Saturday, 14 April 2018

Struggling

I feel horrific for feeling sad for myself out of others happiness. Life is a struggle at the moment. Shadowed by awful fatigue. Being exhausted before I even get out of bed. 

This has an impact. Makes you feel down. Happiness is so much harder when your eyeballs hurt and you feel like you’ve been punched in the face. So my internal chat darkens. I become full of self pity. Which I hate. And then self loathing. 

Why can’t I be happy for others? Why do I always then turn it into poor me?

So many things I want, that I don’t. Because I can’t. 

Some because of my own choice. Choosing to be self employed. Working to others timetables is almost impossible. Being at work for 9am and not finishing until 6, 5 days a week would kill me. Choosing to do something people see as a luxury rather than a no brainer makes it a challenge to get new clients. Choosing to live in zone one which is so fucking expensive, because it makes life so much easier as I can get to most places in about half an hour, but therefore have no money. Which also impacts on everything. 

I have to live on my own. I go to bed at 9pm most nights. I need, well at the moment, nearer 12 hours sleep each night. You can’t do that in a flat share. You can’t impose quiet and restrict others because you have to go to bed. 

And because I’m tired and really struggle with evenings. I don’t really see any friends. I just sit on the sofa on my own. And go to bed on my own. And that can be pretty tough. Especially when you are a tactile person and need and crave hugs and cuddles. 

There is wonderful news in my family at the moment. And all I can think is. It’s not fair. Why can’t it happen to me. What did I do that’s so wrong to deserve the life I have. And I hate that. I really don’t like myself for thinking like this. 

I’m 35 next year. This is not what I imagined. 

And for all of you who think ‘you’re SO young’. You can fuck off. I’m not. This is not what I want. Yet it’s what I have. 

I thought cancer has a lot to do with it. It impacts on everything. It scares people off. It’s like having a child that no one wants to take on. I can’t get rid of it. I’m tied to it. But maybe that’s just a part of it. Rather than the reason. 

I don’t blame cancer. Then I would be blaming my body. Maybe I should. I don’t know. There is obviously something fundamentally wrong with me. Maybe I think it’s cancer that’s off putting as that’s an easy thing to focus on. Maybe it’s just me. 

So a rather self indulgent whinge about ‘poor me’ who is utterly fucked off with life at the moment. 

Wednesday, 21 March 2018

Words for MPs

I have lived with blood Cancer and been on oral chemotherapy every day since I was 22. That’s 11 years 2 months and one day.  I will live with it for the rest of my life. Nearly feinting twice in a week led to a blood test on Friday 19th January 2007, in the morning, and that night, a phone call from the Western General in Edinburgh and enough information given to me to work out they thought I had cancer to get me to  go to the hospital, as I wanted to call  my parents who were over 400 miles away and tell them I had cancer, before I went in, rather than a stranger from the hospital do it.  I was in my third year reading History of Art.

Chronic myeloid leukaemia. Old man’s cancer. To be female with it and so young is rare. Daily oral chemotherapy keeps me in remission. Keeps me alive. Causes sever chronic fatigue. So much so that a stem cell transplant has been offered for quality of life reasons.  I am yet to make that decision.  In the mean time I am at the hospital fortnightly trying different drugs, when they are granted rather than denied, and different dosages to see which lets me at least try to live my life normally.

The main problem about living with a blood cancer and having my hair is that no one gets it. So much of the ‘normal’ cancer care and ‘normal’ treatments don’t apply. As a chronic cancer patient I fall through the gaps in so many places. I have never, for example, had an HNA – they didn’t exist when I was diagnosed, or filled out the national Cancer survey. And so many surveys around cancer simply don’t apply to chronic blood cancers.

