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Britain against Cancer

It was a great pleasure to speak, on the 6th of December, at the All Party Parliamentary Group on Cancer’s Britain Against Cancer conference in Westminster Hall.

More information about the event can be found here. http://www.macmillan.org.uk/about-us/what-we-do/we-make-change-happen/we-work-with-governments/appgc/britain-against-cancer-conference

I really enjoyed the day, I met some great people, and it was a huge privilege to share some of my thoughts on cancer and its image in 2016.

The full text of my speech is below:

The Image of Cancer

Good Morning. My name is Kate and it is a great privilege to be here today to speak about my experience of cancer and its image.

If you had told me two and a half years ago, I would be here this morning, I wouldn’t have believed you.

Because, in July 2014 I was taken by ambulance, to A&E and then stayed in hospital for three weeks. On the first night, I was too fragile to be moved to Intensive Care and, they almost lost me. Two days later I was diagnosed with Stage Four B Hodgkin Lymphoma. And I have been living with cancer ever since.

I’d been unwell for some time but, busy teaching six days a week at a boarding school, I ignored it. The initial signs, tiredness and weight loss, I attributed to stress and overwork.

Later symptoms such as night sweats and extreme itchiness, I did not give myself the time to question.

By the time, I could feel lumps in my neck, armpits and groin, I was petrified and in denial. Even if I had seen a doctor I would not have found the words to describe what was happening to me. I worried about upsetting my friends and family and how I would be perceived with cancer.

I have had five courses of chemotherapy, four batches of radiotherapy and, courtesy of my amazing donor brother, one allogenic stem cell transplant to get me to where I am today; well enough to attend this conference.

My immune system and blood cells are now a copy of my brother’s. My blood type has changed to his, my blood cells have Y as well as X chromosomes, so if either of us left blood at the scene of a crime, we could both get blamed!

The last two and a half years have been quite a journey. Today we have this incredible opportunity to gather, discuss the state of cancer in 2016, and inspire plans for change. There are three things that I’d like to talk about – specifically on the image of cancer.

  • Firstly – Why does the image of cancer matter?
  • Secondly – The status quo: the image of cancer in 2016
  • Thirdly – The future: how should cancer be perceived?

Why does the image of cancer matter?

Why am I talking about the image of cancer? And particularly to an audience like you; with amazingly expert knowledge. Surely the most crucial thing is to develop more effective treatments? Medical advances are vital and I look forward to some of today’s speakers providing insight into the latest developments. But, as we all know, a diagnosis of cancer means much more than a discovery of uncontrollably dividing cells. Cancer has affected every aspect of my life and its image has been central to how I, and importantly others around me, have understood cancer. Much of my journey would have been easier if cancer was perceived differently and I would therefore like to encourage a discussion about how we can improve its image in the future.

 The status quo: the image of cancer in 2016

I’m firstly going to explore two popular images of cancer. These are stereotypical not universal images but they help to highlight some issues with the popular understanding of cancer.

The first image: And this I will call the ‘survivor’.

The second image: And this I will call the ‘sufferer’.

For some, one of these images is the reality but for many, including me, it is not. In an era where 1 and 2 will develop cancer, there is no longer a simple cancer dichotomy; it is not just kill or cure.

Turning to those images.

Firstly, the ‘survivor’. Their experience is often summed up as; a lump, an operation, radiotherapy, chemotherapy, the all clear, remission, survivor. The language around this framework is all about fighting. A recent campaign that subscribed to this idea called for a ‘revolution’ or a ‘rebellion’ against cancer. It is something to be ‘beaten’ and ‘overcome’. For a time, I identified with this image. I was apoplectic with rage about my diagnosis, I wanted to scream at the sea and crush cancer but, after a time, I realised this attitude would only get me so far. I see three main problems with the idea of ‘destroying’ cancer:

  1. It suggests that patients have some sort of control. If only you battle hard enough then you will win your fight and you will become a survivor.
  2. It suggests that if you are fortunate enough to be in remission you have somehow achieved something. Coming to the end of treatment is not the only part of the cancer journey that needs to be celebrated.
    1. I remember how unsure I felt when people congratulated me on the ‘end’ of chemo. I felt like a sad failure when I realised that, yet again, I was going to need more treatment. I felt like I hadn’t been doing my best to overcome my cancer.
  3. This image also suggests that once you have your ‘survivor’ badge, cancer is finished. People cannot understand why a ‘survivor’ would still be nervous about a scan. They do not consider that with every check-up, the crippling fear returns.

