Declining a Trial and Leaving Hospital

Leaving hospital 

10 years ago today I was suddenly told I could go home in the afternoon. After being told I could potentially be in hospital for months, this was a huge shock. And I didn't feel ready to leave. 

I knew the nurses. Got to hang out with Doctor Dave (who I know got into a lot of trouble from the nurses because of this!). George my drip kept me company. I had friends come and see me all the time. I also had time on my own to just be. An en-suite room. TV, DVD player and a little fridge. It was warm. Mugs of tea appeared. Why would I want to leave?! It was my little bubble of safety. 

My consultant wanted me to take part in a trial. Put huge amounts of pressure on me to take part in this trial. I was young. Rare. Unusual. Interesting. 

I was never told I could drop out of the trial if I wanted to. Critical knowledge to have been told. 

Every day my consultant would come in and ask me if I had decided yet. I wanted my parents to decide. They couldn't. I was an adult. It was my decision. Even though I very much felt like a child again. 

I was told about the trial. (Bearing in mind I was reading History of Art. I knew nothing about how clinic trials worked. I didn't have the knowledge I have now). Normal treatment that I was going to get anyway- chemotherapy pills. Double the amount of normal treatment. Injecting myself with a drug. 

I asked if I could pick the option. No I couldn't. 

Being told I had cancer and then 3 days later being told I might have to inject myself with drugs was just too much. So after debating for 5 days and for feeling so incredibly guilty for saying no (the nurses were amazing at helping me and telling me it didn't matter if I said no) I was then kicked out of hospital by my consultant. Who never liked me from that moment. My parents witnessed the change in their behaviour and attitude towards me. 

Not only did the thought of injecting myself put me off (ironically I had to 8 months later to have eggs frozen) but I asked what happened if I started to show side effects on the double dose option. They said they would drop me down to normal dose until I was ok and then increase the dose again. 

Thank fuck I said no. The standard dose was too much for me. I was so unbelievably intolerant to it and my consultant ignored me and my pain and how I felt. Because. Research said I wouldn't feel like that. 

I dread to think how I would have been on the trial on double dose or injecting interferon with them ignoring me and how I was feeling. 

I have a lot of anger towards that fucking awful egotistical consultant who couldn't have given two flying fucks about me. All they cared about was that fucking trial. 

So today. 10 years ago. A rather bewildered and let's face it, scared, me was unceremoniously kicked out of my warm bubble of safety after being told the day before I could be there for months, back to the cold reality of 'normal life'. 

And remember Katherine, you are so lucky for being diagnosed with CML. Your life will be exactly the same and even better than it was before! You will never know you were diagnosed or taking chemotherapy daily....

What an utter twat. 

With love and hope and thank god they are now retired 

XxX

My 10th Cancerversary

I genuinely don’t really know what to say.  I just re-read the post I did on my 8^thCancerversary as Bloodwise very kindly tweeted it and it was far more profound than anything I can think of to say today.

As always, the lead up is worse than the day.  Yesterday was a bit tricky with unexpected tears in a networking meeting that wasn’t exactly what I had planned. This week is always a very vivid one. Remembering how I was and what happened on the lead up to today. A blood test. A series of phone calls resulting in my diagnosis. And going into hospital. Becoming a cancer patient. 

So today. I don’t know.  10 years.  It’s completely surreal really. I never thought I would still be on treatment now. Or that I would still be single. Or that I would be a Naturopathic Physician. That last one I am fucking happy about by the way. I am actually very pleased I'm not a lawyer as I was going to be!

Today has been a happy day. A bright blue sky and the sunshine has helped. A day so very similar in weather to today 10 years ago. I walked across London Bridge this morning and it was beautiful. I was immediately thrown back to walking over North Bridge in Edinburgh loving the bright blue sky and sunshine with the castle to my left and Carlton hill to my right. Phoning home to tell my father I had been to the doctors and that I'd had a blood test. Having absolutely no realisation or expectation of what was going to happen. 

I have had so many wonderful messages today. Waking up to one from my best friend who lives in New York made me smile. I'm sad she isn't here. She wasn't in Edinburgh when I was diagnosed as she was having a year out in Italy. So weirdly, as much as I want to see her, it's fitting she isn't here. 

And then my tattoo this morning. My angel wing. It's there. And I love it. To remind me I'm not alone. I'm watched. I'm loved. I'm looked after without knowing it. 

Seeing a friend at her cafe. 

So much laughing. Today has been about laughing and smiling. 

Which is how it should be. 

Yes, there have been many fucking awful moments over the last 10 years. Challenges I have had to face on my own, and still do. Things are not always as easy as my smiling face and throw away sarcastic comments would show. 

But. 

So much good. 

And today. I am once again shown how much my family and friends love me. 

And that kind of makes it all worth it. 

So with love, hope and the angels that watch over me. In disguise as people I know or those I have known. 

XxX

The Lead Up

Well my lovely bloglets,

Some thoughts have been tumbling around my head so I thought I would sit down and write.  As I do.  To get them out.

6 days.

In 6 days 10 years ago, possibly right at this moment the phone rang and a chain of events happened that I never thought would be.

