Fuck Me, What A Year

 Well my lovely Bloglets,

As I have been so shit with this blog for a couple of years now, I thought I'd do a yearly round-up.  For those of you who are lovely and care, and to prove I'm still here!

Well fuck me.  WHAT A YEAR!  2020.  Who would have thought?!?  All in all, I can't complain. I'm fine. My friends are fine.  My family are fine.  I think I had 'Rona but I wasn't very ill.  I just had achey legs and was very tired for a few days, but they are my fatigue symptoms anyways, so who knows?!? It was also before everyone who sneezed went to get a test, so I'll never know.

The one arse has been that I was meant to come off treatment in November and can't until Spring.  I was so fucked off at the time, but on reflection, it was the right thing to do. It's also given me time to do some functional medicine tests to see what's going on with my hormones at a much deeper level than the NHS blood test, a hair mineral analysis which to be honest I am a bit dubious about.  The test did get one thing bang on, but some of it really doesn't represent my lifestyle, and the doctor I had the consultation with didn't take my meds into consideration, so, the jury is very much still out.  I have also done a test to look at all the omega ratio's which is interesting and actually reflects my NHS blood cholesterol blood test and also shows me some other stuff so I can help correct things.  All of this means that I'm taking 13 different supplements a day, which is costing a fuck tonne. But.  I am focused on helping my body after a battering of chemo for the last nearly 14 years, and adult life stress and all the rest of it.  And I want to only have one round of IVF next year.  So it's worth it. And for those of you who think supplements are bullshit and quackery (as some lovely person said to me on twitter this week before I blocked them),  there are GPs and Pharmacists who recommend them.  So there.

And on baby stuff, I didn't write about it on here because I wasn't ready for people I know, and potential family members to read it, as I thought I was pregnant a few months ago.  I"m pretty sure I was and it just didn't stick, which is so common, which has also given me a kick up the arse with supplements.  It is also highly likely that it wasn't me, but the sperm.  Did you know that 60% of miscarriages can be due to the sperm, NOT the woman?  So men, if you want a baby, and it's not happening most of it can be up to you.  So part of me was very sad that I wasn't as it would have made everything so much easier, but it has also given me time to get life shit sorted before starting fertility treatment in the early Spring.

It also still looks like it will be me on my own doing it.  I really hope not. I would love it if it happened with the man that I've 'not been in a relationship' for the last nearly 3 years.  But if it's not, I'm at peace with that.  I will do this regardless.  Anyways, I've ranted about this before.

Back to this year. Well I'm still 'not with' the man.  He did admit that we are 'seeing each other' not long ago. Ha ha ha ha ha ha ha ha.  And when I got my elephant tattoo, he sent a text to my father saying what is it with girls with tattoos going out with men with vans? (He has one for work).  So anyways.  Read what you will into that.

So I got my elephant tattoo!!!  Managed to get it in between the November and current lockdown. No. It's not tier 4.  It's lockdown. For fucks sake.  To remind me to be strong and to keep going. As I do.  They are my spirit animal.  They make me so happy.  I don't know why.  They just do.  They are amazing.

And when Christmas was canceled I got stuck in tier 4 as I had clients to see in person, who yes, I am legally allowed to see, and I wasn't going to bail on them last minute, and until today, I was going to be on my own, but I will now be with man and hound which will be very nice. It is going to be a fucking weird Christmas though. Not going to lie.  I think we will, probably like most of the country, have our family Christmas in the Spring.

Work has also been good this year. I'm so fucking fed up of seeing most of my clients on zoom rather than in person, but.  It has meant that I have had many who I wouldn't ever have seen de to location if it had been in person, so that's a plus.

And my jeans of doom STILL FIT!  So I think that's a WIN. Hopefully, they still will next week... I did manage home exercises for about 3 weeks and then life took over and energy levels crashed, so I'll pick that up again...

I'm not going to lie, this year has had its difficulties. Its ups and downs,  Going back to my parents for lockdown 1 and not spending it with the man and hound was incredibly hard and hurtful. To be told you aren't wanted and to go back to your parents is not nice.  But that was before I mentioned baby stuff and a true end for us if he's not the father. So it's been different since the end of June when I came back to London.  As always, I am ever hopeful.