Secondly the sufferer. Their experience of cancer is often summed up as: a lump, more lumps, inoperable, a terminal diagnosis, chemotherapy, palliative care, death.

This image is all about tragedy. It would be misleading to suggest that cancer is not, at times, tragic. But thankfully tragedy is becoming less common. More than half the people receiving a cancer diagnosis will now live ten years or more.

Even if the sufferer does not ‘succumb’ to cancer, this image encourages pity. In a recent radio broadcast, a person being treated for cancer remarked ‘Cancer takes your dignity away’. This sufferer was being portrayed as a victim.

I want to challenge this image too because:

  1. Perversely, while the first image misleadingly suggests that ‘survivors’ are totally responsible for their future, the sufferer image suggests that everybody else affected by cancer is not. When people with cancer are perceived as ‘victims’, it suggests that they cannot affect their experience. It leaves them helpless and vulnerable.
  2. The sufferer image ensures that cancer is perceived an illness. It can encourage stigma and leave those living with cancer feeling like they have something to hide. I have lost track of the number of times people said ‘I’m sorry’ when learning I have cancer. Apologies are not necessary.
  3. The sufferer image breeds fear. It means that people with suspicious symptoms delay going to the doctor because they are terrified about what a diagnosis of cancer would mean. Survivor and sufferer; both are sometimes useful but by themselves are increasingly inadequate to represent cancer in 2016. So what can we do so that cancer is portrayed differently in the future?

The future: how should cancer be perceived?

1. Cancer can be, and is increasingly becoming, a chronic condition:

There are many, including me, who are living well with cancer. Those who are no longer in treatment are also living chronically with cancer. For example, those in remission cannot help but worry about previously dismissed aches and pains. Whether someone who has been affected by cancer is still in active treatment is in many ways an arbitrary point. A person living after an ‘all clear’, is still dealing with cancer. The real distinction in experience comes between those who have had a cancer diagnosis and those who haven’t yet. What if we stopped just celebrating ‘survivors’ and instead everybody who has been affected by cancer?

2. Cancer is as much a mental as a physical condition – which treatment should reflectThe hardest challenges I am facing are currently mental.

Macmillan have provided counselling to help me adapt my life, and the lives of those around me, to make permanent room for cancer.

At a time of stretched NHS mental health services, I’m extremely grateful for the counselling which was provided within weeks of my referral.

Even for those who are no longer in physical treatment, the mental effects are ongoing. When the routine of regular hospital appointments disappears, the loneliness can start to creep in.

Imagine a world where it was publicly understood that the mental side of cancer needs to be treated as seriously as the physical side. It would transform the lives of everyone affected by cancer.

3.It is possible to live well with cancer

I have, as much as possible, lived well throughout my cancer journey.

I walk, run, sail, ski, read, paint and I have kept a blog about my experiences.

I volunteer for the National Trust and for my local school. I haven’t yet returned to work but I am hoping to do so soon.

Our working world is not always very accommodating for people with cancer as the unpredictability does not fit well into the workplace. If we truly began to accept cancer as a chronic condition, in the way that diabetes or HIV are, it would be even more possible to live well with cancer.

4.Call cancer ‘cancer’

We find so many ways to avoid calling cancer ‘cancer’. We call it ‘the big c’, euphemistically say ‘she’s not been well’.

But as soon as it is called anything apart from cancer it suggests that there is something to hide. Making assumptions about cancer is difficult; people say ‘you must feel so poorly’. ‘you must be suffering’.

Everybody’s cancer is complex and unique. Call cancer ‘cancer’ and if you want to know how somebody with cancer is feeling, then ask.

We should talk even more openly about cancer and those affected should never feel like they have anything to hide.

I have never, since my diagnosis, felt ashamed of my cancer. I lost my hair, twice, and I proudly wore my bald head, always with earrings, and sometimes, courtesy of an artistic friend, with decoration on top.

Sharing the new image: we should be increasing cancer education

As much as people know that cancer treatment may involve chemotherapy, and or radiotherapy, and or an operation, so few people know what this means.

Walking into my chemo ward for the first time I expected to see cancer patients, ill people, people who were not like me. I was delighted to realise that the others in the ward were just people.

I wrote a blog piece on chemotherapy which was well received; people want cancer demystified.

