Monday, 5 February 2018
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,
Sunday, 28 January 2018
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,
Friday, 19 January 2018
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,
Saturday, 16 December 2017
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.
Friday, 1 December 2017
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,
Monday, 30 October 2017
I don't really know where to start. Fatigue. Needing 11 hours sleep and exhausted by lunchtime. Pain. Nausea. Sounds a lot like early pregnancy. Except I don't get a baby at the end of it. Hopefully one day. Hope.
I can't even get the words out. I am so fucking fed up of it all.
Interferon. I have renamed it 'interfering in my life fucking shit wank pile of drugs'. So that sums it up really.
An application is being made to see if I can access an even 'nicer' version. I will know in about two weeks. I will also know if my leukaemic rate has gone up more or settled down in two weeks.
If it has gone up and I get access to the 'nicer' one I will try that. If it's gone up and I don't get access I go back to Bosutinib with steroids for my liver.
I feel I don't have the right to whinge. So many are going through so much worse at the moment.
I've lost me again and I hate feeling like this.
I have two more injections left of this interferon. Back down to 10 days apart instead of 7 and then a week off has been agreed. As a birthday present from my consultant.
Another birthday looming. I don't care about my age. I don't look, dress or act nearly 33. I am acutely aware I am still single. On my own. And all my friends are in very different stages of their lives. It's so wonderful with weddings and happiness and puppies and then no doubt babies. I do feel left out. 4 out of 5 of my core unit are also no longer in london. And with all this shit going on I am feeling it. I miss them so much. I'm floundering slightly. Not connected. Alone.
But I have others. I have my family. I have so much.
I just wish I also had my life.
And so with a heavy heart today. My heart aches for so many at the moment. And for me. Not sure how long it can go on for like this.
2 more injections. A check up. And then Christmas. I just need to get to Christmas and some proper time off. At least 2 weeks. I need it. Haven't had that since last Christmas. I will be ok. I will bounce back. It will all be alright.
It's just a bit shit at the moment.
With love and hope. Without that. There is nothing.
Saturday, 14 October 2017
Interferon. Pegylated Interferon. These were not words I enjoyed hearing or being told it was a drug I would have to try. The first Interferon was so rank that they re-made it so it wasn’t as bad for patients. As a sensitive responder hearing these words made me feel. Well, sick actually. If the first one was that fucking rank it was re-made, how the hell was I going to react to the ‘nice one’?!?!
So after going back onto Bosutinib which was a failure in terms of energy levels and my liver, pegylated interferon became the last drug to try.
I didn’t want to take it, I took the prescription because, well, I was told to, but I suppose I thought it was worth a try. All treatment boxes ticked. I’d given everything a go. A really good go. Making the transplant decision ‘easier’. I could say hand on my heart that everything had been shit.
So I started the interferon 6 weeks ago. I did read the side effects leaflet but pegylated interferon is the standard treatment for hepatitis so it wasn’t that relevant. I’m also on less than half the dose for hepatitis, so basically dismissed all the side effects.
The first 48 hours were fucking awful. I did google side effects on the first day and chemo care came up. I ticked 5 out of 6 boxes. Fatigue. Nausea. Flu-like symptoms. Lack of appetite. Pain. The only thing I didn’t have was a sore injection site. Oh yes, I have to inject myself. That doesn’t bother me, I’ve done it before. 10 years ago for IVF stuff.
It then began to get better. The only side effect that went completely was the flu-like symptoms. But everything else was sort of bearable. The fatigue was pretty shit. But I had committed to a month. I would give it 4 goes and see how it was.
Check up after 4 weeks. I explained how I was feeling. My consultant was sad that I had reacted so badly to the dose. But I had started to feel a bit better with the side effects so I agreed to keep on going for a further two injections. My consultant said that she would drop me down to every 10 days, and suggested that I inject at night so I slept through the worst 12 hours. I couldn’t believe I hadn’t thought of that!!! What a fucking idiot. Which is exactly what I said to her! That I’m the fucking idiot, not her!
She is also on a mission to find out if anyone else is on less than 10 days on half dose and how they are. She is very reluctant to push me up to full dose. Thank god.
So. How have the last couple of weeks been? Better. Much better. The leg pain has really subsided. The nausea is still there but no way near as bad, and the fatigue? Well. Today hasn’t been good, but I have had a busy week. I have also been good at getting more sleep over the last week. An 11 hour night one night and a few 10 and a half hours. It makes a difference. Not sure how sustainable it is though, to need this much sleep for the rest of my life.
But all in all, I feel better. I have a day or two of feeling good after 7 days before the 10th day when I had the first 10 day break between injections, although, if I think about this 10 day cycle, that should be today. Last week, day 8 and 9 I definitely didn’t feel the drug as much, but today is day 8 of this cycle and I feel fucked. Maybe it was doing nothing all last weekend that made me feel better. Actually thinking about it, last Saturday I didn’t feel great. Ok, I’m not over analyzing too much. Overall, fatigue is less. This week, I was Peer Reviewing a hospital on Thursday so have been working today and I am exhausted. Haven’t felt like this all day since I was on interferon weekly.
So. Monday is the day. I get my latest Leukaemic rate result back. To see if everything was still under control after 4 injections. If it isn’t. Well. I’ll cross the bridge when I come to it.
If it is under control and have another leukaemic rate test done with 10 days between injections and it’s under control. And I am allowed to maybe go to injecting every 2 weeks, so I have a week of not so great and a week of much better. Well. I think I might have found the answer.
When I feel better like I did yesterday. It was a good day. A good week. Had some clients. Been asked to contribute to a pregnancy/mother website. Had amazing feedback from a talk I did at a corporate company. I saw my best friend who is over from The States. And we laughed and stayed out late because we were laughing. Well. Why would I risk this for a transplant?
With love and so much hope.