We’re Just Ordinary People

I’ve been thinking about an article I read this week, written by a breast cancer survivor. She questioned the idea that “ordinary living takes ordinary courage” and whether this applies to those of us who have come out of treatment and are expected to go back to our ‘normal’ lives again.

When people now ask how I’m doing, the answer is that I’m feeling much better. Not just better until my next treatment cycle, but every week I’m getting my energy back and my thoughts are clearer.

I don’t have to go to the hospital every morning, like I did during radiotherapy. Just once every three weeks for a quick injection in my thigh – easy stuff.

My portacath has been removed, so I now have just a small scar on my chest rather than a very strange lump under my skin and a constant reminder of my chemotherapy.

I’ve started on my hormone-blocking tablets, which I take each morning with a calcium and vitamin D supplement as well as my thyroxine (and yes, I have bought one of those plastic tablet boxes so I remember what to take and when!).

My hair is definitely growing back and this weekend I successfully coloured it all dark brown. So when I’m out and about, no small children ask “Mummy, why does that lady have no hair?” before being dragged very quickly away (honestly, happened too many times this year).

I’ve gone back to work – just two afternoons a week until January but it’s enough for me at the moment. I’ve gone back to exercise – just Pilates and swimming at the moment but those muddy fields and military fitness training classes beckon again in the not too distant future.

As I put my 2015 calendar up on the kitchen wall, I can begin to plan again. Weekends away, holidays, nights out, and mad sports challenge events – I’ve even signed up for a 20-mile trail run up Snowdon next September.

I’m starting to live an ordinary life again. One where I’m free to make choices that aren’t influenced by the regime or effects of horrible treatments. It feels raw, it feels scary, it feels unpredictable.

I can tell you that living an ordinary life again most definitely takes extraordinary courage.

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Objects On The Horizon May Be Closer Than You Think

When I was first diagnosed with cancer and frantically seeking answers, treatments and explanations, I was advised to take this journey at a slower place. I was told to take each step at a time and not look too far ahead – not because there wasn’t a future for me, but because there was so much to learn and understand that it would be better to take little steps along the way – focus on the surgery and recovery, then the chemo, then the radiotherapy, etc. It would be too much to see the whole picture, much better to focus on what was happening just at that moment.

It was good advice but there were a few goals on the horizon that I needed to also keep an eye on if I was to remember that the dark and difficult days were temporary. There is my son’s wedding next June, a wonderful holiday over New Year, getting my fitness back and returning to teaching.

Just a month after finishing my last chemo treatment I can honestly say that those 18 weeks of drug-induced hell are now definitely seen through the rear-view mirror. Even though I still have side-effects (the latest one being blocked tear ducts, so please don’t think I’m being emotionally unstable when we meet – I can’t help my eyes from watering all the time!) I can feel the horrendous ‘chemo fog’ lifting from my thoughts and I’m much more like the old me – which may not be a good thing but it makes me very happy!

At the moment I’m over half way through the radiotherapy, so the end of this is also in sight. So far, my skin is holding out and I’ve not experienced too much soreness, although the tiredness is something else. I’m fine if I keep busy but the moment I sit down, the sleep fairies take over and a quick ‘Nana Nap’ has become an integral part of my day. The only other side effect is the swelling that has happened to my affected boob (I was always going to tell this journey as it is!) – and last week I did mention to the hospital staff that I now have one boob that belongs to a 52 year old and another that feels as if it belongs to an 18 year old! Please insert your own joke here…..!

So as I emerge from these treatments I also want to look like ‘me’ again – experiments have included a rather disastrous run-in with some red hair dye (it only coloured the swathe of fluffy hair down the centre of my head!) , an afternoon of make-up lessons with other women affected by cancer treatments (not sure why they included mascara in the goodie bag when the group of us had about 17 eyelashes between us) and a couple of attempts at swimming and running, which made me realise that I need to leave it another week or two before pulling on my trainers again.