We have had ‘24hrs in A&E’, ‘One born every minute’, ‘Inside the Portland Hospital’ why have we not had ‘A day in the life of the Royal Marsden’?

Fantastic people within the NHS and Macmillan have helped me to look at cancer in a different way. Messages about cancer should radiate out of hospitals and Macmillan centres. If people knew more about cancer and the reality of treatment, fear and stigma would decrease.

Conclusion

In conclusion, I hope we can all agree that the two conventional images of cancer; survivor and sufferer, are insufficient to understand cancer in 2016.

While my speech has been all about images and labels, I have not suggested a new label for those affected by cancer in the future.  This is because I don’t think one label is enough –  we instead need an infinite number of labels. We should all be creating our own images of cancer.

I have been surprised to find that I no longer want an identity without cancer but, equally, I do not want it to be my entire identity.

I’m not a survivor, I’m not a sufferer. I’m a tall, cat loving, skiing addicted, history teacher from Emsworth. I am Kate and I am living with cancer.

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Learning to live with cancer

I wrote an article called ‘Learning to live with cancer’ for my school alumni magazine. It tells our cancer story. I explained how life with cancer is not only possible it can even be great.

The full text is included below:

Learning to live with Cancer

Kate Corney (OP 2003-05) studied History at Queens’ College, Cambridge then took a gap year before working in London as a Conference Producer. In 2012, she got her first teaching job at Brighton College and, a year later, she and her partner Mark moved to Haileybury College in Hertfordshire. In July 2014, their lives were turned upside down when Kate was diagnosed with cancer. They moved home to Emsworth for treatment and to be closer to their families. This is the story of how they learned to live well with cancer.

Living well with cancer sounds like an oxymoron. When someone says the c-word, two familiar narratives come to mind. Firstly, survival; a lump, an operation, radiotherapy, chemotherapy, the all clear, remission. Secondly, defeat; a lump, more lumps, inoperable, a terminal diagnosis, chemotherapy, palliative care, death. For some people this is helpful as their cancer broadly fits one of these frameworks. But for many, including me, it does not. I have been diagnosed with cancer at a younger age than most people but Cancer Research UK now estimates that one in two people in the UK will develop cancer at some point. We’re almost all living with some experience of cancer but too often we are not accepting it, or addressing it, enough.

‘I had been unwell for some time but… ignored it’

In July 2014, I was admitted to A&E at Queen Alexandra hospital. Two days later I was diagnosed with Hodgkin Lymphoma. I had been unwell for some time but, busy teaching 6 days a week at a boarding school, I had ignored it. I had attributed the initial signs – tiredness and weight loss – to stress and overwork. Later symptoms such as night sweats and extreme itchiness, I did not give myself the time to question. By the time I could feel lumps in my neck, armpits and groin, I was petrified and in denial.

Even if I had seen a doctor I would not have been able to articulate my situation. I could not find the words to describe to anyone what was happening to me. I worried about upsetting my friends and family and worried about how they would perceive me. With terrifying numbers of lumps in various locations, I was almost certain I had cancer but I did not know that there are more than 200 different types. I was only vaguely aware of lymphoma which is the general name for the 60-plus cancers of the lymph system. There are two main types; Hodgkin and Non-Hodgkin. With approximately 1,700 new diagnoses a year in Britain, Hodgkin Lymphoma is relatively rare.

The feature of my Stage IVb Hodgkin Lymphoma that finally forced me into hospital was fluid in my chest cavity. An X-ray showed a mere sliver of my lungs remained clear for gaseous exchange so I was progressively being suffocated from inside. On the first night, I was too fragile to be moved to the Intensive Care Unit and they almost lost me. On the second day, I had a chest drain which allowed me to breathe more freely. On the third day, I met my outstanding oncologist and clinical nurse specialist who have been looking after me ever since. It was three weeks before I was well enough to leave hospital as a new cancer patient.

I feared that cancer would bring loneliness and isolation, but I was wrong. Mark and my Mum were with me at diagnosis and have been at every appointment since. I had a hospital room filled with cards, presents, and love and was humbled by the countless gestures of support that I received. Spending time with my loved ones was my lifeblood in hospital and has been ever since.

Chemotherapy, radiotherapy and 20.5 million stem cells

I had my first dose of chemotherapy before I left hospital. Most chemotherapy is administered as an outpatient but the hospital made special provisions so I could receive the drugs on the ward. My cancer was so advanced that the chemotherapy made me feel better instead of worse!  Over six months I had three courses of steadily stronger chemotherapy and one course of radiotherapy. Around Christmas 2014, we learned that none of them were going to cure me so we began preparations for an allogenic (or donor) stem cell transplant.

