedule an appointment at the Monday clinic again. Made sense to me!

3)    The breast care nurses were lovely as ever and confirmed that a Monday clinic appointment was needed and, a few days later, a letter arrived through the post. They cancelled my nurse-led appointment. Tick.

4)    Yesterday (Wednesday 7 May) I received a call querying why I wasn’t at the hospital for my nurse-led appointment. I explained the situation and the fact that I was led to believe the appointment had been cancelled. The lady informed me that I no longer qualified for the Monday clinic (I guess because I am a relatively well sick person) and that this appointment would need to be cancelled. Instead I would need to attend the Wednesday 14 May clinic at 10am and then have my chemo at 11am the same day. I agreed.

5)    Once the call had ended, I felt a bit concerned about the timings. Usually a blood test should happen about two hours before chemo so that the results can be processed and the chemo drugs prepared. As a result, I decided to double-check the timings at my PICC line dressing change appointment this morning.

6)    The receptionist confirmed that my Monday appointment had been cancelled, but that the nurse-led appointment was 11am (not 10am) and therefore at the same time as chemo. She added that I am not supposed to have the two on the same day (had I not queried it, I imagine my chemo would have been cancelled when I turned up next week). Wednesday clinic means Friday chemo. She confirmed that my chemo would now have to be moved, at which point the tears started to flow.

7)    After a few more calls, the receptionist confirmed that I would need to come to hospital on Wednesday for blood tests and to see the nurse. I would then (providing the test results were positive) need to return on the Thursday for the drugs. From chemo four onwards, I would need to attend the Wednesday clinic with Friday chemo. Happy Friday to me!

In chemo land, two days is a long time. By nudging my chemo to the end of the week, three months of careful planning (weddings, parties, training, holidays, train trips) were thrown into question in the space of half an hour. I am determined to make every single event. I just wish I didn’t have to dig deep (and maybe even pack a my old washing-up bowl) to do so!

I get it. Put the well people on the Friday list so they won’t clog up A&E on a Saturday. I don’t mind being a well person (the alternative is not particularly attractive). It’s just not great to feel that no one really wants to see you and that I am being shuffled around the system to make room for everyone else. I need someone to help me control the vomiting. I want to discuss my ice-cream headaches and my taste problems. I need my next Zoladex prescription. Plus, my diary is just one big mess of scribbled out appointments and I like tidy pages. Even my appointment card has tip-ex on it!

I have a voicemail message on my phone. I think there’s an apology coming. I just wish I didn’t have to let the tears flow to get it – and a proper appointment.

This cancer stuff is hard enough without having to worry about getting a seat at the clinic (or a chemo chair). I’m a person (and a very accommodating one at that), not a hospital number in the system. Dear NHS, please don’t forget me.

NB: as an amusing aside, I met someone for lunch today who I hadn’t seen for years. I was out in Suzie (he didn’t know, so I thought it only fair to act normal). What was the first thing he said to me? ‘Wow, you’ve changed your hair since we last met.’ He will never know why this one sentence made me smile so much. Suzie is obviously pretty convincing! 

Breast cancer lesson number 83: Dare to bare!

Today I conducted an experiment on behalf of every woman currently grappling with the physical effects of cancer. I left my hats and my ‘fake’ hair at home, threw caution to wind and started out on my commute across the capital with my bald head in full view.

For me, it was bold (or bald). London, however, with its preoccupied commuters and eclectic fashion sense has a great way of looking in the opposite direction. With the exception of a few pitying stares and a couple of double takes, I was just another person navigating the crowds to get to my destination. I didn’t want a seat. I didn’t want a hand. I just wanted to blend in. And, that’s exactly what I did.

While I do think a ‘new boob on board’ badge may have helped me avoid the elbows of those fighting for a bit of personal space, it was a fairly pleasant experience (as much as a commute across London at rush hour will ever be). It also reminded me that most people have so much to think about, that the potential plight of a stranger across the carriage really doesn’t register.

So, my advice to all you lovely ladies currently without lovely locks is dare to bare! Bald can be beautiful and pretty liberating. I shall leave you with the words of Larry David (slightly amended in itals): “Anyone can be confident with a full head of hair. But a confident bald man (or woman fighting cancer) – there’s your diamond in the rough.”

Breast cancer lesson number 81: The happiest people don’t necessarily have the best of everything; they just make the best of everything

Jogging (with a bit of walking) as I was around Greenwich Park this morning, I was reminded of a little bit of good that has come from the bad that is a cancer diagnosis.

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I may be missing a few lymph nodes, but in extracting them all down my right side, they also did me a rather nice favour. They took my sweat glands too. That means no matter how hot I get (admittedly there wasn’t a huge amount of sweating going on this morning), I will always feel as fresh as a daisy – albeit only on the right. And, before you ask, the left side doesn’t compensate by giving me a good drenching!