But Monday is a BIG day. It’s my first time back teaching again. Going back to work has been one of those goals on my horizon that I’ve focused on when everything around me has seemed unstable. Going back to work would mean I was through the horrible part of the treatments. Going back to work would mean that I was on the road to recovery. Going back to work would mean I was Suzanne again. Going back to work would mean getting on with my life.

Think it’s time to get my Big Girl Knickers on again.

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Radio Gaga(brain)

Two of my 15 radiotherapy sessions done and have to say that they are even more uneventful than the actual chemotherapy sessions. I arrive at 8.30am, change into this nifty little top that has Velcro on the shoulder (so they can expose just your affected boob!), get positioned correctly on the table and then left alone whilst this big X-ray type machine moves to one side, makes an alarm sound for about 20 seconds before moving to the other side and making the noise for another 20 seconds. Then the staff come back in, I get dressed and I’m back in the car for 8.45!

I’m being good and moisturising my skin at least three times a day as well as trying to drink two litres of water – together these will help reduce any skin soreness over the coming weeks and also help combat tiredness too. People tell me that this is so much easier than the chemo, so here’s hoping! Still, when you’re left alone in a room with one boob out and trying to stay very, very still you have a whole range of thoughts and ideas going through your head….

  • Where’s the camera so they can see me?
  • I’m glad I wore socks – it’s bloody freezing in here!
  • Oh no, if it’s cold then that means ….
  • Ah well, quite sure they’ve seen that reaction plenty of times before!
  • I wonder how old I’ll be when I die?
  • Have they lined this up with my little marker tattoo rather than a freckle?
  • What if the cancer comes back?
  • I’ve drunk too much water – I need the loo!
  • I miss my mum
  • I wonder how much it would hurt if this machine fell on you
  • In two weeks I’ll be teaching again
  • I hope my hair has grown at the front by then
  • I hope my chemo brain has gone by then
  • If I stare at the beam, would it make me go blind?
  • I’m bored

I have a review appointment with my oncologist tomorrow to discuss my treatment plan for the next 12 months – let’s hope that his thoughts are a little more focused!

Moving On

This is what 18 weeks of chemotherapy looks like.

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What you see:

• Long, curly hair – gone (although little bits are starting to grow back!)

• Eyebrows that have thinned out

• Eyelashes that are few and far between

• Weight gain of about 20lbs

• Skin not looking as bright as it once did

• A lump where my Portacath is (the ‘bump’ in my chest wall, where they take blood and give me chemo and other drugs)

What you won’t see:

• The number of times I’ve cried when frightened, tired, weak or sick

• The number of times I’ve laughed over inappropriate jokes

• The huge shift in my thinking about not stressing over small stuff

• The love I have for my totally amazing family and friends – Team Suzanne!

• My plans for the future

• An acceptance that these may not turn out as I think they might!

• The determination to get fit and healthy again

• The experience of facing my worst fears

• The realisation that you don’t have to conquer them, sometimes you just have to endure them

• The most unbelievable gratitude for the messages, texts, cards and comments from everyone who has been in touch, just to say you’re thinking of me and wishing me well. Trust me, they have each made a huge impact and been so very much appreciated.

Tomorrow is my last chemo treatment; at the end of the month I start my radiotherapy for three weeks and also my daily anti-oestrogen medication for at least five years. The Herceptin injections will continue once every three weeks until next August.

Regular updates from the front line will be provided!

The Down Side Of Up

Another cycle done, another little bit closer to the finish line for this part of my treatment.

Physically it was very tiring, lots of time spent trying to sleep but only succumbing to some very weird and worrying dreams that didn’t leave me feeling particularly rested. Emotionally, this cycle has hit me like a huge truck and last week my head went to some very dark and lonely places. No matter who was around me (and my family and friends have been wonderful) I felt very alone. Worse, I got to the point where I started to believe that if this was my quality of life then where was the value in continuing with the treatment10394578_10151985713731191_4112215178430647358_n?