An allogenic stem cell transplant replaces a patient’s bone marrow and immune system with a donor’s, and the donor and the patient’s immune system must match. A full sibling has a 25% chance of being a match and, for patients without, there is an international register of stem cell donors. I have two siblings, who were both tested, and we were fortunate that my brother Sam (OP 2003 – 07) was a match.

It took six months to medically and psychologically prepare us both for the transplant in June 2015. I spent a month in virtual isolation to protect me while I had no immune system. I was allowed visitors, but only on strict terms. I received intravenous drugs, including ultra-high dose chemotherapy, for the 10 days before my transplant to destroy my immune system.

On the day of the transplant, Sam was connected to a machine which filtered his blood for four hours to harvest his stem cells; then it took an hour for me to receive them intravenously. Ever since, my body has used them to develop my new immune system which is an identical copy of Sam’s. My blood type has changed to Sam’s and my blood cells have Y as well as X chromosomes. If either of us were to leave blood at a crime scene, we could both get the blame!

When I returned home, I had to take special measures to avoid infection. I could not go into any public indoor spaces and had to be extremely careful about eating, drinking and sun exposure. Today my new immune system is strong and I hope it will soon be mature enough for me to be able to receive all my childhood vaccinations again. My Hodgkin Lymphoma has not entirely gone but my maintenance treatment is low-level.

New hair and now new challenges

I’m facing a future with cancer and people have been shocked that I have not crumbled. I did hope and believe in a life entirely free from cancer but, even if I am eventually cured, this will never be the case. What has surprised me is that now I would not want an identity without Hodgkin Lymphoma. Society assumes cancer is always negative; the illness is feared and the patients are pitied. This is dangerous. Cancer stigma drives those with suspicious symptoms to delay going to the doctor and leaves those living with cancer feeling like they have something to hide.

I have never felt ashamed of my cancer. I lost my hair twice and my decision to wear my baldness without hats, wigs or scarves was liberating. It did sometimes attract public comment but I was always happy to talk. My hair has now returned with full force. The wavy bob of my pre-cancer days is long gone and I have a head of corkscrew ‘chemo’ curls.

Cancer is, long-term, as much a mental as a physical condition. I am learning to adapt my life and the lives of those around me to make permanent room for cancer. Macmillan, who have given critical support throughout my journey, are providing me with counselling. At a time of stretched NHS mental health services, I’m extremely grateful for this help which was provided within weeks of my referral.

I have remained as active as possible throughout my journey. When I was first admitted to hospital, I could not climb stairs and spent a month in a wheelchair. Since I regained my basic strength, I have not looked back. I’ve walked around Emsworth millpond, along coasts, over the South Downs and up mountains. I regularly run 5k at our local Parkrun. I cycle, I sail and this winter we went skiing for the first time since my diagnosis.

I hope that it is possible to work and have cancer. After two years away from work, I am planning to return to Haileybury at some stage this year. Much of my identity since my early teens was crafted around intellectual achievement, but the extreme focus that I placed upon success was unsustainable. I prioritised work over friends, family and, ultimately, my health. I have found many ways to feel productive, useful and fulfilled without work. I kept a blog in the first year of my journey and am now expanding it into a book. I paint, read, and listen to podcasts or Radio 4. I am volunteering at Petworth House and in the History department at PGS. I look forward to going back to work but I will not let it define me again.

I have shared my story with the hope that people will find it useful and learn from my experience. Learn not to ignore troubling symptoms or put off consulting a medical professional; learn how to talk about cancer. Living with cancer is not only possible, it can even be great. It would be misleading to suggest it has not, at times, been indescribably challenging but it has also been enriching. Today, I understand the importance of balance, of living in the present, but most of all prioritising friends, family and love. I’m not just a teacher, I’m not just a cancer patient, I’m both of those things and more. I am not ill; I am Kate and I am living with cancer.

 

Information Boxes:

LYMPHOMA

Lymphoma is the most commonly diagnosed cancer in the under 30s. Hodgkin Lymphoma is more common in people aged 20-34 and 70-79. Lymphomas, like all cancers, come with many symptoms and can be difficult to diagnose.

‘PITS’ highlights the four most common lymphoma symptoms.

