Here Be Dragons

Over the last few months I have been slowly recovering both physically and mentally from the combined effects of all my treatments. Since last November the only cancer treatment I have been on is a type of hormonal therapy. It is a daily tablet, it doesn’t involve any hospital visits and I am lucky that I have minimal side effects from it. It feels as though I have been resting in calmer waters for a while after a long and vicious storm. I have slowly been adjusting to a different sense of reality, one where I am able to participate more fully in life. I may still be fatigued and suffering from ongoing side effects but the most distressing symptoms are abating and I am regaining a sense of myself which I largely lost during chemo. I am able to spend more time with Arthur and be more present with him for which I am profoundly grateful.

However, the storm is on the horizon and once again I am on the verge of undergoing intensive, radical treatment. The secondary breast cancer that was in one vertebrae in my spine has returned exactly as before and a new site of cancer has also been found in the lymph nodes near my kidneys. My medical team believes this is a recurrence of the cervical cancer which we had hoped was all gone but this needed to be confirmed by a biopsy, which I underwent this week. Pending these results, I expect to have surgery to remove the lymph node chain in my abdomen and five weeks of radiotherapy to both my abdomen and spine. It is possible that I will need to have more chemotherapy as well.

I feel that each time my scans reveal more cancer and I have to start a new treatment I am venturing ever further into the unknown. It is a daunting feeling; there are times when I imagine myself to be an explorer heading into a region which maps mark only with the words “Here be dragons”. The dragons in my case are not mythical or imagined; they exist and have taken up residence in my body. Like an ancient explorer heading into new territories, there are many unseen perils ahead of me and I must use all my courage and cunning to survive.

Adversity is a very hard beast to live with. We are used to describing it as something to be overcome, we aim to triumph over it rather than be overwhelmed by it. It brings forth images of hardship and disaster, misfortune and suffering. It is certainly not something that anyone would welcome. The trouble I have is that I must live with my adversity and accept it as a defining element in my life. I have struggled with the constancy of its presence in my life, I wish I could triumph over it, move past it and live beyond it but cancer has a knack of overwhelming everything in its path and infiltrates every aspect of life. I am not going to surrender any of my hard-won hope and optimism but I am slowly coming to a realisation that this disease will always be a part of my life. I do not seek pity from anyone for the hardships in my life nor do I want to allow myself to wallow in sadness or anger. I don’t want to give it the power to control everything so I prefer to think of it as the grain of grit at the heart of the pearl that is my life. It may be at the heart of things but it is only one tiny part of something beautiful. I am trying to find ways of living with adversity that help me hold myself up and to continue to live successfully. These are some of the things which make it possible:

A family network.

I am immensely lucky to have a family who individually and as a group consistently act as a net to catch Arthur, Matt and I and hold us gently in our tough times. Not only do they help us with the practicalities of juggling cancer treatments with the needs of a busy little boy, they give us the space to decide how we want to live and how we want to handle our situation.

Solidarity and friendship.

I have found immense comfort and support from meeting other women who have similar experiences to mine. Most of my new friends I have not met except online on the Younger Breast Cancer Network on Facebook but the sense of communion is incredibly powerful. I have learned so much from these ladies and they have shown me much kindness despite their own trials.

Positive hope.

I try to keep my focus on positive possibilities rather than negative certainties. Nothing is ever clear-cut when it comes to cancer treatment and there is no one who can predict what my future holds. This is a scary thing to accept but it also means that no one can tell me I don’t stand a chance. Hope is essential to survival in all situations in life. I have to believe that there is a chance to survive long-term as that is what keeps me moving forwards.

A new kind of time.

Young children have much less awareness of the idea of the future than adults. I have been actively learning from Arthur about how to experience time in the intense way he does. He is always absorbed in whatever he is doing and I am trying to follow his example by living in the moment as much as I can. Its not always easy but it is very rewarding.

Accepting uncertainty.

This is something that I am slowly learning to do. I am living with an unpredictable disease which makes any thoughts of planning for the future hard. At the moment I can’t see past my results appointment next week as everything that might happen after that seems unreal. I used to find the uncertainty of waiting for a treatment plan would overwhelm my thoughts and make me very stressed but this time around I have been much more relaxed about it. With each new phase I learn something more.

Not letting fear rule me. 

Many of the decisions we make in our lives are based on some sort of fear but sometimes a traumatic experience like cancer can free you from this thinking. In many ways I feel liberated because a lot of the fear which held me back in the past has dropped away. I see more clearly now and many choices are simpler because my needs and priorities have changed.

Honest emotions.