When I was told about the Cancer recovery programme by Bloodwise and mentioned it to my consultant we both thought how great it sounds. Yet I am not eligible. She knows nothing about it. I will at this rate never come off treatment. I will never be cured. Very clever and amazing research has developed these magical chemotherapy pills that yes, have saved my life, but because I am a sensitive responder, so young compared to the majority of my clinic (in Edinburgh where I was diagnosed I called my clinic gods waiting Room), being exhausted all the time is an issue. I need the same amount of sleep as a toddler, between 10-12 hours just to get through the day, that doesn’t include the evening!  And that’s just not realistic when trying to run a business and have a ‘normal’ life at 33. So I don’t.  I either work or see friends, I can’t do both.  And the weekend is mainly sofa based to rest and recover from the week so I can do it all over again.  So my social life is basically non-existent. Due to these clever pills that for so many are ok and for those that aren’t, we learn to life with side effects and try to manage them the best we can, it’s almost like ‘box ticked’ with treatment and care. Don’t get me wrong, there is new research being done but it’s years from being in people and not mice. My current consultant is amazing, and I’ve told her she can never retire! I genuinely don’t know what I would do without her. And she does her best to think of ways to let me live my life. But I don’t. Fortnightly hospital appointments after 11 years is very unusual. Still trying to find the right drugs that I am ok on. For people like me, who look fine, who aren’t in -patients, aren’t on intravenous chemo or radiotherapy who don’t fulfil the ‘correct cancer patient criteria’ can really struggle with life. And it’s for people like me who in a way need support more than others as we don’t meet the criteria for other help available. We are too well for the criteria on the forms and our answers to questions aren’t right as they don’t take into consideration what it’s like to live with a chronic blood cancer.


I get out bed every day because I refuse to give in.  I am exhausted before I get out of bed every day.  Every day is a mental battle get things done.  Living with an invisible illness like chronic myeloid leukaemia has helped make me, me.  And I wouldn’t change that for anything.  I would however, like to change the side-effects of treatment and to have an end date in site.  I would like to no longer be a blood cancer patient without having to risk my life with a stem cell transplant.  I ask you today from the bottom of my heart to help get my message back to the decision makers.  To let them know that it’s not just the sexy cancers like Breast that need all the focus.  It’s those that no one knows about.  Like CML . That never go away and are never cured.

Monday, 5 February 2018

Fed up. Again.

Nothing particularly has changed recently but I am feeling fed up. And it culminated yesterday on world cancer day. It really fucked me off. And I don’t know why. Well. I probably do. For most they might only experience one or two during their treatment. It’s my 11th. 11 fucking years of cancer. 

And I saw posts of people suggesting what to do. Take people food. Give them a ring. See how they are. Well really. That should be happening regardless. Why should one day a year flag that a friend or family member might need you. And I know I’m being a complete twat about this. So many don’t know how to react to a cancer diagnosis and don’t know what to do. I know I have become so blase about it all. About death. About the shit side effects. Of how treatment impacts on the body. And yes. I am even more aware of the fact that this hasn’t been my ‘journey’. I am ‘lucky’. What’s a pill or two a day? 

Compared to some. It’s nothing. Steroids are making me fat and spotty. It’s pissing me off. Ridiculous I know. Just so fed up of it at the moment. 

I think it’s when I dip like this that I miss my girl gang the most. Those who are now all over the world and no longer in London. And I’m shit about organising to see those who are here as my focus in the evening is the sofa. And that’s boring. For everyone. 

Still waiting to hear on other drug options. There is the possibility of another new pill alongside the new interferon. Hope....

Luckily my liver is fine today so my steroids have been dropped. Back in two weeks. 

I just need more sleep. A fairly busy week last week and too many nights that weren’t 10 plus hours sleep. This is a phase. It will pass. It always does. 

And it’s ok to feel like this occasionally. It’s ok to be pissed off that my life is not my own. It’s ok to feel like there is never any acknowledgment to how hard it is to live with a chronic cancer. It’s ok to feel fucked off that because I have my hair it’s assumed everything is ok and my life is easy. It’s ok. It will be ok. 

Just feel like I have a bit of a hole in my heart at the moment. But it will mend. It will be ok. 

With love and hope,
XxX

Sunday, 28 January 2018

Cancer On Board

My little charity. 

Nearly a year ago the paperwork came back from the charities commission or whatever its called to say that Cancer On Board did deserve charitable status and what we are doing is worth it. I say we because there are 3 of us who are trustees and have been running it all so far. With help along the way of course. Lovely lawyers who did all the paperwork pro bono, and some of my networking contacts for doing the website, the logo, and the printing of the printed cards and a banner for very little or no money. And a massive thank you goes to a friend of James (the person whose idea it all was) who has helped with design, words and the overall feel of the charity. And everyone who has been kind enough to give donations. Without these people, it wouldn't be where it is so far. 

