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Dear Fiona…

I started writing these letters a few days after finding a lump in my  breast on the 19th September 2015.

11 days later I had a diagnosis of cancer and the carousel of treatment began. Surgery, chemo and radiotherapy.

My active treatment finished in June 2016. For the next 6 months I was kept afloat by the euphoria of finishing treatment. The next period of time was marked by confusion, repressed sadness, anger and eventually the beginning of acceptance and recovery.

Later that year having seen a psychologist for about a year I began what I believe to be the final stage in my recovery -weight loss.

I have now lost 2 stone which takes me to a healthy weight and one I feel happy with. I feel comfortable in my own skin. I’m getting to know the stranger in the mirror.

And who is she? Well she is neither sad nor ecstatic. She is still in essence me although changed in so many ways.

So there are the obvious physical changes. They are not too bad. I am lucky.

Emotionally- I understand that resilience comes from letting pain in…not trying to fight it or ignore it or hide from it. You have to surrender to it.

Mentally- I have learned that I am strong. But strength comes from adapting not resisting.

I am more compassionate but also less. I have no time for ridiculous things. life is short and the clock is still ticking.

I woke up this morning feeling full of hope and happy. Looking forward to getting on with my day and full of plans. I think this might be as good as it gets and that would be just fine.

My risk of recurrence is still as high as it was post treatment. But my fear of it is much reduced.

So I think this is finally it, where I sign off.

Yours sincerely

Fiona

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Carry On

” Some things cannot be fixed. They can only be carried” – Megan Devine

This is the most true statement I have ever read in relation to grief and how it changes you.

I am lucky because my loss was not final. Since my diagnosis I have lived two years and I continue to give the appearance of health. Perhaps that appearance will be my reality. Time will provide those answers.

Yesterday I went for a walk early in the morning. The sun was rising in the sky and promised an unusually mild and bright February morning. Everything around me seemed to be preparing to spring back to life after a long and cold winter. I could feel the sun warming my back as it projected a long tall silhouette of my frame. A giant of ridiculous proportions. It made me smile.

I wrote previously of feeling hopeful but it has felt like a glimmer of something. Not quite concrete enough for me to carry forward. But yesterday in the warmth of a spring morning I did feel full of hope. Heartened by the frozen things around me beginning to thaw. I felt hopeful and I realised that hope doesn’t have to be about expectation. It can simply be a feeling and a way of being. It’s the way I want to be and I think it is the way I was, until I got cancer.

I wrote this-

 

Awakenings.

 

February,

And the sun is rising.

Warm at my back

It projects-

A flickering silhouette.

A giant

With impossible legs.

 

Beneath my feet

The ground yields.

A surprising thaw.

Somewhere-

An invisible bird

Trills.

 

Something stirs-

A consciousness

A memory

An eternal spring-

Hope-

without expectation.

 

And it rises

Warm at my back

Projecting

With flickering lights-

The possibility…

And it grows.

 

So I will carry my grief forward. But I will also carry hope, without expectation.

I feel imbued by that. As if something has lain dormant within me for the longest time and has finally begun to stir.

I’m going to nurture it. Feed it with love and light. And this is how I will carry on.

 

 

 

Definitions

imageAlways when I write a blog post I want it to be the last one. Sometimes I have thought it will be the last post and that this will reflect the ending. I think I am finally coming to an understanding that this experience is not about endings but instead new directions.

I have left some things behind. Burdens are by their nature heavy and I travel more lightly now. The process of time and reflection has enabled me to do this and these joint forces have slowly changed the shape of my thinking.

Falling into the category of burdens too heavy to bear are the following things.

Guilt. The feelings I had of causing my cancer, potentially ruining my children’s lives and being the source of distress to my family, husband and friends I have now left behind. I have also let go of feelings of guilt for not being able to sustain lifestyle changes after treatment ceased. I do want to lose weight but I am more likely to experience success by engaging in self-compassion than by using cancer as a rod for my own back. I have suffered enough. That is over.

Fear. I have stopped breathing deeply first thing in the morning to check for changes in my lungs. Tumours that I believed were there but just not big enough to make their presence felt…yet. When I breathe deeply now it is with gratitude for my life. My precious life.

