Tuesday, 21 March 2017

Brain and bones

About 6 months before I was diagnosed with cancer, I randomly predicted I would live until I was 35 years old. I was being pessimistic because my mom had not long died from breast cancer, and I was going through genetic testing to see if I had a gene fault that put me at high risk of breast cancer myself. That particular test didn't find anything but I still had a feeling of doom that I couldn't shake off. Fast forward a few months and I'm diagnosed with breast cancer, at age 33.... and that random prediction that I would die at 35 has been lurking in the back of my mind ever since.
Well, the good news is that yesterday was my birthday and I'm still here, 36 years and a day old. Woohoo.
The not-so-good-(but-hopefully-it-turns-out-to-all-be-nothing)-news is that I haven't been all that well recently and am not feeling entirely confident about making it to 37.
The hysterectomy and BSO (bilateral salpingo oopherectomy aka ovaries out) last November has been taking it's toll. The first 3 months were as expected - sore and tired and fairly immobile, but signed off from work, and geared up from day 1 to spend a lot of time on the sofa watching box sets.
Then I started to return to work, and to normal life (albeit on a 'phased return'). By this time the menopause is kicking in. One of the first things was insomnia although the not being able to sleep for no reason has improved recently. However, the hot flushes have been consistently intense with no sign of letting up. I probably get a few every hour. Some are accompanied by suddenly breaking out into a massive sweat. This is most likely to happen when I am in public, or in the middle of a conversation with someone who doesn't know me, or during the night. Plenty of hours sleep lost to waking up sweating like a pig for no apparent reason. But this is all no big deal in the grand scheme of things. I knew what to expect with them as I had them after chemo, and at home and work I have desk fans and chillow pillows that come to the rescue.
Next I started getting heart palpitations. This mostly happens at night, about half an hour after I have gone to bed, and can last for up to an hour and a half. Heart racing and fluttering, as if I'm really anxious about something or about to have some sort of panic attack. I'm not anxious, but that's how it feels physically, and it's another thing that stops me sleeping because sleeping really isn't possible when your heart's racing like that.
Then came the bone pain. This is something else I was already used to feeling to an extent because of Tamoxifen - the drug I have been taking since I finished radiotherapy. It blocks estrogen receptors throughout your body and one of the common side effects is bone pain / joint pain. On a good day I would just feel it in my ankles in the night and in the morning. On a bad day it would be all joints, right down to the little ones like knuckles. But while it was a bit of a pain in the arse, it was always manageable. Recently though the pain has been building up, and lasting all day. I am also now getting pain even when I'm sitting or lying down. There are times I have struggled to walk from my bedroom to the bathroom, or struggled to walk down the stairs at work. I keep finding myself holding on to walls or handrails and pulling myself along with my arms. I imagined this is what it's like to be 80 years old and riddled with arthritis.
I just thought all this is the menopause and it's tough shit. I can't have HRT because of the cancer, and so I just have to suck it up and get on with it.
But then my head started getting weird. It's very difficult to explain. It's not headaches (although I've had a few headaches too), and I'm not in pain or needing painkillers because of it. It is often like pressure, as if something is pressing on part of my head (there are 4 or 5 specific parts of my head where this happens). Sometimes it is like the area goes a bit numb. Sometimes there might be a bit of tingling or buzzing, and a few times it has felt like there are bubbles in there. Sometimes it feels like I have been whacked on the head with a frying pan, but without any of the pain. Sometimes it goes in to my face or my ear. All weird feelings that I have never had before. It started occasionally and now it is every day, sometimes for most of the day. It's not painful but it's entirely distracting and unnerving.
Having put it off for as long as I could, I went and saw my GP last week. The encouraging bit is I answered 'no' to most of the things that are the most common symptoms of cancer in your brain, and my GP thought it could just be menopause related. She was shocked that I have not been given any information or support post-surgery regarding menopause and said that while I can't have HRT, there are other drugs that can help ease menopause symptoms. But, even so, having had cancer, when anything like this crops up, you have to be checked for cancer. So she has written to my oncologist to refer me back to them, for a brain scan to check for cancer in my brain.  This is why I was putting off going to the doctor - as soon as you tell them you have weird things going on in your head, they will probably send you for a brain scan. It doesn't matter how many times you tell yourself, or someone else tells you, it's probably menopause or nothing, the reality is, if you are having a brain scan then you might be told there is cancer in your brain, and cancer in your brain means Game Over. There is no cure if the cancer has spread to your brain. You now have incurable cancer and will die - it's just a matter of how many months left. So hopefully anyone can understand why I don't want a brain scan. My doctor also has asked my oncologist to review and advise on my menopausal symptoms and what they might be able to give me to ease them.