I am trying to be better at being honest with my emotional reactions. I have some very good, tried and tested coping mechanisms which I have used to get me through all kinds of difficult situations in life. The problem is that they can become a mask for what I am really feeling. I don’t want to just grin and bear it anymore. There are still some emotions which I find very difficult to accept and I would be happy not to have to face but I want to live and feel more authentically than in the past. It seems to be a good measure of whether I am growing as a person.

Creativity.

I am a writer and creativity has always been at the very heart of my approach to my own healing. Writing is what makes me feel whole and over the last few months I have been finding new ways to access this. I have been having creative writing therapy at my oncology centre and it has helped me to reignite my desire to write. I hope that I will be well enough to continue to write during my next round of treatment.

Being Joyful.

This may be the most important aspect of all. I cannot choose whether or not I have cancer but I have a choice in how I live. I choose to wear my adversity as lightly as I can and to live with as much joy as I can. I want to celebrate the simple joys of living and see the pearl, not the grit.

Oh FEC!

In isolation in hospital; home again with Arthur and my nephew Charlie.

I’m back on chemo again, riding the chemo train and trying not to fall off. My new regime is a cocktail of three drugs known as FEC. It sounds like a joke name but my oncologist managed to tell me about it with a straight face. Every time I say it I think of Father Ted episodes and laugh to myself.
Unfortunately after having two lots of FEC I have just spent three days in hospital with neutropenia. My immune system was depressed due to the chemo and as a result I developed an infection. I was given IV antibiotics to stop me from developing sepsis and isolated in a side room to protect me from picking up any other infections. It was disappointing to have ended up in hospital; I’ve had 13 lots of chemo over the last 13 months and this is the first time I’ve had an infection.

I had been dreading starting chemo again. After having four months of Docetaxel which gave me terrible joint and muscle pain and left me utterly exhausted all the time I was fearful of heading back down into the foggy darkness that so often characterises chemo. I have found that the more I know about my treatment the better I am able to prepare for it and accommodate it in my life but having that knowledge can make the anticipation of it particularly difficult. Sometimes I find myself wishing that I didn’t know what I am about to undergo and feeling nostalgic for the days when I didn’t have such an intimate understanding of my treatment.

I feel a bit like Sleeping Beauty after she wakes up from a long and deep sleep. The last two years have been filled with ill health and most aspects of my life have ground to a halt as my fight with cancer has taken centre stage. After recovering from my first FEC treatment I found I felt more alive and more awake than I had for at least a year. I had been waiting to feel this way for so long and I was ecstatic when it finally happened. I am attributing this change largely to my latest homeopathic remedy giving me a boost at just the right time but also I have now survived a year past my first diagnosis and I am finally getting to grips with what it means to have a life-threatening illness.

I went deeply into shock when I was first diagnosed with cancer. It was out of the blue and I had no warning it was on the cards for me. The shock made me numb and the numbness protected me. It was a natural defence mechanism to insulate myself from harm. It worked really well but it also left me feeling separated from my own life. I didn’t know how to deal with having cancer and so I didn’t try to. I put all thoughts of ‘processing’ to one side and focused on just two things – getting through the treatment and looking after Arthur. As time has gone on and I have had more and more treatment I have started to realise that there isn’t a quick-fix solution for me and I have slowly come to terms with having cancer in my life. I’ve  had to accept so many changes over the last couple of years that I never thought I would. Some days I can barely remember what life was like before I had cancer and it feels like this disease has consumed my past and overwhelmed my present and I can’t see beyond it. On those darker days I remind myself that time is a great healer and adjustment doesn’t happen overnight. It isn’t easy and there are many aspects which I struggle with every day but I am ready to live without a protecting cushion of emotional numbness. Nothing has changed except my attitude. I am still walking a high wire in the hope that I can be cured but I am starting to be a bit more relaxed about it now.

Time plays funny tricks on you when you are ill. It feels as though I am both stuck crawling along at a snail’s pace and living life at a breakneck speed. The mundane nature of continuous treatment is mind-numbingly slow as life is reduced to a never-ending cycle of hospital appointments, scans, treatments and recovery but conversely I also feel like an Olympic hurdler having to jump over the next barrier and then the next and the next without a chance to catch my breath or take in what has happened to me at each hurdle.

Cancer has taken so much away from me and yet surprisingly at my core I feel fundamentally unchanged. I am still the same person I was before, if anything I feel more at ease within myself than at any other time in my life. Having cancer has forced me to let go of everything extraneous in my life. It has also made me relinquish the unrealistic expectations I had for myself. I have always suffered because of my perfectionism. I measured myself against an impossible yardstick and then when I inevitably failed I felt useless and unworthy as a human being. It was a form of self-punishment for not being perfect. I have always found it hard to treat myself with the same respect and generosity that I instinctively offer to others. Since my diagnosis I have been placed in a position where carrying on as before is no longer an option. I must find a way to be kinder to myself and allow myself more leeway to get things wrong, to make mistakes and not denigrate myself for making them. I want to one day live beyond my cancer and I hope that when that time comes I am a happier, more fulfilled human being.