This despondency actually only lasted three days and when I woke on Tuesday morning there was relief that I started to feel a lot more like Suzanne again. And so I’ve been thinking a great deal about why I should have got so low (very unlike me) and why I couldn’t recognise that I was now less than six weeks away from finishing this hell.

And I think the answer is this – when you’re ill or injured, no matter how painful or sore or ghastly you might be feeling you know that you will get better. Sometimes it may take a few days and sometimes it’s longer but inside you know that it will end and you’ll be OK. With chemo, the bad days are actually quite few and once the drugs are out of your system your body begins to heal and recover. So you’re a good patient and do all the right things – rest, drink fluids, eat well, have a positive attitude – and you get your energies back. Only to have them pump you full of poison all over again. And then again. And again….you starting to understand?

So when someone going through chemo says they can’t do another cycle there is no point in reminding them that the bad days only last for a long weekend. What they’re saying is that they don’t want to get better in order to get poorly again. That somehow the bad days when you have hope of getting better are so much easier than the good days when you’re terrified of how poorly you’re going to be again.

I know that I’ve done well so far.

I know that I have only 5 weeks left until my last chemo.

I know that I’m lucky that I don’t have cancer any more.

I know this was my decision to have the treatment.

I know that I need to do this and then the odds of growing old disgracefully are very high.

I know that it’s the steroids that make me feel down.

But I’ve had enough.

October 9th can’t come too soon.

 

It’s All About The Hair

You would expect that after a diagnosis of killer boobies, the focus of other people’s attention would be very much on your chest area. The last few weeks have shown quite clearly that it’s all about your hair.

Now before I start, let me clarify that I’m talking about the mop that previously covered my head. The chemotherapy drugs have been doing their job and destroyed just about every hair follicle from my neck down, giving me a fabulous result that years of waxing, plucking and laser treatment never quite achieved! However at the time of writing I still have my eyelashes and a fairly good attempt at eyebrows, as well as a reasonable smattering of die-hard bristles across my scalp to help minimise the shine of my skin.

After spending a small fortune on wigs and jaunty scarves, two weeks ago I found myself getting increasingly frustrated by the preoccupation that comes with making sure that a) knots are secure and b) there are no strange areas of scalp exposed whilst out and about. Following some very wise words from one daughter (“Mum, you’ve had cancer and nothing is as scary as that”) and a reality check from another daughter (“Mum, I’m not embarrassed to be seen out with you. It’s your behaviour that is embarrassing”) I decided to go commando and ditch the head covering on a day to day basis. It’s been an interesting experience…

…firstly, not many people seemed to actually be bothered by it! In a society that is obsessed by how we look, I think that actually our appearance needs to be rather shocking in order to get noticed. Beyond the honest looks of confusion by young children, I’ve not experienced anyone laughing or mocking or any of the other reactions I had feared.

The social filters of adults are a different matter. There was the checkout lady at Tescos who asked if I was doing ‘it’ for charity – hmm, yes sponsored walks are so last year, thought I’d get cancer instead – would you like the link to my Justgiving page? Thinking of having my left leg amputated next year just to make sure I hit my target! Undaunted she then proceeded to ask me where my cancer was and to regale with the story of how her friend was dying from this illness. So much easier if she would have stuck to the corporate script and asked me if I needed carrier bags or help with the packing.

Then last week whilst out shopping I was approached by an older lady who was dressed straight out of a WI fashion magazine and asked “Excuse me dear – are you struggling with cancer?” Now I did take a moment before responding because this conversation could have gone in many different ways, so I smiled and said that I was having chemotherapy at the moment – and it seems that her daughter had undergone similar treatment last year and had opted to ditch the headscarves, stating that she wasn’t going to hide from how the cancer or its treatment had changed her. Seems that she’s doing very well now, and this lovely lady simply wanted to applaud my decision too!