This year has also been a year of lasts.  My last birthday on my own, my last Christmas on
my own.  My last year being 'the single one' in the family. Because if everything goes my way next year, and it really fucking should after all the shit I've had to deal with in my life.  This time next year, I will either be heavily pregnant or with a newborn.

So with love and hope,                                                                                                                               XxX

The Baby Diaries Part 1

 Well it’s been fucking ages. I know. I’ve neglected this blog. Mainly because I’ve been writing for an American blood cancer site and they (understandably) want unique stuff. And I can never be arsed to write the same thing, differently enough, to post on two different sites. 

I’ve also lost my writing mojo recently. I basically haven’t written anything since December. 

So a whirlwind update of the last 18 months. Well. I’m still alive 😂. I’m still on chemo and I’m still tired. But. The chemo is much better and the fatigue is dealable (yes that is a word) too. But the best thing about this chemo is that my results have been AMAZING, around 0.004% for the last nearly two years so I am OFFICIALLY allowed to come OFF TREATMENT in November. But. Because of fucking ‘Rona, it looks like it will be the spring because there might be a second spike blah blah blah. 

Unlike many in the blood cancer community I couldn’t give two fucks about ‘Rona in terms of fear/shielding etc as my health is good and my immune system (other than not dealing with my cancer when it started, lolz) is epic. So I’m not at risk. Anyways. Bit of an arse having to wait until spring because I’m going to have a baby and I would rather give birth pre-36 than post 36. And yes I know I’m mental and I’m still young blah blah blah. But I wanted to have my first baby my 30. So I’m feeling my age. 

I also have a lot of medical knowledge about pregnancy and birth which doesn’t help when I FREAK OUT about being an older first time mother. 

So today the ball started rolling. I had my first fertility appointment. All went well. Being booked in for blood tests and a scan to see if I’m fertile and how my reproductive organs are. I have no idea if chemo has fucked them or not. But it’s ok as I have 17 eggs frozen from when I was 22 which I can use if my fertility isn’t good/I’m infertile/actually why am I even thinking about it?! Eggs aged 22 or eggs aged 35 after 13 years of chemo. No brainier! What a fucktard. Anyways. The point is, I have options. Which is nice. 

And I can hear you all shouting. BUT IS THERE A MAN IN THE PICTURE?!?!?! Well. Sort of. There is a man who I love and who loves me. But. Me being me. Is it straightforward and not complicated? No of course not!!! So we shall see. He’s older and convinced he’s too old. I did tell the consultant today there is a man but thinks he’s too old at 51. And the consultants reply. ‘That’s no age at all!’  I could have kissed him through the screen. (Because basically all appointments are remote at the moment). So we shall see. 

I will do it on my own though with a sperm donor if I have to. I’m not letting this opportunity go past me. Ideally it would be with the man. But this is too important to me to not do it just because he’s freaked out about his age. I’ve waited 13 and a half years to come off treatment. And it might be 14 by the time it happens. So I’m grabbing it by both hands. 

Hopefully I can be off treatment for a long time. It all depends on what happens with the leukaemic rate. I’ll definitely be allowed a year for the baby. There is a drug I can use in pregnancy if I have to. I’m doing loads of naturopathic stuff to help my body. So I really hope I get more than a year. 2 years would be a dream. Or longer. 

But as long as I get my baby, or babies. God. It could be twins. Well. At least I wouldn’t need to go through it all again for a sibling! Anyway. I’ve wanted to be a Mother since I was 10. Maybe before that but I just wasn’t aware of it. So 2021 is the year. Fuck. It’s mega. It’s terrifying. It’s exciting. It’s surreal. 

I hope it’s with him. Well. I always hope don’t I. Got it on me permanently. Maybe that will be the baby’s name if it’s a girl.

And now I need to go and cry. 

2018. Well you have been pretty amazing.

Well my bloglets. What a year it has been. I’m trying to remember how I felt when I wasn’t me. And it’s so hard. The memory is amazing. Eradicating what it can’t hold on to enable you to move forward. I have felt like me, truly me for the longest since I was 21. 13 years ago. 

