Friday 30 July 2021

My Rainbow Baby


Well my lovely bloglets,

I’ve been sitting on this post for a while. Not that I’ve actually written it. Well I have in my head, numerous times, but haven’t sat down to type until now. And I’m not sure why. It’s such amazing and wonderful news. But part of it also wants to keep it for me. Because it’s been so longed for. For such a long time. And now it’s my reality. And it’s amazing. But it’s also surreal. 

My rainbow baby. Because my fertility is fucked according to the hospital. Well. Compromised is the nice way of saying it. With a very low egg count. 14 and a half years of chemo has definitely made its mark. But that didn’t matter. I have 22 year old eggs frozen and I was getting my body ready for IVF regardless. And who knew that ALL those hundreds of pounds spent on functional medicine tests and supplements with a couple of tweaks to my diet meant that IVF wouldn’t be needed. 

And then there was the agonising 8 and a bit week wait for my first scan after having a positive pregnancy test to check that all was ok. And that there was a baby in there! I did think just before the sonographer put the gel on my abdomen. What if this is the most epic phantom pregnancy ever?!?!? But no. A baby appeared. Doing what it should be doing with development and growth on track. A huge sigh of relief. And now a much shorter wait to the next scan and the ‘half way point’ (because due dates are a load of bollocks). 

So no need for IVF. No need for the Hopeful Baby Diary - I’ve deleted the Instagram and that blog will be going soon as well. 

I don’t think it’s coming across. I’m beyond excited about this! I actually loving all the body changes, and completely in awe as to what’s going on. Which is good as I started showing around week 6. And yes. Granny did comment in how fat I was getting.

 C. L. A. S. S. I. C. 

I was also very good earlier in the week and didn’t cry when a pair of size 10 maternity jeans didn’t fit. I also didn’t completely freak out, although my blood pressure shot up, lolz, when I put on 5 kilos in the first 10 weeks. And yes. Yes I did genuinely wonder if it was twins. But I couldn’t give a flying fuck. I was told this couldn’t happen. I was going to be doing this on my own. And I did it and I’m not. I also don’t think I’ll be allowed another year off treatment so this is it. My, well, our baby. The little determined miracle who really wanted to be. God. If they are this determined already, I dread to think what’s in store!

I’m not going to go crazy with sharing everything about this. I now have others to think about and how much I want to share about them, especially when they can’t speak for themselves yet. I will update on my haematology stuff though. So far all good! Leukaemic rate hasn’t budged after 2 months off treatment which is also pretty epic. Let’s just send all the good thoughts it stays like that!

So until next time... I’m not sure I need to sign off with love and hope anymore. Because for once. Things are actually pretty perfect. 

XxX

Sunday 21 March 2021

More Processing and a Plan

Well I was going to write yesterday but my tube journey instead of being a long one ended up being broken up into two and when I write I like to do it in one hit as things change and breaking the writing impacts on the post. I like to be in the zone continuously even if it’s just to ramble shite that no one really cares about. But it’s important for me. To process. To get it out of my head. To stop it circulating. Anyways. 


So yesterday I was going to write about my recent appointment which I have also put in my Hopeful Baby Diary blog so maybe I’ll just stick the link in and keep this more about how I really am rather than the slightly tempered version I put in that because of clients reading it etc. https://thehopefulbabydiary.wordpress.com/2021/03/20/funding-clarification-and-obstetrics-referral/


In summary if you can’t be fucked to read the link it is that the consultant I saw helped me get a plan in place. Funding appeal is going in. It might take months. It might still be a no. So whilst I decide what to do in terms of waiting or just sticking it on my credit cards, is to pick the sperm donor as I have to pay for that regardless and get it to The Hammersmith. Well. Actually The Queen Charlotte’s. But anyways. They sit on the same site. And I just call it The Hammersmith as that’s where my Haematology care is. And now I’m questioning if the fertility clinic is actually The Hammersmith. Anyways. Completely irrelevant. So buy the sperm and then it’s there with my eggs. I’ve been referred to the obstetrics team to discuss my treatment plan. And ‘the impact of the disease on pregnancy and the child’ and other fun things. 


It’s when I read things like that it really brings home how serious CML actually is untreated and the pre the oral chemos it really was a killer. Not that I’m concerned about coming off treatment. If my haematology consultant thought I was in any danger no fucking way would this happen. It’s why it’s taken 14 fucking years to get here. So anyways. Really looking forward to that conversation!