Finally today I was in a small queue, waiting to pay for some baking goods and the woman in front was loudly telling the staff about how she was taking part in the Macmillan charity head shave at the end of the month as her friend had recently started chemotherapy for breast cancer and lost her hair so she wanted to “be the same as her.” Yes, I was stood there with my patchy scalp on show, dressed in tight jeans and high heels so clearly not electing for a hairstyle that matched a personal fashion sense. On and on she went, all about how emotional she felt about losing her hair, how she just wanted to feel like her friend was feeling at the moment. I was honestly lost for words – would it have been rude to say that losing her hair wouldn’t even get her close to what her friend was probably going through right now? That letting your GHDs gather dust was not the same as spending days and days trying to get endless nausea under control? That the savings on shampoo and conditioner did not compensate for the sore mouth you get after your saliva turns to slime and the ulcers that appear in your cheeks and under your tongue? That the benefits of a ‘wash and go’ head were lost when the fatigue that regularly descends makes it virtually impossible to even stand up at times?

Losing my hair is such a small part of this journey and yet it’s been what the majority of people have asked me about or commented on, from being told that I’m very brave (no I’m not, I still get scared about the future) to the fact that I’m lucky because I have a great shape to my scalp (another body part for women to worry about!).

And it’s all about perspective – when I go to Christies for my treatment I suspect there may be patients who are envious of my final few follicles!

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Feeling the Fear – But Doing It Anyway

According to Wikipedia, endurance is explained as “the ability to exert and remain active for a long period of time, as well as the ability to resist, withstand, recover from, and have immunity to trauma, wounds, or fatigue.”

Kind of sums up the last 10 days.

Chemo session number 2 was uneventful, went home feeling tired but relieved. However within a couple of hours the nausea was building so I hit the anti-sickness meds hard but nothing was working. By early evening I was in a pretty bad way but the out of hours GP said it would be six hours before they could get to me with an injection…so grateful for a medical friend who quickly came round to administer a shot. However that too also couldn’t stop the sickness, so 10pm found me sobbing on the phone to the Chemo Hotline (yep!) at the Christie, who promised me that if I came in they would be able to help. True to their word, they gave me an injection which finally did the trick.

As I’ve said before, nausea and needles are the two medical procedures that I fear the most and clearly someone ‘up there’ was setting me a challenge…my Portacath also decided not to play so I ended up with an IV cannula in my elbow for saline and another one under the skin of my arm for the anti-sickness drugs. The next two days passed in a bit of a blur – I remember desperately trying to stay awake when family visited but ultimately failing miserably – until I came home on Saturday evening, still feeling sick but able to keep small amounts of food and fluid down.

By Wednesday I started to feel back to being me again, more tired than usual but able to focus on conversations and stay awake for more than a few hours. Now I’m in my two good weeks so trying to balance the need for rest and recovery with the urge to make the most of every day.

The oncologist called to say they had reviewed my treatment plan and instead of a further dose of what clearly makes me very poorly, I’m now switching to the next chemo drug early. I’ll need four cycles of this one (rather than the three, originally planned) but I shouldn’t be as sick. It also means I can start the Herceptin therapy a little earlier – and that’s the one I need to help stop me getting another tumour. The downside is that I’ll probably get bone pain (which can be managed to a degree with painkillers) and I’ll be very tired as this one tends to wipe out a good number of both red and white blood cells. Chemo – the gift that just keeps on giving!

So why the affinity with the description of endurance? Because the one thing that has kept me focused on getting through everything so far since my diagnosis has been the belief that all of this is temporary. That at some point in the future I won’t have to make every decision based around my cancer or treatment. That I’ll be able to arrange to have a meal out with friends without first checking where I’ll be in my treatment cycle. That I’ll be able to chose what to wear without thinking if I have a matching scarf to cover my head with. That I’ll be able to book a holiday without wondering if I’ll be able to get travel insurance by then. That my blog will be about something else than this.