A Pregnant Pause

 

Pregnancy is supposed to be a time of fruitfulness, a time to revel in the earthy pleasure and beauty of bearing a child. The contrast with having cancer could not be greater.
This week it is Cancer in Pregnancy Awareness week and it is also an anniversary for me as 1 year ago today we brought our son Arthur home from hospital so I thought it would be a good time to write about my experience of being pregnant with cancer.
I really enjoyed being pregnant. I felt flushed with the wonder of it all. I loved the sense of communion with my child, I found it hard to focus on anything else and was excited to think about our future together. I loved being caught up in anticipation of a new life coming into the world and my life being on pause waiting for a momentous change to happen. That is not to say that things were easy or straightforward by any measure. I had an extremely difficult pregnancy and had spent much of it worrying about losing the baby. Our lives became governed by hospital appointments and scans and blood tests and discussions with consultants. It was a hard time for both Matt and I and we spent much of it hoping and praying that our longed-for child would be alright. At every scan we were on tenterhooks waiting to find out if the baby was still alright. We counted ourselves lucky every time as the baby was growing well despite all the problems I was experiencing. As the weeks went by and I entered my 3rd trimester we began to cautiously believe that all the problems might resolve themselves before my due date. We were even discussing with our consultant the possibility of a natural birth at a midwife-led centre. Matt and I were looking forward to the birth and to becoming parents and encouraged each other with promises of a future which wasn’t dominated by hospital appointments. Little did we know what was in store for us.
When I was first told I had cancer my fears were a horrible mix for both me and the baby. After all we had been through already I was now faced with having to risk my unborn child’s life for my own sake. Becoming a parent means putting your child’s needs before your own, this idea was ingrained in my mind and I struggled to accept that circumstances were forcing me to make decisions that required my needs to override his.
My initiation into motherhood was fraught with worry and sadness and pain. I had looked forward to being a mum for so long and the reality was so far from what I would have wished. I worried about myself, I worried about Arthur and I felt guilty about what I was putting him through. He grew inside me whilst my cancer was growing and I had to agree that he would be delivered early for my sake and I don’t think I’ll ever be completely okay with either of those things.
When we came home from the hospital a year ago Arthur was 19 days old and had already been through so much in his life. He was strong and healthy but he was born 7 weeks early by caesarean and spent most of the first 2 weeks of his life in NICU in an incubator. He needed breathing support for his first few days and he developed an extremely serious sepsis infection when he was only 8 days old.
Both Matt and I fell in love with him instantly and both of us felt how strong he was from his very first breath. He only weighed 4lb 12 oz at birth but despite how tiny he was we knew he was a fighter. I was able to stay in the hospital for as long as he was and spent my days shuttling between sitting with him in NICU and going to the oncology centre for my treatment. I wanted to be with him as much as possible and felt a pain in my chest if I was away from him for too long which could only be cured by being close to him.
Every time I worry about the negative impact my cancer is having on him he proves me wrong. He doesn’t know that our life isn’t normal and he just accepts it as it is and so I try to emulate him. I worry about what the future holds for our family and I know that as he gets older Arthur will need more from me and I hope that I will be able to give him all the support and attention he deserves. I have had to work hard to put aside my feelings of guilt and I remind myself that we have a unique bond. My son saved my life before he was even born as my cervical cancer was only discovered because I was pregnant. I owe him my life and now I am fighting to survive for his sake and for my own.
For more info on Cancer in Pregnancy awareness week check out the charity Mummy’s Star.

 

 

 

 

 

 

Cancer/Mum

Cancer and Motherhood. Those are two words that aren’t supposed to go together and yet they both entered my life at the same time. They have both taken over my life and consumed all my waking moments so that I cannot quite remember what or who I was before they came along.
I know which of the two I prefer obviously but they are pretty intertwined in my mind. I have only ever dealt with cancer in the light of becoming a mother and I have only ever cared for my son in the context of being a cancer patient.
I sometimes wonder what it would be like to go through either experience on its own. If I had to face cancer without my son to bring joy and laughter into my life it would be so much harder to cope. If I had become a parent without the cancer I might not have been forced to look so clearly at what is important in life, I might not have learned to glory in the simple things.

