Heavy heart

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. 

XxX

Interferon

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.

So.

Brilliant.

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 10^th 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.

XXX

World CML Day

So what does this mean? Probably not a lot to most. Most don't know what CML is. Chronic Myeloid Leukaemia. The translocation and therefore genetic mutation of chromosome 9 and 22. They don't know why it happens. It's not a lifestyle cancer. It just happens. It's rare. Only 4,800 people live with it in the UK.  Because it no longer kills those diagnosed with it, it gets very little attention from the press or (most) charities who prefer people who look ill. Harsh but true.  Much better to have a photo of a bald person with lines going into them than someone like me.  Tugs on the heartstrings more.  Gets people to give money.  I get that.  It doesn’t stop it from fucking me off.  The photo is me today.  No makeup.  11 hours sleep.  Still got fucking massive bags under my eyes.  I don't look like a cancer patient do I. Way too much hair, eyebrows and eyelashes. I'm wearing one of my Bloodwise (go to bloodwise.org.uk and have a look.  They are such an AMAZINGcharityy. I heart them).

When I was diagnosed, over the phone, I hadn’t been feeling quite right, not ill, but not right.  Weight loss which for me was a massive bonus!  Down from a size 14-16 to an 8 in around 6 months. Fucking BRILLIANT!  Hair coming out in handfuls was a bit concerning but the thing that made me go to the doctor, or rather friends insisting I go, was nearly fainting twice in a week.  I don’t faint.  I was gearing up for a collapse.  Not surprising when I had 112,000 detectable Leukaemic cells in that first blood test and my white cell count was something like 700.  Normal range is 4-10.  They – the hospital, were astounded I was walking, talking and fully functioning.  It also explained the exhaustion and complete lack of concentration I’d had for the couple of weeks leading up to that phone call.  I could also feel my spleen...  Thinking about it.  My body is pretty amazing in how resilient it is and kept going even though I was very close to being critically ill.  I was not far from the ‘blast phase’ which is very dangerous in CML and well.  I might not be here today if that had happened. It also explains why I was in my own room in hospital, not on a multibed ward.

I’ve been through a lot of shit over the last 10 and a half years with my body, but you know what, it hasn’t really ever let me down.  I’ve not managed to get to that magic 0.000% with the Leukaemic rate to see if coming off treatment is a possibility.  Very few ever do.  A transplant would mean that would happen.

My counts are now normal with my white cells, and my leukaemic rate is now 0.03% and I have around 23 detectable Leukaemic cells in the blood test they do. 

It's a funny day today. I didn't know it existed until a year or so ago. Having said that. Time is a strange concept at the moment and what feels like yesterday could have been a year ago. So maybe I have known about it for longer. Today might be my last CML day as a CML patient. If I do have the stem cell transplant, this time next year I would be cancer free. No longer have Leukaemia in my blood. No longer be on the drug regimen that has impacted on my life so much over the last 6 years making my life pretty miserable. I think the first 4 years, actually no, most of the first year was horrific. I think I’ve had 3 years of it all being out of the last 10 and a half, but I’m not entirely sure.  Hard to remember.

But. 

It's ‘only’ a been pill. Oral chemotherapy. It could be worse. I'm 'lucky' I have an 'easy' cancer. And I might be risking my life in order to no longer have it because it's such a walk in the park… 

This wasn't meant to be a rant. I don't hate my cancer. I don't think 'fuck you cancer' as so many do. I can't and won't hate myself. When it's in your blood, that's what you would have to do. Hate all of you as your blood goes everywhere.  And I absolutely refuse to think about myself in that way. Side effects of treatment have been pretty shitty, yes, but that's not the cancer, my cancer. That's the treatment. 

I have met so many amazing people. I have done so many amazing things. I have been given a voice since my diagnosis and all of this I would NEVER change. 

I do wish I wasn't a 'sensitive responder'. That I could fully live my life AND take the daily treatment. Which is now a weekly injection as the oral chemo annihilated me too much. All of them. I tried all 5 options available. A couple of them twice. The problem is that there isn't much funding given to CML anymore because of these amazing pills that basically save everyone now, when pretty much everyone used to die. Another problem with these amazing new (potentially very toxic) treatments for Leukaemia that have been in the press so much recently is that they work on proteins on the cell surface of the cancer cells. With CML everything is on the inside of the cell so immunotherapy etc hasn't worked. 