I still fear nausea, but I know that when it gets to the point where I’m retching non-stop the hospital will give me an injection to control it. I still get anxious at the thought of injections, but sometimes they bring relief and it’s worth a few moments of hurt to get to a better place.

These last 10 days I’ve learnt to resist the urge to say “enough, I can’t do this any more.” I’ve been able to withstand my body responding to highly toxic drugs in ways that make me very upset. I’ve seen how I do recover and come back to those who love me.

And I won’t let my fears decide my fate.733a4c3ca3781fc6282fa5f53b166729

Turning The Corner

You have no idea how good it is to be able to eat again.

We often talk about being really hungry but after nearly five days of not eating, trust me the sheer pleasure of actually feeling hungry and being able to satisfy that need to eat is the best thing to have happened to me in days.

My first cycle of chemo has now been undertaken, not quite ‘through it’ yet as my white blood cells will drop in number in the next week as a response but hopefully they will recover well so that I can be subjected to this fun all over again.

The scariest part of chemo is not knowing how your body is going to respond to the drugs – so I sat there on Thursday in an anxious state as the lovely nurse injected two large syringes of pink stuff (the one that causes your hair to fall out) and one large syringe of clear stuff (that gives you an itchy nose). An hour later it was time to go home and I slept for 10 hours, simply from the relief of having got through the day.

Friday was OK – some nausea but manageable with the four sets of drugs I had been sent home with. In the afternoon Jeremy had the pleasure of giving me an injection in my thigh, which would help stimulate my bone marrow over the following week to counteract the immunity drop caused by the chemo. Afterwards I slept for another six hours but woke feeling really poorly – my temperature had dropped and clearly all was not as it should be. A midnight trip to the Christie and overnight stay with antibiotics meant that Saturday was a little better, but I was still feeling very sick and unable to eat.

Sunday and Monday came around with not much improvement in the sickness but a huge invite for one to The Pity Party that comes after the steroids finish. All I can say is that they were dark days and challenged me more than I had ever thought I would – as someone who thinks that she has enough mental strength to get through almost anything, those days have made me realise that it’s not about being strong enough or being determined enough, it’s just about being.

Monday afternoon my rescue came in the form of another anti-sickness medicine (my others had all run out) and it was wonderful – a strange tripping experience as I was definitely not functioning normally and do have recollections of wonderful feelings of calmness and contentment – but I had cheese and biscuits for tea and they were the most delicious foods ever! Followed by a decent night’s sleep and woke in the morning to actually feeling hungry and being able to eat some toast, which was heaven.

A trip to the supermarket to stock the fridge again (not driving yet, still feel a bit spaced out) and catching up on e-mails, messages etc. I doubt I’ll be out for a run again soon but I’m certainly starting to feel a bit more like me again.

This is going to be one hell of a ride but it’s about taking the help you need – whether that’s a super-strong anti-sickness tablet or simply saying to a friend “I can’t do this” – I need to remember that this is the journey, not the destination.

 

 

Time To Rock and Roll

Right, so today is D-Day – or C-Day to be more precise. It’s the first of my six chemo sessions (there’s a 3 week break between each one) and I guess I’m as ready as I’ll ever be. The last couple of weeks have been rather surreal and I’ve been kept very busy putting Team Suzanne together.

I’ve devised a list of rules that we all have to abide by over the next 18 weeks…

  • There will be times when I need to have a good cry and you have to let me. Don’t tell me to be strong or to be positive, just supply me with tissues.
  • There will be times when I try to act tougher than I really am – play the game and keep up the pretence, it’s how I’m coping.
  • There will be times when I’m actually rocking this shit, tell me how great I am!
  • Please keep in touch with me – a text, a FB message, a phone call, an e-mail. You’re not mithering me and it’s good to know that even though I might be off the social radar for a short while, you include me.
  • Inappropriate jokes are essential, the more outrageous the better. Make me cry with laughter – like the friend last week when I was moaning about how old I’m going to look with no hair, no eyebrows, no eye lashes – until she pointed out that at least my ‘foof’ will only look 6 years old! Priceless.
  • Please don’t get offended that I can’t hug you – my immunity will be shot to pieces and I need to keep myself well. If you have a sniffle or a cough then please meet up with me another time – I won’t be upset and I won’t get poorly.
  • Chocolate makes everything better.
  • As do diamonds (only joking – apart from Jeremy!)
  • I need suggestions for Netflix – already lined up ‘Orange is the new black’ and ‘House of Cards’ – so all ideas welcome.