Repression. I am done with forced positivity. I face challenges in my life just as every one does. I will continue to accept my emotional states as they are, authentically. I will scrutinise my feelings and honour my pain. Being positive and strong are great things to be but nobody can be these at all times.

Anger. I am no longer angry. I think I could handle unreasonable people now without experiencing rage that is related to cancer. I am a fiery person though….the most I can hope for is a return to previous levels. I am never going to be ‘Zen’.

Distress. I no longer feel overwhelmed by emotion. At times I felt engulfed but those feelings have subsided. They have been replaced by feelings of calm and finally, acceptance.

Today I attended a celebration for the life of a 15 year old daughter of a friend. She died from sarcoma, a rare type of cancer. She lived her life to the full from her diagnosis aged 10 and to well beyond her terminal diagnosis. Today marked her passing from this life but her family and friends will hold her in their hearts forever.  Her amazing strong family were able to celebrate her life. She got 15 years and she filled it. What other possible reminder could we need to be grateful for our lives and live them as fully as possible. It should be enough.

Finally I feel that as I enter my 3 year post diagnosis, that I can see my way forward. That I can live my life with acceptance of the challenges that have been but not be dragged down by them.

And that is my hope for my future. I hope… and think about the future and that is probably the most significant change I have experienced.

You can’t control what happens to you in your life but you can make choices about how you handle yourself. Those choices will define you. Choose well.

2 years.

Have you ever peered over the side of a cliff and wondered what it would be like to fall over the side and down onto the rocks below? That’s how getting a cancer diagnosis felt for me, like falling off a cliff. You don’t necessarily expect to survive such a thing but after the crash I picked up the fractured parts and attempted to reassemble them.

In the beginning I didn’t recognise this ruined version of myself. I didn’t feel fixed. In my timeline there are only things that happened before cancer and things that happened after. It created a chasm between what was and what wasn’t, what could be and what would never be again.

In the first few months after treatment I was still recovering from the physical side effects of chemo.  I was however, ridiculously happy to be alive which proved to be an ameliorating force. I was tuned into the beautiful things in the world and unwilling to put up with anything that was not contributing to my wellbeing. I resigned from my job. I was too physically tired and too mentally exhausted to handle all the baggage that comes with teaching.

That was a really difficult time but it was also the beginning of some major changes for me. Out of the pain, suffering and fear that I experienced I have learned certain truths about my situation. The desire to survive forced me to adapt.

Some of the changes have been positive but much of it continues to be difficult. I have had to accept that I can’t make difficult things disappear. After completing treatment the very last thing that I wanted to hear was that things might continue to be difficult. I refused to accept this possibility. My life was going to be bloody brilliant thanks very much and cancer could just f*&k right off.

But both these things are true. My life is brilliant but it’s also quite difficult at times. That’s true for everyone but the cancer experience may diverge in that what is difficult becomes invisible sometimes even to the person who is experiencing it.

To explain; after I had cancer I didn’t generally talk much about how it felt because I had done that while ill and I wanted to move forward. Being told to stay strong and be positive had been irksome during that time but who wants to be weak and negative? So you crack on.

Tables or desks need to be moved and you don’t want to say I shouldn’t be doing that but you have to speak because lifting is a no-no for risk of lymphedema after the removal of your lymph nodes due to cancer surgery. The risk is real but you look healthy.

Short term plans are often overturned by feeling that you can’t cope. Making long term plans is a hurdle. I have forced myself to do certain things which had been curtailed by thinking ‘what if I die?’ the risk is real but you look healthy.

The fatigue I feel continues to be beyond anything I’ve experienced before but you look normal, perhaps even healthy. But you are never really quite sure that you are healthy.

Finally, ‘Time’ that curer of all ills. The 3 year point post cancer, where you have hair and you can move your arms again and walk and swim coincides with the peak time for recurrence of the cancer to present as a secondary diagnosis. It’s scary and it sucks.  Sometimes you feel like you are back on the edge of that cliff, teetering.

I am writing this because it’s difficult to say it and it’s a bit of a buzz kill. Most of the time I just want to have a laugh and get on with my life but it would be the biggest lie to say that it is always easy to do that.