On Monday night we had the official launch at the House of Lords. A massive thank you to Lord Cashman for hosting the evening and taking the time to be there and speak.  As a trustee and a chronic cancer patient, I spoke about the difference the Cancer On Board badge has made to my life. And I can't really put it into words. I now don't worry about getting on the tube and being able to sit down. This is huge. Massive. More than a relief. It's changed my life in London. It's had a bigger impact than the TFL 'please offer me a seat' badge. The two combined are a killer combo meaning that I always get a seat. It might take a stop or two, but I always get one. (Unless I'm feeling ok and I hide them as I can stand/lean against the tube wall etc until I get off). I can't really remember what I said in my speech. I made notes but in true me style I didn't really follow them... but I did manage to get through without crying or swearing! The launch was only 3 days after my 11th cancerversary and with my mother standing right at the front in my line of sight I didn't know if I would make it through or not. But I did. 

The launch, I think, has been a success. Mentions on social media from other cancer charities and cancer bloggers. Verbal support from various members of the Houses of Parliament. But I suppose the main thing for me was to give some exposure to looking healthy and living with a chronic blood cancer that no one knows about. Cancer is often hidden. We are bombarded by the media and cancer charities of photos of people with no hair, eyebrows, eyelashes and attached to tubes. For many, yes, this is cancer. But for so many it isn't. And if our Cancer On Board badges help to educate the general public about this. Well. Then my work is done. 

I have now lived with cancer through my 20s and early 30s. It's with me every day. I take chemotherapy tablets every day. But I also live every day. And that's we want to do with our badge. To make living with cancer during treatment just that little bit easier. 

If you want to know more/get in touch/get a badge/or give a little donation (only £1.50 gets a badge in the post to someone) please go to www.canceronboard.org and follow us on Facebook/twitter/Instagram. Just search Cancer On Board.

With love and hope,
XXX

Friday, 19 January 2018

11 Years Today

11 years. Can't quite believe it. I haven't cried this week. That's strange. Normally in the lead up I'm a bit emotional, weepy. Not this year. And I think I only cried once over Christmas! Maybe I managed 10 years and now it's just another tally on the sheet. Becoming less relevant.  I don't know. 

Or maybe because the last couple of weeks since being back in London has been really busy. No time to think and dwell on me. Meetings and clients and research and admin has definitely dominated. Which is good. The way it's meant to be. 

And I had just over 2 weeks off at Christmas. A proper rest. I'm not completely destroyed by fatigue at the moment. I have hope with treatment options. Waiting to hear on a new interferon. My consultant is outstanding. She has carried on over Christmas to track down the right people to speak to. A year ago, two years ago, three years ago (you get the picture) I had no treatment hope. I thought how I was was it. And in the last year I have been offered a transplant and interferon. So far the interferon hasn't been great or worked on my resistant CML. But. It's not. Well this is your life and make the best of it. (Jury is still out on transplant). 

I can't really believe another year has gone by. Time is going by so fast. 

So I don't really know how I feel today. I suspect I've just been too busy to focus on it or realise it's here. 7.30 tonight is the time. The time the phone rang. And my life took a turn I never expected. I'm not angry about it. I get fed up and fucked off about things from time to time. Exhaustion isn't fun. But. So many positives. Tonight I am seeing wonderful friends that I have met because of cancer. 

I love my job and what I do. Because of cancer. 

I know how much I am loved. Because of cancer. 

I know who I am and love who I am. Because of cancer. 

And I'm getting to the point where I think I am who I am. Because of cancer. 

And would I change it? No fucking way. 

So today. 11 years after getting my blood cancer diagnosis of Chronic Myeloid Leukaemia shall be a happy day. Because I can't enjoy my life and be happy if I'm not happy about cancer. 

With love and hope,
XxX

Saturday, 16 December 2017

Cancer and I

It's been circling in my mind so I am doing what I do. Writing to get it out. I don't want this to seem all me me me. But of course. It's going to be all me me me. 

I've been becoming more and more aware of it. So many social media accounts with thousands of followers because the person had or has cancer. I see them in my work social media a lot. Another person who talks about their diagnosis on their work website. Another person who is so brave/strong/amazing etc because they talk about how shit they feel on their work social media because they had cancer and got the all clear 5,6,7, 10 years ago. Another person who gets all this recognition. 

Maybe that's what fucks me off. It's the whole 'what about me' thing that I have. I was going to say it's a problem. Not sure that's the right way to explain it. It's definitely a middle child syndrome. 