Ok, so it might not be a fair trade when you think of the destruction caused by the cancer itself. But, you won’t hear me complaining. In fact, there are quite a few things I like about my post-cancer body. So much so that I feel part of me should feel quite grateful.

While I may have to live with a hip-to-hip scar across my stomach, the flat result really is the tummy of my dreams (and the scar is shaped like a smile rather than a straight line). Now I just have to keep it that way!

The hair loss may be temporarily (although if my armpit gets a blasting from the radiotherapy that could spell an end to right side armpit growth too), but it certainly is low maintenance. The thought of having no leg hair (the last to go I hear even though I wish it were the first) is actually quite exciting and the only bits I don’t want to part with (now the hair is a distant memory) are my eyebrows and my eyelashes.

And, dare I say it, my man-made boob is pretty realistic. The only problem is, it is already growing (even though the rest of my body isn’t particularly), so I may have to have weigh up my options with the surgeon if little becomes large over the coming months. The natural left one just can’t keep up.

Most importantly, however, I have a newfound respect for my body and the bits that do (and don’t) work. In the park today I jogged further than I have in a decade and it felt good. Even something as insignificant as painting your nails feels like a treat, now I set aside time for it (and don’t apply it while trying to multitask and end up taking it all off again).

This period has taught me that if you want to help others and give back to the world, you must first help yourself.

I know cancer has the power to challenge my life again in the future. That’s why I’m going to give my body the time it deserves now, so it will always have the energy to fight back. 

Breast cancer lesson number 80: How to make the ordinary feel extraordinary

It started with Friday night wine. As a tradition to mark the beginning of a weekend together, it has a special place in my heart. That is, until chemo wrestled in on the action and stole away my tastebuds. Chemo has a skill of turning even a beautiful Cotes du Rhone into the most vinegary plonk imaginable. Trust me, it is not a party trick of which I am particularly fond and it certainly doesn’t do much to give you that Friday feeling.

I am, however, thankful to chemo the comfort-stealer for one thing. By targeting and eliminating life’s pleasures, it has provided me with the opportunity to enjoy them all again as if for the first time. Chemo turned a normal night into one of the best Friday nights ever because it decided to hand back my tastebuds (albeit temporarily) and with them my love of red wine. Every sip of that full-bodied beauty is now wonderful wine memory tucked away for me to draw on whenever the palette goes wonky again.

In lesson number 47 (click here for more), I wrote about the joys of rediscovering your ‘normal’ and the way in which something you’ve taken for granted for years can suddenly become exciting and beautiful once more. I hope that everyone gets the chance to do this (without the chemo drugs in tow), because it really is a source of great happiness.

Yesterday I took a day away from blogging and from cancer to soak up every moment of a typical bank holiday Saturday. And, you know what? It felt wonderful. The contents of my Saturday are not particularly blogworthy, but that’s the point. A breakfast of eggs in purgatory (if you haven’t had this amazing recipe, click here to head to my lovely friend Rachel’s blog for inspiration). A trip to the garden centre. Three hours of sorting and clearing in the garden. A glass of wine in the evening sunshine. A walk in the park and a lovely curry at home. Each one an ordinary moment that made me feel extraordinary. When digging out the composter with a trowel makes you smile, you know that you’ve started to see the world through different eyes.

As proof of our hard work, here’s Duncan in the garden trying out his top for our 10k run (it arrived yesterday). Quite why he felt the need to raise awareness for breast cancer in our garden was beyond me, but it was really nice to be able to spend some quality time together in the mud! (As an aside thank you so much to everyone who has given so generously so far in sponsorship for the run. I will thank you all individually over the next few months.)

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Duncan used a lovely gardening analogy when talking about the year so far over a very normal drink in Greenwich.  He likened cancer treatment to pruning a rose. Pruning is often brutal and can make a flower look messy and sad for a while. But, when pruned, a flower can come back stronger and more beautiful than ever before. He said there is no time to feel sad. Just time to take action and grow stronger. For a maths graduate, I thought that was pretty special. Will certainly make me remember that drink!

I know this feeling won’t last forever. But it is a feeling I want you to experience too. I want you to linger longer over those bluebells in the park. I want you to drink in the scent of spring on freshly-laundered clothes. I want you to read the back of a label of wine and try and find the delicate spices and vanilla (or have fun trying) in every sip. I want you to rediscover every normal aspect of your life and give it centre stage for just a moment. If the normal bits of life can bring you more happiness, just imagine what the surprises and special moments will bring?

May today be an ordinary day that makes you feel extraordinary.