Christmas since my diagnosis has always been very emotional for me. I have always cried and it hasn’t been happy tears. It’s been tears of overload. Of not being able to cope. Of wishing life was different. Of leg pain from exhaustion. Shooting pains down my skull. My body needing a break. Of being at breaking point. And knowing my cancerversary is around the corner. Yet another year of living with cancer to be ticked off on the horizon. No end in sight. 

But this year it’s different. Work has been so much better since the summer. I had 6 clients in the week before Christmas and 2 were new first appointments. Which is amazing!

And I’m happy. Genuinely happy. I’m not fucked with exhaustion. I’m going to start running again next week. And I can’t wait! I have the energy to do it! And to work. And to see friends in the evening. And to cook. And to be me!

And the best thing is that my family and friends can’t believe the difference in me. They had forgotten who I really was. How I really am. To be fair. So had I. I’m still astounded I can get by on 9 hours sleep, 3 months in to my new treatment. 

I had a rocky couple of recently with a dose shift but because my consultant it so fucking amazing and listens, that’s been sorted. And my energy levels have shot up again. 

I don’t wear my ‘please offer me a seat’ and ‘Cancer On Board’ badges when out and about. I don’t worry about getting a seat on the train. I can stand up! I can live. And I forget that I have cancer. And that it’s there. 

I’m writing this and feeling a bit detached from in. I’ve felt like this when I’ve written before. It’s fine. It’s not a complaint. Maybe this is how writing should be. It shouldn’t be upsetting and make me sad. It should just be. 

This new drug is making me really think about the future and what I can do. And do it! And there is also someone. A special someone. And that makes it so much better. And they have been there when it’s been fucking horrific and I can’t speak or stand because I’m so exhausted. And they aren’t put off by all my cancer shit. And when I cry because of babies. And they are here now to see me. The real me. And well. We’ll see what happens. But you know me, glass half full and always hoping!

And there is another recent baby in the family. A November edition. I have my gorgeous 3 nieces. My girls. So special to me. And I hope I will be able to have my own. So much.... for now I have to make myself content with them. And I adore them. Nothing could have prepared me for how I feel when I see them. Hold them. Kiss and cuddle them. Have them asleep in my arms. 

So this year has been challenging. A stem cell transplant option there, lingering around the corner, just out of reach. Possibly coming closer. Possibly being my reality in the New Year. But it looks like I can send that away now. No need to make that decision. Not have to contemplate possibly killing my self in order to possibly get a better life. And then compassionate use for a trial drug. And my life is mine. I will be forever grateful to my consultant for not giving up on me. For not allowing herself to say ‘I’m really sorry. But that’s just going to be your life’. Or not believing it was as bad as it was as other consultants have done. She can’t believe how I am. The difference. 

2018 has been the first of many things for a really long time. I had a tan in the summer as the drugs I took then didn’t make my skin photosensitive. I’m on a new drug and I have energy even whilst on treatment rather than having to pray for a treatment break. My leukaemic rate is basically the best it has ever been right now. I have welcomed 2 new nieces, holding them when they were just a day old. 2 of ‘my girls’ have come back to the UK after living abroad. I am now a paid blog wrote for an American company. I am not worried about paying my rent at the end of the month for the first time in a very long time. I have a gorgeous chocolate Labrador in my life. I have that special person to call and assuming nothing drastic happens in the next week, I won’t be that single person amongst couples on NYE. For the first time in my life. 

So overall. 2018 has been pretty amazing. So I just hope, as always, that 2019 is even better than the second half of this year. If that’s the case. Well. The last 11 and a half years of struggle with treatment will be worth it. If this is now how I’m going to be forever. Then I’m ok with all that I’ve missed out on. Because I’m determined. And I will ‘catch up’. And I will achieve what I want to. 

I am as always. So incredibly grateful to my amazing family who have never given up on me. To my beyond amazing friends who have always been there. And are now enjoying me again. And are so happy for me. And to my Bloodwise ‘family’ who have supported me and listened to me whinge and moan and complain and have never told me to shut up and get over it. Or compare themselves and how bad it may be for them to me. They have given me much needed space. And I can’t put into words about what that has meant to me. 