This is a significant week for me. One year ago today I was diagnosed with cancer for the first time. A week today my son will turn one.
One year ago today Matt and I were sitting in the hospital waiting to find out why I had been called in early for my colposcopy results, trying and failing to suppress the feeling that something must be very wrong. When a nurse offered us cups of tea whilst we waiteddayr my consultant we joked with each other that it was a sure sign that there was bad news coming. We were right.
Ever since I found out I was pregnant I had been ill. I had been bleeding throughout the pregnancy and had to be closely monitored to check on my health and that of the baby. We spent a lot of time going back and forth to the hospital and I was admitted for 4 days for my very first stay in hospital. It was a very difficult time with a lot of stress and worry but we got through it and as we approached the last months of the pregnancy we were cautiously optimistic that everything was okay. We told ourselves that we were through the worst of it and soon we would be having a healthy baby and we would be able to put all the difficulties of the last year behind us.
When I think back to that day and I remember how I felt I can only recall 2 emotions, fear of dying and fear of losing my child. My worries for my child consumed so much of the next few weeks and as I sat next to him in his incubator I promised him over and over that I would live, that he would know me and that I would be there for him.
I have been through so much in the last year and I still have a long way to go but the best thing is that I am still here and I still want to be here.
Having cancer highlights the uncertainty of life and it is easy for me to be afraid to hope for the future as if hoping for too much will somehow damn me. I have so many hopes that I am afraid may not come true but I want to have the courage to believe in them.

Here are my hopes for today.
I hope that in a year’s time I can look back and feel glad that my treatment has worked.
I hope one day I get a chance to live free and clear and get to learn how to be a mother to my son without illness curbing our lives.
I hope my son grows up to honour our joint experience but doesn’t feel limited by it or bound to it.
I hope that I can find an identity beyond just Cancer patient and Mum.

 

The Cancer Rollercoaster

From the moment I was first diagnosed with cancer I have been flying along at high speed without the chance to catch my breath. The Cancer Rollercoaster can suddenly throw me down into troughs of pain and fear and then I ride high again on hope and good wishes. As every cancer patient knows, the highs and lows we go through can be extreme.
I feel I am going from one major trauma to the next without a pause, without a chance to process any of it in my mind or allow myself the time to feel the sadness and anger and grief that go along with cancer.

Results days are always difficult. I feel pulled in two, half of me wants to get it over with as soon as possible as I think the more information I have the better I am able to deal with what’s happening. The other half wants to curl up somewhere dark and pretend none of it is real. It feels like my life is in someone else’s hands and I have to wait to hear if I will survive or not. I try to be pragmatic and not get my hopes too high nor allow myself to fall into despair. The truth is that for every piece of good news I get there is also the sobering reality of what I am up against. For every successful treatment I have there is always the reminder that I will have to have more.

I had my latest results from my oncologist on Friday. The main highlights are that the surgery went well but that I will have to have more treatment. I had been steeling myself for this news for weeks so it was no surprise but whereas I had thought I would be having radiotherapy followed by chemotherapy it is actually going to be the other way around. My heart sank to hear this. I have had both types of treatment before and I was hoping to have radiotherapy next as it is less debilitating. I have only just started to recover the smallest part of myself after 3 months of gruelling chemo and then surgery and now I have to do it all again. At the start of each new treatment I have to ask myself how much more I can endure. Each time I am physically weaker than the last and I worry about how much more my poor body can cope with. It is so hard to agree to any treatment that makes me feel so ill or requires yet more surgery. To choose to do it is very hard even though I know it is what I must do in order to survive. I am sure I will have to ask myself these questions many more times before my treatment is over. At the moment it feels there is no end in sight; apart from the next round of chemo I’ll definitely need to have radiotherapy to my chest. I will also need to be assessed by a spinal surgeon to see if replacing my one cancerous vertebrae is possible. It is likely that I’ll have radiotherapy to my spine too. There is also a query about a shadow on my sternum which is not thought to be cancer but it can’t be ruled out entirely.

I discussed this latest round of chemo with my oncologist and asked if he thought I should have it. He said that he thought that I should go ahead but described it as a philosophical decision. Stage 4 cancer is normally incurable and I am undergoing very aggressive treatment in the hope that it can be cured. I don’t know what percentage chance he would give me and I don’t want to know. I know from my previous cancer experience that those kind of numbers are the ones that haunt me in the dark hours and I am glad I don’t know them this time around.