I am approaching the 2 year anniversary of my diagnosis of cancer- the ultimate kill-joy and yet here am- often joyful, sometimes sad but always grateful that I am still here to figure out my way through this bit.

Jigsaw

Yesterday I chose to see the psychologist for one last session. In the months after completing my treatment I had begun to find my own behaviour confusing. It was as if my life had become a puzzle.

I had repressed feelings about my cancer in various ways from diagnosis onwards. I realise that while grieving I experienced many different feelings but the over-riding emotion that permeated all the others was the feeling of guilt.

Guilt for having to tell my children I had cancer, guilt for what I might have passed on to them genetically or environmentally. Guilt while going through treatment for not being able to look after my children or be the mother that I wanted to be. Guilt that I might ultimately, despite everything die.

Now obviously I did not set out to get cancer and it’s only with a bit of distance from that experience that I can see how significant that feeling was. Once I’d completed treatment I channelled all that guilt into losing weight, here was the one thing I could do to improve my chances of preventing recurrence. Instead of that being a positive agent for change it became a rod for my own back. Something to berate myself with and something which if I slipped up or couldn’t control would lead to further feelings of guilt. These feelings were more intense too because I knew it was my responsibility and that made it worse.

I don’t know, and I will never know if my diet was a significant factor in developing cancer in my body.  But I do know that I feel better physically and emotionally when I’m managing my diet better. That’s what I want to do and while it’s always a challenge for me it is not insurmountable.

I deserve to be happy. I deserve to be healthy and guilt really does not play a useful part in any of this.

So I will persist, I will make plans and I will do the work that is required to get my life back. This will require patience and self compassion. But this has to be my goal now and it is very important to me to achieve it. Nothing worth having comes easy and I know this won’t be easy but the way I am living right now is actually really hard anyway. It’s not a difficult choice to make even though sticking with it may well be.

I feel as if the pieces of the jigsaw have fallen into place and now the rest is up to me and that’s ok. It’s been hard and this time since completing treatment especially so because my expectations for myself were so unreasonably high.

I always joke that the real secret to happiness is low expectations but in all honestly I think that managing my expectations may well be instrumental to navigating my way through this next bit. So endurance rather than optimism the trait that got me through cancer may well be the trait that I’m going to rely on for the next phase.

I will try and I will do my best, knowing that sometimes my best will be not the best…because I’m human and susceptible to human temptations and human mistakes.

Any other interpretation is not helpful and counter-productive.

So what happens next is that I need to learn to treat myself with encouragement, kindness and compassion. Everyone deserves that and this is something that I can and should take responsibility for. Let’s begin.

The Light Within

When I was going through treatment for Breast Cancer the very last thing I wanted to hear was that things might continue to be difficult ….albeit in a different way, once treatment concluded.

I so did not want to think this that I refused to accept it as a possibility. This route was not for me. Wasting my precious time with worry? No. I was with sheer determination going to make my life nothing short of fucking fantastic.

In the first 6 months after treatment I made a pretty good stab at fucking fantastic. I lost a stone in weight, returned to swimming, took up yoga, returned to work, went to New York with my family….Carpe Diem and all that.

But around about this time the wheels starting coming off the wagon. It’s complicated but I suppose the first stumbling block was work.

I have worked part-time as a teacher since having my children and it’s always been a balancing act between, work, parenting, managing activities for the kids, preparing healthy food, keeping up with household tasks and fitting in exercise for myself. When you write all that down it’s easy to see why. It’s always been hard and I manage it myself during the week as my husband works away.

It’s always been hard but after cancer treatment it was just so tough. My body ached, my legs would swell up at the end of my working day which was usually just the continuation of my parenting day. Six months after chemo I was sitting at 9pm on my sofa after a long, long, non-stop day and I was crying my eyes out and as miserable as hell. I felt like I got through treatment for this? To feel like this? And I knew I could not continue like that.

I resigned from my job. It was suggested to me that perhaps I should go off sick but I wouldn’t hear of it….after all I didn’t have cancer anymore…I’d been off work , for 9 months, I wasn’t sick and I didn’t want to be signed off as sick.