  • Persistent lumps (usually in the neck, armpit or groin)
  • Itching
  • Tiredness
  • Sweating (particularly at night)

These symptoms are most often due to other causes but if you are at all concerned contact Macmillan (www.macmillan.org.uk), the Lymphoma Association (http://www.lymphomas.org.uk) or your GP.

 

STEM CELL DONATION

Two thousand people in the UK need a stem cell or bone marrow transplant every year and it is usually their last chance of survival. Two thirds will not find a matching donor in their families and will require an unrelated donor. Becoming a registered donor is simple and signing up requires only a spit sample. These four organisations recruit potential donors in the UK.

 

MACMILLAN CANCER SUPPORT

Macmillan say ‘No one should face cancer alone’ and have offered essential support to me and my loved ones throughout our cancer journey. In May 2015 Macmillan came to Emsworth to document our story. Our pictures, video and interviews can be found at http://www.macmillan.org.uk/information-and-support/resources-and-publications/stories/kate-hodgkin-lymphoma/kate-support.html.

 

Life in a ‘bubble’

 

The IV Pump
The IV Pump
Completed 'I love Winter' jigsaw puzzle
Completed ‘I love Winter’ jigsaw puzzle
B is for Bollocks
B is for Bollocks
Day -5
Day -5

Today is Day -5. My 5th day of living ‘in a bubble’. In 5 days time it will be Day 0, the day of my Stem Cell Transplant, the start of my new life.

I am adjusting  as well as can be expected to life in two rooms; my bathroom and my everything else room. My situation improved greatly yesterday when I was moved into a new and significantly bigger room which should now be mine for the duration of the transplant. I now have an exercise bike, a TV and a DVD player and all of these should help to bring a bit more variety to my life inside four walls.

I have made my mark on the place, sticking up photos and cards to make it feel more like a home. My favourite piece is my ‘B is for Bollocks’ sign. My dear friend Lou sent it to me when I was in hospital last year. B is for Bollocks – Bollocks to cancer. My nurse remarked on how brilliant it was suggesting that there should be a copy on every patient’s wall.

As far as treatment is concerned it has been a case of so far so good. I have been fortunate enough to have not reacted particularly badly to any of my treatments so far. I have had three days of Campath, an antibody treatment, and two days of the chemo drug Fludarabine. Today is my third day of Fludarabine and I will have it for a further two days. All of the drugs are hooked up to my ‘tentacles’ and are slowly pumped in by the IV machine which is a painless and surprisingly mundane procedure; often I forget that I am connected at all.

 

 

How to do a stem cell transplant…

In truth, the title of the post is slightly misleading. I currently have no idea how to do a stem cell transplant but starting from Tuesday I am going to find out. I am going to have an Allogenic Stem Cell Transplant at Southampton General and this will hopefully be my cure.

In short this means that my immune system and my bone marrow are going to be replaced by a donor’s. In my case, I’m lucky enough to be able to have a donation of stem cells from my fantastic brother, Sam, as we are histocompatible siblings.  I have two siblings and each had a 1/4 chance of being a match with me. I was therefore very lucky to be an HLA match with Sam. Had neither of my siblings been a match then we would have had to have found a donor on the Anthony Nolan register but it is much more preferable from both a psychological and physiological perspective to be able to receive stem cells from Sam.

hickman small

So it is going to be a fairly lengthy process. If all goes well, I will be an inpatient for 6 weeks. During that time I am going to receive a very high dose of chemotherapy to destroy my immune system, this will take about 8 days. I will then receive an infusion of Sam’s stem cells which will take about 30 minutes. Post infusion, I will then hopefully start to grow a new immune system using Sam’s stem cells. Fingers crossed, about 5 weeks after my transplant, I will be well enough to released from hospital again.

When the transplant has taken, all of my blood cells will be a copy of Sam’s. My blood type will change from A-(my current blood type) to AB- (Sam’s blood type). People with blood type AB- make up 1% of the UK population so I will be joining an exclusive bunch. My white blood cells will have a Y chromosome in them so technically I will have male blood. Although my consultant was quick to reassure me that the blood does not affect hormones so I won’t take on any male characteristics. If I were to commit a crime and leave a blood sample post transplant then Sam would get the blame as effectively I will have Sam’s blood flowing through my veins.