The treatment I am having to undergo has taken over my life in the last year. Right now I am emerging from the fog of chemo and discovering the world again. I realise that I have not been living my life and I am missing out on so much. Whilst I am waiting to begin my next treatment in the next few weeks I am determined to make the most of my time. I may not be feeling great but I am going to do as much as I can to enjoy myself and to bank some good memories to get me through the hard times. I’ve just spent the weekend in Hereford with family and I feel so buoyed up by it. I had been wanting to go ever since I was first diagnosed a year ago and I finally made it. It feels great to achieve something which I have been aiming towards for so long. My ambitions are very small these days but no less significant for it.
This week Matt and I are going to go to Bath for a short break. We have tickets for Bath Spa which I have had since November and this is the first time I have felt well enough to go. We’ve booked a lovely hotel in the centre of Bath and we are going out to dinner in a veggie restaurant that I have wanted to try out for ages. We are really excited to be doing something special that is just for us. It will be the first time since Arthur was born that we have been away together and a chance for us to reconnect. We have both been under such immense strain in the last year which inevitably has taken a toll on our relationship. We have put all our energies into coping with my cancers and to looking after Arthur and every other aspect of our lives has been put on hold. The dark clouds are all around but for now I want to claim a little piece of blue sky.

Life In Extremis…

My name is Veryan, I am 34 years old and since May 2013 my whole life has been dramatically turned upside down and I am living with the consequences.

Last May when I was 32 weeks pregnant with my first child I was diagnosed with Stage 2b cervical cancer. My partner, Matt and I were devastated and in total shock. We had been happily preparing for our new family despite having a very difficult pregnancy when suddenly everything was thrown into peril on a scale we had not imagined we would be facing.  One week later our son, Arthur was born 7 weeks premature by caesarean in order that I could start my treatment as soon as possible. Arthur was in NICU (Neonatal Intensive Care Unit) for the first two weeks of his life and we came home from hospital when he was 19 days old, just after I had started my cancer treatment. I fell in love with him instantly and it was so hard watching him go through those first few weeks in hospital knowing it was because of me.

Over the next few months while Matt and I learned how to care for Arthur and got to know him and enjoy him I underwent a regime of daily radiotherapy and weekly chemotherapy followed by two brachytherapy treatments (internal radiotherapy). In September I had a hysterectomy and oophorectomy (ovary removal) operation. All the treatment went very well and the scans showed no signs of the cancer remaining. We were all starting to breathe easier and I was looking forward to getting my health back and being a more hands on mum at last.

By December I was slowly recovering from all my treatment and getting used to parenthood, and wondering what life after cancer would be like when I was diagnosed with another, unrelated cancer. This was breast cancer in my right breast and it was then confirmed just after Christmas as Stage 4 locally advanced breast cancer which had spread to one vertebrae in my spine. I started chemotherapy on New Year’s Eve and had it every three weeks until the end of March this year. On the 2nd May I had a total mastectomy of my right breast and axillary clearance of the lymph nodes in my armpit. I am going to start daily radiotherapy in a few weeks time and I will need to have more treatment after that, possibly including more chemotherapy. Although the cancer is Stage 4 and has spread I am hopeful for a good outcome. The latest bone scan cannot detect any cancer in my spine which is encouraging and I am keeping hold of the belief that there is nothing to stop me from being fully cured. I have a vision of myself living free and clear of cancer which I want to reach one day.

I have decided that I want to write about my experiences over the last year and to share my thoughts on how to cope with a very difficult situation. I hope that in this blog I will be able to describe what is happening to me and give an insight into my life and experience. I have been told by many people, including many medical staff, that my situation is very unusual, and possibly unique. There are some people who are diagnosed with more than one cancer and there are others who are diagnosed with cancer when they are pregnant but not all at once! It seems to me that circumstance has placed me in a very special position to be able to write about living life in extremis.

Having cancer is a deeply traumatic experience, especially at my age when I could reasonably have assumed that I had many years of good health ahead of me. To have cancer at the same time as becoming a mother has been very painful and upsetting. Arthur is a source of immense joy in my life but I am sad for what we have both lost. I have missed out on many of the experiences which new mums enjoy. Instead I am living with trauma as part of my everyday experience, it is part of my life all the time and I am having to learn how to accommodate it. My desire to write this blog is partly to use it as a way to make sense of what’s happening to me and despite all the difficulties I face to continue to find ways of making sure I enjoy my life and my time with my partner and our beautiful son and my amazing family who have done so much for me.

My other reason for writing this blog is to try to say something truthful about life. I want to write about what it means to experience life in this way, with a constant reminder hanging over my head that nothing is permanent, nothing is guaranteed, nothing is fixed and decided and nothing is truly in my control. I am no longer able to take for granted all the things I should be able to expect from life. I am being made to find a new way of living and hopefully it will be a better life than before and I shall be better for it.