And this Christmas, my heart doesn’t ache in quite the same way for what I want and don’t have. There is a glimmer that I might get it. And I will hang on to that fiercely. 

So I hope that you all have a wonderful Christmas is you are able. It can be difficult and I really know how that is. I hope you can surround yourself with love and joy. And I hope. Because without it there is nothing. 

XxX

Still me!

Well my wonderful bloglets,

I can’t believe how long it’s been since I’ve posted on here. Although this seems to be a theme. Now that I write for an American company and it has to be unique stuff for them, I write loads for them and neglect here. But. Not today!

So I still feel like me and it’s FUCKING AMAZING! I am also genuinely thinking about going running again! I just have to be careful as I do a lot of dog walking, I don’t want to completely fuck myself with running as well.

I think the biggest thing that I’ve been able to do on the new drug is to cook in a Friday evening and have friends over for supper. I haven’t been able to do this in EIGHT YEARS!!! So that’s pretty fucking fabulous.

I can get through the day AND evening on 9 hours sleep. Admittedly I’m tired at the end of the day, and I should reallly get more than that as my mother pointed out that I’m still on an oral chemotherapy. But. I can. And it’s not the same tired. It’s not the heavy fatigue. I had one day where that returned and I thought it was all over. The new me. But I think it was a blip. I had just done too much. I think the week before I had been out every night! AND I ALSO HAVENT WORRIED ABOUT HOW MUCH SLEEP I’LL GET EACH NIGHT IN WEEKS.

I can also stand up and other than that one blip, I haven’t word my ‘Cancer On Board’ and ‘please offer me a seat’ badges since my chemo break! AND I DON’T WORRY ABOUT NEEDING TO SIT DOWN WHEN I’M OUT AND ABOUT

Work is so much busier. I’ve had quite a few new patients book in who have come to me via my website/online. It’s like the universe knows I can deal with it.

I feel like this might all sound a bit, I don’t know, not excited or happy enough. I really am. I just pray to fuck that it’s working. I find out a week on Monday. I am on the lowest dose do my consultant can increase it. I just worry that the increased dose will potentially mean that I won’t feel as good. I’ve never worried about blood test results. Not once in over 11 and a half years, so it’s weird to be worried. I try not to focus  on it. What will be will be. I just really hope that it is controlling my leukaemia rate and it hasn’t shot up.

So with so much hope,
XxX

Aaaaaaaand I'm BACK!!

Well Bloglets,

I know it's been a while.....

So.  You won't believe it.  A HAPPY ME!!!  I know.  A rarity.  I'm fully aware of that.  It's just a fucker that it mainly happens when I'm off treatment, which as you all well know is not often and not for long.

I thought I had better document it before it went and I'm miserable and whingy again.  Because I know how much you all love that.....

I have been off treatment for nearly 2 weeks and I became myself again 7 days after coming off it which was incredible as I thought it would take 10 days.

I noticed when walking home last Thursday evening that I was me again. I'd had a late night on Wednesday and wanted to go to bed at 8pm, but it was a friends birthday so I didn't get to bed until around 11.30... I didn't have a great nights sleep and definitely didn't get enough that I needed and was slightly worried as I had a busy day the following day ending with 3 massage clients at 7.30.  So to say I was slightly worried about how I was going to do it was an understatement.  For the last few weeks the fatigue had been fucking horrific.  I wasn't coping.  I was always going to go home on the Thursday evening for the bank holiday weekend to have the Friday off as well, but I had to head out at lunchtime.  I had so much work I needed to do but I couldn't think.  I couldn't function.  I was in Pret getting some lunch and phoned home and cried because I was so exhausted I couldn't make a decision about what to eat.  I didn't feel hungry which didn't help even though I knew I was.  All I could acknowledge was the exhaustion.  I had felt like that for a couple of weeks because I had a weekend of fun.  And because my energy was getting worse and worse anyway as it seems to do (it's an accumulative effect of the drugs) and not having a weekend to sit and do nothing because I went to a friends wedding, which was magical and I wouldn't have missed it for the world.  I fucked myself severely and suffered.