There are lots of risks involved with the treatment. Firstly, the risk that I could react badly to the chemotherapy. Secondly, the risk that I could catch an infection while I have no immune system. And thirdly, the risk that I develop graft vs. host disease to an extreme; graft (Sam’s cells) vs. Host (me) can be really damaging in a variety of ways. Graft vs. Host does however have to happen to a certain degree as it will be the graft (Sam’s cells) vs. the Hodgkin’s effect that should hopefully cure me.

I am scared but I don’t really have a choice. This treatment offers me the best chance that I will be able to fully recover and live a normal life in the future. I have tremendous support from my truly fabulous family and friends and with them I am not going to go through this alone. I am feeling very well and youth and fitness should be on my side.

After a superb few months, I am about to become a proper cancer patient again. The signs have already started to show. For so long, since the regrowth of my hair, I have been looking  and feeling wonderfully healthy and normal. Last Thursday I was fitted with a Hickman line in my chest. This central line was fitted, under local anaesthetic, in theatre. The line goes directly in to one of my chest veins and means that chemotherapy and other fluids can be easily administered while I am in hospital. The ‘tentacles’ are unfortunately fairly major and have suddenly made me feel much more unwell again.

I hope to blog throughout the treatment. Creating a ‘Diary of a Stem Cell Transplant’ will give me a purpose while I am in hospital, will allow people to follow my journey, and hopefully may help future patients to have a better understanding of the treatment.

How to do hairloss…

My pillow looking like a sheepskin rug.
My pillow looking like a sheepskin rug.
Unveiling the new look to the world
Unveiling the new look to the world
Art therapy courtesy of my dear friend Alex
Art therapy courtesy of my dear friend Alex
The short crop 2 days before I went for the full shave!
The short crop 2 days before I went for the full shave!

Mark and baldieIn the hairdressers post shave

Hairloss.

In the words of Bengu, a patient on the Macmillan website, ‘Finding out that I was going to lose my hair was a really big deal to me. It was more upsetting than the cancer, because to me my hair was always my crowning glory.’

But what it is like to ACTUALLY lose your hair? Here is the story from my perspective.

To summarise in a sentence, losing hair is shit BUT being bald is pretty cool.

My hair loss journey started when my chemo was ramped up from the ABVD to the BEACOPP. My consultant, Ann, had warned me that the Etoposide in the BEACOPP mix would spell the end for my hair and she was right. All things considered, I think my hair did marvellously well. It stuck around for about 2 weeks of battering from the Etoposide and then very suddenly decided it had had enough.

I had been paranoid about losing my hair for so long. Sitting on the sofa I would do that thing where you run your fingers through your hair, remove a few strands, and had convinced myself that this was IT, I WAS losing my hair. ‘Oh no’ they said, ‘when it goes you will know’, and of course they were right.

One day that routine of running my fingers through my hair started to really generate something. It was not a few solitary hairs anymore, it was coming out in clumps.

‘Don’t wash your hair’ was what they advised. And so for 6 days I obediently didn’t wash. On the 6th day I woke up, surveyed the greasy mop on top of my head and concluded there wasn’t much point in having lank dirty hair so decided to take a shower.

I have never seen anything like it. I was trying to be incredibly gentle while I washed my hair but my scalp was literally shedding hair. There was effectively a mat in the bottom of the bath and it was disgusting. Imagine hair down the plughole multiplied by an infinite amount. I put it in the bin and tried to forget about it.

Scrutinizing my reflection post shower, I was faced with a head still covered in hair. Much less hair but still covered in hair nonetheless. So worried was I about losing it that I hadn’t used any conditioner and the hair was then all matted on top of my head as a result. I decided I’d have to brush it to at least make it look like normal hair and so brush it I did. Despite my best efforts to brush with care the hair was almost gushing out at this stage.

I tossed the swathes of hair from the hairbrush in the wastepaper bin. They were a grotesque reminder of my horrible loss. Mark and I concluded we would have to ceremoniously burn the hair. This was a terrible mistake. Singed eyebrows smell badly enough, a hair bonfire reeks!

That day I went to my lovely hairdresser Danielle and she cut my hair down to an inch long buzz cut. I managed to wear that buzz cut hair style for two days. It was great and a nice stepping stone but really the hair needed to go. It had got to the stage where I felt like I was drinking my hair; everywhere I looked bits of my hair just seemed to be drifting in the breeze.

On the Friday morning I woke up and my pillow looked like a sheepskin rug. I had slept terribly as it was really itchy and my dreams were disturbed with all sorts of horrible hairy images. I looked at Mark and he correctly suggested that it was time.