Cancer.

This week is a funny one.  It's one that I remember so vividly.  Even though it was so long ago.

I don't really know what else to day other than that.  Today has been good, well after I got over the foul mood I was in when I woke up.  Exhausted.  Didn't want to go to a meeting.  But this afternoon I went to the doctors to say I didn't want to flu jab and really made the nurse laugh.  Which made me smile.  And then I went to see one of my wonderful friends.  So even though the fatigue is there, it was under the surface enough to make today a good one.

Seeing friends.  This is my aim for the year.  Mustn't withdraw and retreat like I did last year.  Business being better helps.  I'm still working fucking hard, but the pressure is different.  Not quite so panicked about how the fuck I'm going to pay my rent.  Which frees up head space to see people.  Who make me laugh and smile.  It's good.  I need more of that.

And yesterday I was with my niece.  Being an Aunt has to be nearly the best job in the world.  I love her so much.  And when I arrive there's a massive 'Katie!!!!!!!!' and she's happy to see me and we laugh and she makes me laugh and I get toddler cuddles and kisses.  And she wants to hold my hand. The baby soft skin she still has and the crease where her wrist is.  So grown up now, but there is still echoes of baby in her.  Part of me never wants her to get bigger.  Sleepy warm cuddles after she wakes up from her lunchtime sleep and playing hide and seek with her standing in front of me saying 'find me Katie, find me, I'm hiding'.  Although in reality she is visible, right in front of me, but I pretend not to see her and go 'looking for her'.  Precious time.  All the memories.  It's magical.

Next Thursday is a big one.  I never thought I would still be on treatment after 10 years.  I thought I would have got to the place where I would be able to trial coming off chemo and staying there.  Monitored, but chemo free.

So I don't know.  So many thoughts.  So many emotions.  But I'm here.  I'm still here.  Moving forward.  Always.  Nothing will stop me.

With love and hope,
XXX

Feeling Grateful

Well my Bloglets,

I wrote recently about working for myself and the challenges of setting up your own business and doing something that very few have heard about or understand. 

So today I thought I would share with you (with permission) an example of what makes me persevere. What makes me get out of bed. What has meant I haven't given up. 

I had a patient recently who had IBS and psoriasis which so often go hand in hand. They were also pregnant and had a hormone imbalance that was affecting the baby's growth meaning the baby was small. 

Whilst they saw me we did a lot with diet, as well as things to do at home to reduce inflammation and stress; and I also gave regular reflexology treatments. I do at this point have to flag how great this patient was at doing everything I suggested. 

They had regular blood tests and scans to monitor the baby and after a few sessions with me they were told their hormones were fine again and that the baby's growth was normal. 

They ended up having a very complicated birth and it was touch and go for a while with the baby. I am so delighted and overjoyed and overwhelmed to say that the baby is still with us. And all the NHS staff said it's because the baby was no longer small and the hormone balance had be re-addressed. If the baby had been small it would be a terribly tragic story. 

I am so grateful to my science degree and regardless of how intuitive I am, and how much I listen to my 'gut feeling' I ALWAYS look at the science and clinical research and what the body is doing at a biochemical level. 

I am so grateful that I persevered and completed my degree and didn't drop out. 

I am so grateful that this patient came to me and trusted me in their pregnancy. Trusted me with the health of them and their unborn baby. 

I am so grateful they were compliant and did everything asked. 

I am so grateful they came to me and I was able to save that little baby. 

I am so grateful that they will all be together this Christmas. 

That baby will always be my little miracle baby. 

With love and hope,

XxX

Two Years of being a Naturopathic Physician

I graduated today two years ago.  Two years ago I started my business.  I had this plan of direction that I had devised during a module at Uni called ‘Starting Your Practice’ and I was told that it was achievable and the time frames were right etc.  I have over the last two years discovered that the lecturer who taught us, in actual fact, had no fucking idea about the realities of starting your own practice and all the advice and the essays and research done in that module was a complete waste of time.  It has been hard letting go of that as it was the last module to be done, with huge assignments that took hours when I was at breaking point, and to realise it was all a load of shit.  Well.  That was hard.

The first year was expensive.  Getting ready for being in business and everything that that entails.  Paying for things like literature to be printed, website made, domain name bought, insurance, multiple regulatory body payments made so I could register with the CNHC as part of the elite in this country, buying equipment for patients and god knows what else all adds up.  I also did more training after I made the decision to specialise in mother and baby so I’m safe to look after them and to be able to offer specific treatments for them. 

I’m now ready for clients.  I can see how I can be of benefit.  I know I am well qualified.  And then the realisation of how the hell do I get them?  Why don’t more people want to see me? Why don’t they understand how I can help and spending the money with me will be so much better than what they are doing at the moment?  Why has someone said they want to see me and not book in?  At what point do I become harassing rather than nudging to see if they will actually book in?  Where are the referrals they said they had for me?  And then.  I got bullied out of the flat I was living in and had to move back to my parents outside of London. 