So I was not in a good space and it was getting worse.  So to suddenly realise last Wednesday when walking home after a long day that I DIDN'T FEEL COMPLETELY FUCKED AND EXHAUSTED AND I FELT LIGHT AND NOT LIKE I'D BEEN PUNCHED IN THE FACE AND ENJOYED THE WALK AND DIDN'T HAVE TO BULLY MYSELF TO TAKE EACH STEP. WELL.  IT WAS HUGE!  SO MUCH BIGGER THAN TYPING EVERYTHING IN CAPS LOCKS!!!!!!

And I've been me again for nearly a week. And I might have overdone the whole being excited about not needing sleep so I might not have actually had enough... so today I feel tired.  But.  It's NOTHING compared to how it was.  To try and explain a bit.  On Saturday night I only had 8 hours sleep and on Sunday, after spending another weekend at home for my Grandmothers birthday, I got the train back arriving around 6pm.  I then had the energy to cook for the week and to do some cleaning/tidying.  And it was fine.  I could do it.  I can stand up without it exhausting me.  It's just.  Well there are no words.

And it's when I feel like this, when I am fully me again.  The me that can get so much done.  That I think.  Fuck yes to the transplant.  I'll smash it!  Why wouldn't I do it for the possibility to feel like this ALL the time!!!

And when my parents and family notice how I am.  That I'm different. In a good way.  They notice the change.  And someone else said to me last week how nice it is to see me like this.  To be able to formulate a sentence at the end of the day without the effort being too much.  And when I'm asked how I am and I say that I'm well and I MEAN it!  Rather than thinking, you have no idea how I really feel.

In two days, this Thursday I'm back at the hospital to get the new drug.  And I have my fingers crossed.  And I hope.  And it's fitting that it's Blood Cancer Awareness Month for all of this to be happening.  And I hope that I raise some awareness with this.  To show how it can be.  How it really is.  It can be so fucking awful.  And then I get a window of amazing which I will hold on to.

So I will be back really soon.  If, IF I get side effects from Asciminib I will know pretty quickly...

With love and hope as always,
Me XXX

It’s all about me. Isn’t it?

I know I have a massive WHAT ABOUT ME complex. Also known as middle child syndrome and also getting so much attention since my diagnosis. Which has lessened over the years. Obviously. It’s old news. Time moves on. Other people get Cancer. Die from cancer. Get married. Have babies. Buy houses. Change jobs. All these things are important to them. I get that. I really do. 

Yet. 

What about me? And trust me. I’m so fucking bored of it all. More than you are. 11 and a half years. So. Fucking. Dull. I wish it was over. That I could move on. That I could...Well. My parallel life. And it’s not to say I won’t. Tick tock. Tick tock. 

The NHS was 70 last week and all I saw were posts saying how amazing it is and how people are happy it’s saved them. And it is. I mean it’s been completely broken by the general public using it for what it’s not meant to be for. For too many chronically ill people like me draining resources. For people demanding aspirin on free prescription instead of paying 70p for it in the shop. And so much more. 

And I hate I cost so much. I feel very guilty about it. But at the same time I am grateful that I don’t get a bill every time I go to clinic and pharmacy. I wouldn’t be able to pay for it if I had to on an ongoing basis. I am so grateful for all of those who pay their taxes that pays for my treatment. 

And yet. Am I grateful that the NHS has saved my life? Honestly? I don’t know. This is of course said knowing that I won’t die. I might feel very differently if I was saying goodbye to my life right now. 

I seem to be writing on a topic I wasn’t going to. Obviously I need to get it out. 

My fatigue is so fucking awful at the moment. It’s harder to be happy. 

And what about me? I write for an American site and occasionally I look at the comments and it’s interesting. They are all about themselves. No one really says ‘great blog’ or ‘thank you’ or ‘I feel the same’. Not that they should of course. That’s what I’m used to from the British people who read my blog. Getting support from them in their comments. Especially my Bloodwise gang. They keep it focused on me, not them. And another thing about the Americans is that they always mention Myeloma. I’ve got fucking CHRONIC MYELOID LEUKAEMIA. it’s DIFFERENT. Faaarking hell. And I don’t know if it’s because they want to mention Myeloma and increase awareness. Which is great obviously. Everyone thinks Myeloma is skin cancer. But. I don’t fucking have that fucking cancer. And it pisses me off. 