I thought I was going to have a bit of a focus with this post today. To try and raise some awareness of CML. When you look fine, and in my case so much better than I feel, but aren't always. And if today is my last national CML day as an active CML patient. Well. That's pretty huge. It's my tenth one this year. Maybe it's a good number to end on. Think I've had enough of living with CML in all honesty. I think I now just want to live. 

With love and hope,

XXX

Blood Cancer Awareness Month

Words.  I don’t really know what to write.  I don’t really know why I am doing this other than a need to write.  September is blood cancer awareness month by the way.  Blood cancer.  Two words.  Covers 134 different types of diagnosis.  The 3^rd biggest diagnosis in the UK.  Combined, all the blood cancers together are the 5^th biggest killer in the UK.  By the way.  More than breast or prostate.  Not that you would know that.  Anyways.  This is not a rant about charities who use dirty advertising.

It’s also national CML day this week.  Should probably write about that.  Should probably write something happy and upbeat.  Feels like it’s been a while since I had a happy post.

Interferon.  Last option before I have to decide.

Do I risk my life?  Do I potentially make myself worse?  Do I decide in two weeks that enough is enough.  What is enough?  What should I tolerate?  What is normal?  What should I be able to do each day?  It’s all so fuzzy.  Should every day be this much of an effort?

I don’t know. 

So far Interferon has been pretty rank.  I got it wrong.  I thought it was an injection every 3 weeks.  It's not.  I'm on a half dose weekly injection that I do myself. The first week was fucking awful.  God I felt ill.  Exhausted.  Pain.  Nausea.  And now.  Nearly 3 weeks in?  I still hurt.  Still exhausted.  Still feel a bit sick.  But better than 2 weeks ago.

I’m so fed up of all of this.  A waiting game.  My consultant today.  So hopeful and when I started to list all the side effects I'd been feeling her face fell again.  Apparently, I'm not her heart sink patient.  For this I love her more than words can say.  I trust she was telling me the truth!  And I could hear the question in her voice when she checked I was on half dose.  I think full dose would annihilate me.

I need to go to bed.  I’m at my co-working space and I’m not entirely sure where I’m going to get the energy from to stand up and walk to the train station and get home.  I had 9 hours sleep last night.

Not enough.

So I know I should be happy.  Write upbeat things.  Because who wants to be with someone who feels like I do? Who dares ask how I’m feeling?  Because people don’t actually want to know.  Not really.  Not the reality of how I feel.  We only like to hear good things.  I’m the same.  I’ve basically stopped looking at social media because in all honesty, I couldn’t give a flying fuck about the majority of the things mentioned.  What people are complaining about.  So why should anyone care or read about my shit?

So I sit here.  Writing this.  Knowing that so many don’t actually want to read what I write about.

I have lost a kilo though, so that’s good.

I am so fed up of all of this.  I just want to know.  But no one does.  No one can look into the future.  So I’m back to the hospital in 2 weeks.  I have decided to stay on Interferon for 2 more weeks.  Two injections left.  I hope to fuck it gets better.  This is it.  The end of the road.  Out of choices.  Decide which is best.  Or transplant.  

Stem Cell Transplant.  3 words.  That could be the end of my life.  But.  They could also be the start of my new life.  My life where I can really live.  Or is this a fantasy thought that doesn't exist?  The pot of gold at the end of the rainbow.  I don't know.

So this is my nothing of a blog post.  Ramblings that mean nothing. So many questions and no answers.

I’m not miserable all the time by the way.  I do smile and laugh.  I don’t just whinge in person.  It’s just tough at the moment.

I have an amazing consultant.  An amazing family.  Amazing friends and my Bloodwise gang who are always there.  The Bloodwise Ambassador Facebook group has become a bit of a lifeline.  No judgment.  So much support.  So amazing.  A little plea.  If you haven’t heard of Bloodwise look at their website.  Give some money.  They are why so many of us are alive.

With love and hope,  I still have hope.

XXX