It was weird.  I didn’t really tell anyone I had moved in terms of all the networking I do or when meeting potential people to do collaborations with etc, but it was like the Universe knew.  In my first year I had the grand total of 4 Naturopathy patients.  Four.  FOUR.  I was told that I would easily have one or two a week.  A WEEK. 

I think it was around September 2015, so 10 months in that I had a complete wobble.  Was I doing the right thing? Had I made a massive fucking mistake?  Should I just go and get a ‘proper job?’.  Having to defend, or rather, feel like I had to defend why I had so few clients and didn’t work part time for someone else to at least have some regular money coming in. It’s so hard when you have people who love and care for you giving you business advice when they have only ever been employees, because in the nicest possible way, they have NO idea what it’s like to a) set up your own business on your own and B) have a job that no one knows what it is.  Even them.  But I’m determined and I did not accrue all that debt from another degree, work that hard, nearly destroy myself in the process to become a civil servant or similar.  Obviously there’s nothing wrong with being a civil servant… I hear the pension is very good!

So I kept going.  Doing just what I do.  I don’t have the energy levels to do one thing for half the week and then do everything I need to do for my business to get it going the rest of the time.  No one quite understands, unless they have it, the impact of chronic fatigue on working full time, every day, no breaks, because that’s what happens when you are self-employed.  When it’s your name.  When you are accountable to no one but you.  And if it fails, you fail.  I fail.  And that is not something I was prepared to do.

I joined a coaching programme for a year – the first 6 months were brilliant and really helped me, the second 6, not so much.  But at least I tried and I gave it a shot. 

And then I moved back to London.  A very generous loan from a family member meant that I could come back as they leant me 6 month’s rent so I could get back on my feet.

And then it’s like something happened.  Well something did happen.  I began to have clients.  People booking in.  Referrals have started.  Ok, so I’m not earning big money, but I have a fairly constant amount coming in every month.  The networking that I have been doing for the last 2 and a half years is really beginning to pay off.  I’m getting good results with those who are in the groups.  They are beginning to understand what I do and see how it’s of benefit.  They don’t raise their eyebrows when I say how much I cost. 

I’ve joined a co-working space.  This has saved my soul.  I’m surrounded by people who have started their own companies.  Some like me are fairly small and new, others are much bigger with staff.  I now go to work and as much as possible I leave my laptop in my rucksack when I get home.  Home is now home and chill.  Ok, I might do a fair amount of emails on my phone and social media stuff, but if it’s on my phone it doesn’t feel like work so much.  And yes, I am often at work.life the co-working space on a Saturday and Sunday doing admin or patient research or whatever else I need to do but I can mooch in after a really lovely 40 minute walk down Columbia Road and Broadway Market to London Fields or it’s 7 minutes on the train from Liverpool Street.  And I can chat to people and have that interaction that I didn’t have when I was working from home.  As my energy levels are as always a bit of a challenge, I would often work all day at my laptop on the sofa, speak to no one other than my parents on the phone, then stop working around 8pm.  Watch something shit on catch up, still on the sofa and then go to bed.  This is not healthy.  So whilst being here, at work.life is an added outgoing that is slightly stressful, the people I meet here make it worth it. I’m also doing a monthly massage clinic and talks on what I do so I’m sure it won’t be long before I get a few clients from here.  And they have fun events with great independent companies and food start-ups and everything that I’m into.

A few weeks ago, and ok it’s a first so far, I earnt £700.  (In my first year I think I earnt about £1700).  I’m sure it won’t be long until it’s a regular amount coming in.  Also in the last week I have been asked to write a monthly blog post for a mother’s website and they are also going to feature me and my services.   I’m also launching a City clinic with my mother and I’m sure it’s going to do really, really well.

So the last two years have had many many lows and I’ve probably cried at least a paddling pool’s worth of tears.  Wondering how the hell I’m going to pay my rent, the rent for the clinic rooms that I have, the heating, for food, for supper on the rare occasion I go out with my friends.  Wondering when I’m going to get a break and see that it’s all been worth it.  But.  Over the last 6 months the highs have definitely started to outweigh the lows.  And I am so glad that I stuck with it. 

Being self-employed, as a Naturopathic Physician, is the hardest thing I have ever done.  But it gives me the freedom and flexibility to co-run and attend monthly networking meetings which have made my business what it is, and to also help my sister out with childcare.  I get to spend two or three days a month with my niece who is now two and a bit.  Those days are so precious to me and no matter how shit everything is.  Making her laugh and getting cuddles from her.  Well.  There are no words. 

I also recently had a pregnant patient with IBS which they had had for 17 years and really struggled with it.  After 6 sessions they said I fixed them.  To see a parents face relax and light up as their baby changes from screaming with a colicky tummy to smiling as I gently talk them through the tummy routine in a baby massage class.  To be sent photos of new born babies after you have looked after both baby and mother during pregnancy with reflexology and massage.  Well.  What else would I want to spend my time doing?!

So this is the most incredibly long brain vomit about my second work anniversary, and I hope in a year’s time, my business has done the same amount of growth as it has this year, if not more.  And if you don’t know what a Naturopathic Physician is:

www.harleystreenaturopath.co.uk

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