I made a conscious decision when I was diagnosed nearly 11 years ago not to make cancer the only thing in my life. Maybe that's easy for me as a chronic. I was never going to die. I just take these pills every day. But I also have no end in sight. I don't know if I will ever be free of cancer completely. I don't know. 

I could be that ill person. I could give up and not get out of bed. I don't. 

Maybe that's what this is about. The fact that I battle with every day. Not with cancer. Let's get the straight. It's never been a battle. I will not battle with myself. With my blood. With my life essence. 

Life on the other hand. Well. That's not so easy. 

I work and have worked so fucking hard to get to where I am. I'm not saying others don't by the way. I made a decision not to have cancer as a part of my work. It's not really relevant to it. It's not why I do what I do. I do sometimes, and the sometimes has turned into often recently, wonder if I would be more successful, have more of a following on social media if I had 'cashed in that card'. 

I haven't had a break since my treatment started in life to just focus on building a social media following or making a name for myself and cancer. No time to write articles and then follow up and follow up and follow up with editors/publications etc to get my pieces published. I haven't had a holiday since last Christmas. The most I have had off this last year is 5 days over a bank holiday weekend. 

Making cancer your full time job is a full time job and I decided I wasn't going to do that. It's not all of me. It's not all of my life. 

Maybe my life would be easier if I had. 

I've had to increase my chemo dose. I'm exhausted all the time. I'm in bed at 8.45 on a Saturday night. I can't keep up pace when walking with my parents who are, well, over 55! 

So I don't really know what this is about. Maybe I should stop smiling and say 'ok' when people ask how I am. I'm not really. Not at the moment. 

And I know that having over 10,000 followers on Instagram wouldn't make it any better. I know that really, when you strip is all back, that's all a load of bollocks. I know this really. Deep down. It's just sometimes so fucking hard when you work so hard and it could be easier if I went on about cancer with my work social media. 

But then. I haven't. So I will never know. I should just make my peace with what I have chosen to do and ignore the rest. 10,000 Instagram followers means fuck all in reality. They aren't there for you when you need them. They don't send you photos of Facebook memories from 10 years ago. They don't laugh hysterically when you say you were only wearing 6 layers today. They haven't been there for you through it all and are still there. 

So really. Why the fuck would I want 10,000 Instagram followers. But some more clients would be nice. It's getting there. It's just. Well. Life is a bit challenging at the moment. 

With hope. Always with hope. 
XxX

Friday, 1 December 2017

Bosutinib round 3


Well I thought it was time for a catch up.  Been back on Bosutinib now for nearly 3 weeks – 3 weeks on Monday with very low dose steroids.  I can’t remember what they are called but they are an amazing colour!

Good news – my liver isn’t fucked this time and the steroid dose is so low I don’t notice it in any way.  I’m also now on an even lower dose than when I began so that’s also good.  I also don’t feel miserable which is also good.  I generally speaking, feel happy and positive which makes a nice change!  Although, to be fair, I felt good on interferon every 10 days.  It just didn’t have an impact at all on my (resistant) CML, so I should probably just forget about that being a nice drug option in terms of how I felt.

So how is Bosutinib?  Well, it took a week at the lowest clinical dose for an impact to be noticed on my energy levels.  That was on 100mg a day.  After that first week I’ve been on 100mg/200mg alternating and I do feel tired.  I have been getting shooting pains down my skull which is my body saying, for gods sake GO TO BED!  I am trying to get 10 hours sleep a night.  I don’t always succeed though.  My legs don’t hurt which is good, I was getting a bit fed up of leg pain with interferon weekly.  So that’s good. Trying to focus on the good.

There is an application in for the ‘nicer’ interferon that isn’t licensed here, but it is in Europe.  The decision lies with a panel of people at the Hospital who aren’t haematologists, who don’t understand CML, who don’t know me and don’t really care that I am always on at least half the standard dose so I am a cheap option compared to others.  Waiting to hear if they say yes….

I’ve gone off the idea of a transplant.  Really don’t want to take the time out of life now for it.  Maybe being tired but happy/ok with it will be bearable.

I don’t know.

I am knackered now though.  Cancelled tonight’s plans.  But it’s been a busy week.

I suppose I just need to see what happens…

Back at the hospital a week on Monday.  Might know then about the other interferon.

With love and hope,
XXX