Time to get my Big Girl Knickers on.

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The Good Side Of Bad

I hadn’t realised how much I use words – and writing – as an outlet for thoughts and feelings until 5 weeks ago when my children asked me not to blog about what was happening regarding my cancer diagnosis. The shock, numbness and denial we were all experiencing in those early days may have provided a rich source of content but it was right that they weren’t made public then. Despite what some people think, I don’t live my life via Facebook and other social media and therefore have been rather selective about what I share and how I do so.

As I move into the next stage of this unenviable journey, I’ve been forced to think about how I’m going to stay focused. For me, words have always been how I’ve expressed myself. I’ve often joked that I don’t fight with my fists but with my mouth! You never need worry that in an angry moment I’ll give you a nasty thump, but you may find yourself wounded with a very unkind (but probably spot-on!) observation of your worth to me.

So to balance the need for me to express my thoughts with the sensible approach to not always sharing everything right here, right now I’m doubling up! I’m keeping a private journal of this journey where I can safely offload all my thoughts – both happy and scared – without fear of upsetting anyone I love, yet some of the words may well find their way into this blog if they serve a purpose. I’m still finding humour in the most challenging of situations and sometimes those stories need to be shared with friends!

Cancer and chemo humour is all about perspective – how things that might be important to one person have little relevance to another. Such as the day before I was due for my surgery and the technician taking my blood shouted at me for moving my arm just as she inserted the needle, which she told me would result in me getting a bruise inside my elbow. She couldn’t understand why I found that funny until I explained that the following day I was due to have a chunk of my breast and armpit removed so a small bruise wasn’t too much of a problem. She thought quietly for a moment and then simply said “Fair enough!”

Or the amazing anaesthetist who recognised just how my mind works when I apologised for using the ‘F’ word when she inserted the canula in my hand before sending me off to sleep. Her response was she loved to use that word herself and so I drifted off to her asking the team for all the f***ing drips and drugs!

At the moment I’m in a bit of a lull – recovering well from the surgery and relieved to be cancer-free but at the same time busy planning for the chemo, which will hopefully start in less than two weeks. And whilst needles and nausea are my two biggest fears when it comes to medical problems my focus at the moment is getting through the next few months when I won’t be full of energy and being the strong person that everyone thinks I am.

I have genuinely been overwhelmed with the love and support shown over these last few weeks, the belief that other people have that I’m made of strong enough stuff to get through the treatment and then get on with my life. I’ve also been moved to tears by the kindness of strangers – when cancelling holidays and events that I’d signed up for I’ve received really personal e-mails back, sharing their own experiences of loved ones with breast cancer. I’m a new member of the teaching team at MMU and yet there has been nothing but encouragement and happy rescheduling.

I’ve been busy putting Team Suzanne together – the family and friends who will share the days when I’m feeling steroid-induced euphoria as well as the times when I just want to crawl under my duvet and cry. Trust me, you will all be called upon at some point!

Being positive will not cure me – that will be down to the scary combination of lethal drugs that will be pumping through my blood later this month. Being strong won’t happen all the time – I’m human, I’m scared. But writing it all down will be how I manage to get through it and so I want to thank you for being by my side. Whether you’re simply offering love, prayers and thoughts or being my provider of food, endless medical advice or psychological help (also known – by one of my friends – as ‘just telling you to stop thinking too much and get on with it’) then please know that my gratitude goes beyond words.

And that doesn’t happen too often!

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