In that instant my only regret was that I can’t currently drink. I needed something stiff to get me through that door to the hairdressers.

I think the process of cutting my hair was more emotional for Danielle than for me. I was so ready and, as she started to shave my head, I felt nothing but relief. I had been intending to wear scarves and chemo caps but when the time came it wasn’t necessary. It seems that I am one of those people who has been blessed with an attractively shaped head.

For the first few nights my scalp was very painful . As the hair follicles are dying it can really hurt. I wore a chemo cap in bed to diminish the feeling of tenderness and allow my scalp to adjust to it’s new look.

Presented with all the hairstyles in the world, this is probably not the one that I would go for but all things considered it really could be worse.

For a cancer patient, who is so often prone to the horrendous chemo induced hot-flush, a bald head is a very practical hairstyle. There is nothing quite as refreshing as the feeling of a cold press on a scalp and when nausea inevitably comes a knocking, it is very nice to not to have to worry about hair.

Other people’s reactions to my hairloss have amused me. Mark has been indescribably incredible from the word go. Ever the practical man he is actually dreading the return of my hair as he is enjoying the new speedy shower Kate. There is a limited amount of stuff to do in the bathroom when one can’t play with one’s hair!

Some people have found it initially shocking but it has been amazing how quickly everybody has got used to it. I was obviously much more conscious about it to begin with and probably the most upsetting experience was on the Saturday morning after I had shaved my head on the Friday. Mark and I went for our routine walk around the millpond; me an increasingly proud baldie for all to see. At the shore we encountered some elderly fishermen. Probably some of the most conservative people you could possibly encounter and they had no shame about having a good gawp. I wish I’d said something, I certainly would now.

Other things that have amused me since.

When one of the consultants at the hospital asked me ‘how I was adjusting to life as a billiard ball’. I thought it was great. Although it was our first meeting he judged my sense of humour perfectly and had a good giggle.

When the butchers very politely described me to my dear friends Lou and Andy, as ‘the tall one’, the ‘bubbly one’ etc. very carefully trying to avoid mentioning most defining feature at present!

What has been pretty humbling has been the effect that it has had at the hospital. People have come up to me in the ‘chemo farm’ and congratulated me on my new do. I would only advise as many other people to do it as possible. I was never going to wear a wig as it would only feel like I was trying to hide something which is so far from how I feel right now.

 

How to do Chemo…

Kate receiving chemo at the 'chemo farm'.
Kate receiving chemo at the ‘chemo farm’.
The 'comedy' red syringe.
The ‘comedy’ red syringe.

So since I started getting my chemotherapy many people have asked what chemo actually is. For me it has now become horribly mundane but I realise that for most people it is still a bit of a mystery so I thought I would do a little post about the chemo experience.

It is really important that people know that chemotherapy is not as bad as it sounds. One of the reasons that my cancer was so advanced when it was diagnosed was that I had been petrified of going to the doctor and left it to develop. Part of the fear of the doctor was connected to a fear about the treatment. I can honestly say that although chemotherapy is undoubtedly not great, it has not been terrifying. The medical staff are so great and work really hard to ensure that the experience is as pleasant as possible. Since I have been diagnosed the most stressful thing that I have gone through has not been the treatment but instead my PET scans but that is not because of the cancer but instead because I am claustrophobic and so not a great fan of being put into confined spaces.

In essence to get chemotherapy, take one PICC line, hook it onto various intravenous (IV) drugs, sit and let IV into system over many hours, go home and lie on sofa until you feel better, and then repeat. Although in reality it is a little more complex than that.

To begin with I was on a treatment called ABVD http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/ABVD.aspx This is (to the best of my knowledge) the most common chemotherapy used to treat Hodgkin’s Lymphoma. It is made up of 4 drugs; the A doxorubicin (Adriamycin), the B (bleomycin), the V (vinblastine), and the D (dacarbazine). These drugs come in 4 separate IV packets. Some of them are big IV bags, some of theme are small IV bags and the doxorubicin comes in a ‘comedy’ red syringe.

While I was on ABVD, once every 14 days I would head into the ‘chemo farm’ at my hospital. The ‘chemo farm’ is a strange place, it looks a bit like a hair salon as there are lots of chairs placed about the room but instead of people getting their hair cut, people are receiving treatments. Guests are limited to one per patient, I guess to prevent the whole of Portsmouth descending upon the treatment space.