The problem was (and with hindsight I can see it) …..I was sick. I was still feeling the physical after effects of chemo but I was also sick in a different way and not one that I was able to recognise largely because I was in total denial of it.

I’ve always been healthy in a kind of ruddy strong way. Rarely ill and hardly ever off work. I do know that’s luck not good management. Getting a cancer diagnosis took any feelings of control over my health I might have had and obliterated them.

All the swimming and walking… the eating your 5 a day, eating a proper breakfast …things I did because I tried to be a healthy person. Not only was I not a healthy person but I might actually be a person who was dying of cancer. My eating habits quickly deteriorated and I fell easily into my old groove of self-destructive behaviours.

Getting through treatment was such a massive challenge physically and emotionally that it didn’t leave room for any other feelings. Finishing chemo was the mountain that I had to climb. I hauled my weakened, exhausted, damaged body up to the top and the view was great up there for a while but the descent presented a different set of problems.

Grief. Shock, denial, pain, guilt, anger, bargaining, depression and acceptance, this is the grieving process and it’s not a linear thing. I felt shock, pain, grief in the early days of my diagnosis. But the other elements did not really emerge until after the shine had faded from concluding my treatment.

Recently I have started to feel that perhaps there is light at the end if the tunnel but perhaps that is not quite correct. Perhaps the light has to appear from within me not without. The light is a consequence of acceptance of what has been and what may be.

I can’t go back and I don’t want to. What I want to do is reconstruct. To rebuild and reclaim myself. I feel hopeful that I can. I have replaced feelings of guilt with self-compassion. But I need to fuel the drive to improve my life. It is after all…my life.

I can’t control timescales. I don’t know if my life will be long or short but the responsibility for making it fucking fantastic is still mine.

 

 

 

The Tunnel

The Light at the End

It’s been almost 18 months since I found the lump in my breast that statistically was unlikely to be cancer but unfortunately was.

I wrote about each step in the process that followed, initially to keep my mind trained on what was happening now and what would happen next. One step, then the next, doing that got me through treatment and beyond for a while, until things got difficult.

I promised myself that after treatment I would not allow cancer to have more of my life than it had already claimed. I promised myself that I would do what needed to be done to reduce my risk of recurrence.

This involved doing 3 things. Firstly, losing weight and maintaining that. Secondly, practicing yoga and finally participating in a survivor group.

For the first 6 months after treatment I was doing all these things. I had returned to work but 6 months after chemo my body was still suffering and work became really tough. I was exhausted and in physical distress. I resigned from the job that I had been doing for the last 4 years. A job I was good at and had enjoyed but I wasn’t coping and I felt the only option for me was to resign. I started a new job shortly after and as the months passed I felt much better physically but the new job did not turn out as I had hoped and I found myself working longer hours than I had previously.

This in turn resulted in a struggle to lose weight and the yoga ceased also. I felt like a total disaster. Not only had I failed in all the promises I had made to myself but I had introduced a stressful job into my life leading to more pressure.

I started to see a psychologist at my local cancer centre and I am so glad that I did.

She could see that I was stuck in my recovery and miserable. She could see that my thinking took me round and round in circles like a water eddy caught in a river bank. She could see that I would occasionally get emotional while talking about my experience then shut down that emotion and try to dismiss it or rationalise it.

It took about 3 months but finally I realised that the job I was doing was the cause of unnecessary stress and once more… I resigned. I felt nothing but relief. I have been making myself do things, difficult things in order to get back to ‘normal’ life. I think I have finally realised that my life is different now and that no good will come from denying that fact.

Accepting that fact does not mean I am living a life defined by cancer, it means that I decide how my life is going to be and I make that decision based on the realities. Therefore it makes no sense to working longer hours when fatigue is still a problem for me.

I have been in a dark place, a long tunnel but I think finally I can see light at the end of it. That light has allowed me to make sense of feelings that were confusing to me as I fumbled in the dark. And finally I think I understand that I need to listen to what my body is telling me and treat it with compassion and care. I feel stronger as a result of acknowledging my weakness. I feel hopeful once more and accepting of what is and what will be. I can finally embrace my unseen future and be at peace with the acceptance of that.