This past week has been really fucking hard. I’m not going to lie. It’s so much better today. As I lost my bubble 10 days ago, haven’t been in my sister's child care bubble since the first week of January, and I had a negative Rona test yesterday morning I saw my brother, sister in law and niece yesterday and had a hug. For the first time in 12 days from a human. Last dog cuddle with ‘my dog’ was 8 days ago. And it has made such a difference. I can’t imagine how it’s been for others who live on their own who haven’t had access to anyone for a hug. I’m so tactile and to not have that whilst dealing with all this fertility fuckery with funding and all the dog owner shit which all came to a head 10 days ago has been pretty horrific. 


So basically I feel like I’ve turned a bit of a corner in the last 24 hours. Yesterday morning I had one of my (legally allowed) home visits and the talk therapist who is part of the care team asked me if I was ok because of how my eyes looked. (The rest of my face was covered by a mask) And he could see how sad I was and the impact of the burden I’m carrying. 


I’m also tired. My energy levels are shot to shit. 2 and a half years of the trial drug and I’ve hit that sweet point of my body saying. No. Fuck this. I’ve had enough. 


God this is a real ramble today. 


Should I set up a just giving page? Quite a few people have asked and said they would donate. I just. I don’t know. Whilst this isn’t my choice it’s also my choice. I don’t know what to do. 


I’m allowing myself another week off fertility stuff. To get my head back to where it was. When I was excited. When it wasn’t all another fucking car crash. Oh and I’ve requested my notes so I can complain to the general medical council about IVF consultant number one. Just to see exactly what they did/didn’t do. I might be nice and smiley but you don’t fuck with me. I will retaliate. 


So in a nutshell. Today is better. I saw some of my family. And my brother who is my nearly twin. Ish. 13 months younger than me. I’m not great when I don’t see him. And now I’ve gone into complete babble mode. Enough. 


As always. With hope. 

XxX

Friday 5 March 2021

Another set back

 Well my lovely boglets,

For those of you who follow my IVF-specific blog (www.thehopefulbabydiary.wordpress.com) you will already know this, but I wanted to write on here too.  Although if you can believe it, I'm even more pissed off today than I was when I wrote last night on my other blog.

There's been another bump in the road.  Another hurdle to get over. Another battle to fight. And I'm so fucked off and fed up of it all.

Basically, my fertility funding has been denied because they haven't stated it as an issue with my fertility, because I'm not technically infertile or have a condition like PCOS etc even though I'm doing this because I live with a fucking chronic cancer and only get a year off treatment and it's taken 14 fucking years to get to a point where I can do this.

And the fucking IVF consultant who I saw in the summer who told me he was sure it would be covered didn't actually fucking check or apply for funding like he should have done, so I found this out yesterday.  When I should have known last fucking August.  So I'm lodging a formal complaint against him because once again he didn't do his job.  When I had my eggs frozen under his 'care' 14 years ago he also didn't apply for funding and just put me through as a private patient.  So I'm absolutely LIVID with him about this.  I wish I had recorded that conversation.  And I am SO tempted to name him but I won't.  But I want the GMC to know because he's now at a new hospital so complaining to mine will do sweet fuck all.

ARGHHHHHH.  It would be SO nice if something went my way for a change.  

So I'm feeling very sorry for myself today.  And had an argument with the dogs owner so he can fuck off too.  And I suspect he might read this or my hopeful baby diary blog.  So enjoy reading this is if you are.

Doing this on my own is so much fun.  I know children are expensive but I really hoped I would be going into it without loading up my credit cards and owing around £8,000 if I'm lucky and it's only one round.

It's times like this that I really wish my life was the parallel life that I should have got. That wasn't fucked over by a chronic cancer diagnosis. That meant I did all that I was going to. I met someone in my 20s who wasn't put off by my health and all it entails and not drinking because none of that happened or existed.  That I didn't meet someone so perfect but it could never be because of life stuff and then I met the dogs' owner and thought that finally I might get the happiness that I deserve. Maybe, maybe it's the dogs owner I should be with.  Who doesn't care about my cancer. Who likes the fact that I don't drink. That we share so much in common. That we work together as a couple.  But no.  A big fat solid fucking resounding no.  Because I am destined to be alone and unloved because in so many ways my life is completely and utterly fucked. Because of a non-lifestyle-related genetic mutation that my body couldn't deal with.

I am so fucking tempted to start drinking again.

So yet more FUN TIMES in this life of mine. Not that it's much of a life to be honest.  It's really shit actually.  And I want to bring a child into it. Picking the father from a list on a website.

God I'm so bored of myself and this self-pity. Right. I'm off.  And if you have gotten this far, well done you.  You deserve a reward.


Wednesday 23 December 2020

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

Wednesday 26 August 2020

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. 

Sunday 23 December 2018

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

Saturday 13 October 2018

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