I could not write for them. But. It would be one less opportunity to talk about me. 

I’m so fed up of it all. It’s exhausting. I get a chemo break in just over 2 week’s for 2 week’s. I can’t wait. I should get 4 days of being me again. If my leukaemic rate has dropped enough I’m going to ask for a dose reduction on Monday. It hasn’t dropped as fast as my consultant would like though to date. 

I’m the joys of spring today... at least I have a tan. And this makes me happy. 

Started thinking about another tattoo.... an elephant. To remind me to be strong. They are my spirit animal. I love them so much. Always have done. 

With love and hope. Always hope. Even if it’s whinging hope. 

XxX

I’m still here

I haven’t written in ages. So many times I’ve had sentences float in to my head but I haven’t sat down and typed. Might be because I now blog for an American site so use up a fair amount of my writing on that. I have to write original stuff for them, which is fine, I just feel I have neglected this is in a while. 

I don’t even know where to start. I gave up drinking 10 years ago today. I never thought it would be a permanent stop. I was only going to have a pause over the summer to let my liver have a break and start again after 3 months. And then 3 months turned into a year, and a year turned into 10. I don’t miss drinking. Well. Sometimes I do. But I think I can count the number of times I’ve *really* wanted a drink on one hand. 

I’m so much better without it. I could be a horrible person with it. I haven’t started again as I can’t trust myself. And that’s not good. I know my last reference point wasn’t ‘normal’. 23. A student. Recently diagnosed and drinking to cope. Not that I knew that at the time. I’m happier without it. Even though people think I’m boring because I don’t drink. 

That’s their shit, not mine. I can be just as ridiculous sober as I was drunk, but know I won’t fly off the handle, or get immediate memory blanks or get the shame. 

Back at the hospital tomorrow. It’s my second 4 weekly visit in a row. My liver is under control and the ‘roid rash’ has gone. But. Chemo plague is spreading onto my face from my neck. Not happy about that. 

AND I CAN SUNBATHE!!!! For the first time in 10 YEARS!!!!! Bosutabib doesn’t fuck with the melanin cells so I can once again go brown and not just burn. I don’t have to worry about being outside. It is AMAZING! I still wear factor 30 though. People who burn are fucking idiots and there is no excuse. 

I should be getting the new drug in 4 week’s. I think it’s spelt Asciminib. The hospital have allowed me compassionate use. I’ve asked my consultant if it also impacts on melanin production. I really don’t want to have to give up the sun again. 

I give up so much. 

I’ve started doing home exercises again as I’m fed up of being so critical about my body. I can’t go running because of low energy, so I’m making myself do them. Managed 3 times a week for 3 week’s so far. 

Get weighed tomorrow.....

I also don’t have the dog as much which is very upsetting for me. Change. I hate it. Especially when it’s sudden. I have made a real effort to keep up with walking lots and most days I managed to get 10,000 steps. It’s so much easier when it’s sunny and I can be in it. 

I’ve just read my last post to see where I was. I’m much better than then. Still have my blips. I’ve been able to process what I wrote about then. It sits easier. And then I always have constant drama of one sort or another to occupy me.... friends and family are really beginning to clock that everything I do is complicated. Nothing is ever simple... 

I want to write about one complication. Well. That’s not the right word to use. I don’t know what is. Maby I will one day. I don’t know. My usual car crash involving men. Don’t think I’m there yet to put it on the Internet. Still hoping. Not sure I should. Push me pull you. Words say one thing. Actions say another. What do I believe? So I carry on. One day at a time and see what happens. 

I think I’m ok though. 

Haven’t cried this week, so it can’t be that bad. 

So to bed I need to go. My eyes are heavy and closing. I feel this is a bit of a nothing post. But I wanted to write. I’m still here. Still getting out of bed every day. Still doing my best. More news tomorrow. I’m going to ask if I can have a treatment break before starting the new drug. I hope my consultant says yes. 

Always hope.