Anyway once at the ‘chemo farm’, a nurse would then come over and start hooking things into my line to administer treatment. Before and after receiving the drugs you have to have what is known as a saline flush. This basically means that they put salt water intravenously into your system through the line. The purpose of the saline flush is to clear the PICC line of any of the chemotherapy. The line needs to be cleared of chemotherapy as the drugs are basically poison and it is not good to have them sitting in your line. One of the drugs I receive has advice printed on it that states ‘for IV use only, any other method of administration would be fatal’. A nice reminder that these drugs are fairly strong stuff! The whole treatment would take about 4 hours and after that I would head home to lie on the sofa and let the drugs do their thing.

Receiving chemotherapy is a very peculiar experience. It is not, however, a stressful experience. I have always had a chemo companion and I sit and eat, drink, read, and try to be as merry as possible as the chemo drugs go in.  You can feel the drugs as soon as they enter your system. They spread around your body with a creeping, painful sensation. The pain is not acute but you are definitely aware of the drugs. They also immediately destroy your energy levels. It is like someone has pulled the energy plug and you have to retreat to the sofa and just relax.

After 4 cycles of ABVD I had a PET Scan to assess how the treatment was working. My lovely and fantastic (in fact I cannot state enough how great she is) consultant Ann was very pleased with my progress but there was still one nasty patch of live cancer evident under my left arm pit. I think she could hardly believe how well I had done considering in mid July (at the point of the first PET scan) I had the cancer all around my body. Regardless of the progress however, the fact that I still had one patch of live cancer cells meant that we decided to change my treatment to a new treatment called BEACOPP.

BEACOPP is unfortunately a bit like ABVD plus. http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/beacopp. In essence they keep all of the drugs that I had been receiving with ABVD and then just add some more. This means it is more intense in both the effects and the time involved. The first thing I said to Ann was ‘I’m mainly sad because I think this means chemo is going to cut more into my social life’. I was wrong about that however as it just means I have made more friends at the hospital and I really enjoy taking a chemo buddy in and having the chance to chill with them 1:1 – even if it is in the ‘chemo farm’!

What BEACOPP does mean is that I am now starting to lose my hair (further post to follow) and all of the Corney babies are likely to be cooked but really there are now so many other options and it will just be another hurdle to cross when the time comes. For now the only priority is to get me better and BEACOPP (fingers crossed, touch wood etc.) should hopefully be able to do that.

In terms of timetable, I now have 4 hospital days in week 1 of my cycle and then 2 hospital days in week 2 of my cycle. I see my consultant Ann every Tuesday at 5pm and then Wednesday, Thursday, Friday of week 1 and Wednesday of Week 2 are chemo days. This is all quite an increase on the 2 hospital days per 2 week cycle that I was previously experiencing with ABVD!

The number of oral pills has also increased and on top of this I have to have an injection every day of the second week of my cycle. The purpose of the injection is to stimulate my bone marrow into producing white blood cells to try and compensate for the damage to my immune system that the BEACOPP is causing. The injections go into my stomach and you are meant to be able to inject yourself. In reality, although the injections really do not hurt, I cannot inject myself as there is still a mental hurdle that you have to overcome to actually administer the injection to your own body. I know that if I tried to do it myself I’d end up spending hours on the sofa just thinking about it and then when I finally plucked up the courage I’d probably tense up so the injection would then actually hurt after all. So Mark has very kindly agreed to administer my injections and he does a very good job. My lovely friend Rhian also had a go last week as Mark was otherwise engaged.

It was all a bit bizarre, Rhian, Lindsey and I were sitting around with a cuppa and I offered the opportunity to inject me to the floor. Rhian, who grew up on a farm and has much experience of injecting animals, was more than happy to kindly oblige!

As for how BEACOPP makes me feel, it really isn’t as bad as I thought it would be. My chemo heavy week (week 1) is actually my best week as I am on six steroid tablets a day and they work wonders. I don’t really know precisely what steroids do but in general they work to reduce swelling in your body and it means you have lots of energy and the pain is greatly reduced. Ann hasn’t gone into detail about it but there are reasons why I cannot unfortunately be on steroids for the whole 2 weeks of my cycle. Steroids have so many side effects that you should only be on them when absolutely necessary. For this reason, when I am on less chemo (week 2), I am flying solo minus the steroids. This is when I get a bit more of a taste for what my body is actually like and this is when I am having to spend more time on the sofa enjoying the West Wing and working on knitting my dear friend Lou’s Baby Blanket.