Also at this appointment the doctor did a blood test, and I got the results 2 days later. There's two things going on.
First of all I have a low white blood cell count. This sent me in to a massive spin of doom and gloom because the last time I'm aware that I had an inexplicable issue with my white blood cells was before I was diagnosed with cancer and it was the cancer causing the low white blood count, I just didn't know that at the time. I started adding two and two together. Weird head sensations +  low white blood count = cancer in my brain. Then on Saturday morning I woke up with a sore throat which has turned into a cold. I briefly felt relieved as I assumed that the low white blood count was caused by this cold and I just hadn't yet got symptoms at the time of the blood test. But then I realised, it could be the other way round - I got a cold because of my low white blood count and weakened immune system. I was in Blackpool for the weekend and even though it was extremely windy and rainy I made Ricky walk for about a mile along the beach because I wasn't sure if it would be the last time I ever get to see the sea or walk on the sand.
Now I don't know what to think. I guess I have to wait for the next blood test and see if anything has improved or not.
And then the second issue with my blood was a severe vitamin D deficiency. I didn't know anything about this but I clocked it wasn't good by the way my GP was talking about it! She prescribed me vitamin D tablets to start taking that day, for at least 2 months, and I am to go back in for more blood tests to check things improve. I have since read about vitamin D deficiency and realised a few things. First of all there's a good chance it is what is actually causing a lot of what I thought was menopause symptoms, in particular the ridiculous joint pain, the heart palpitations and the extreme tiredness. (In Blackpool, I was having to go for naps in the day. Now that aint normal....). Also I have had other things going on which it turns out are caused by vitamin D deficiency including cramps and muscle weakness. (It also can cause weight gain but I am not sure if I can blame it for my recent weight gain or if that is more to do with all the eating and drinking haha).
The other thing I learned is that Vitamin D is a key part of your body's defence against breast cancer. So now I am shitting myself that if there is anything wrong with me relating to cancer, that the vitamin D deficiency might have caused it or accelerated it. And the other thing is, why the hell does no one tell you to take Vitamin D?! Especially if you have had or are at risk of having breast cancer?! It should be on big signs everywhere: TAKE VITAMIN D EVERY DAY FFS!! But anyway, I'm now on super-duper 3million x the recommended daily allowance of vitamin D tablets and hopefully in a few weeks a lot of things will have improved. Maybe it is even the lack of vitamin D that is making my head bubble and buzz.
I need a break from all this shit because I have now spent way too long being tired and ill. Today is my day off work and I went in to town to get a new residents parking permit card. It has always been the process that you have to go in to the council, in person, with ID. I turned up and got told they just changed it and you can only get them by applying online and as it happened they got rid of all the parking permits in the office just yesterday. My chin started to wobble and my eyes welled up and it took everything in me to not burst in to full on ugly tears, I was just so tired and my knees hurt so much and I couldn't believe I'd gone all that way for nothing. I then hobbled to the bus stop because I knew I wouldn't be able to walk home. (20 min walk). THIS IS RIDICULOUS. I am 36 years and 1 day old.
Right now I honestly don't know if this is all vitamin D deficiency, and in a few weeks I will be back to normal. Or if it is menopause, and I need drugs to help and/or I just need to deal with it for the next year or two til it eases off. Or if this is my body shutting down because cancer has spread and everything is going to shit internally.
I am sorry for such a long and whiny post and I wouldn't blame anyone for not bothering to read it but just in case anyone did make it to the end. Thanks for reading, sorry for such a miserable moan, but I actually do feel a bit better for getting all that out. Oh and PS - I just want to say thank you for all the lovely birthday messages, and I did have a lovely weekend despite everything. Ricky is amazing and it did me the world of good to see the sea and eat lovely food, and for most of the time, forget about the potential cancer in my brain.

Saturday, 4 February 2017

A little update

Hello!

Hysterectomy and BSO
Well I completely failed to write properly about the hysterectomy and BSO!  In a nutshell though, it all went fine, no complications, recovery good, my only issue is fatigue. I am KNACKERED! 12 weeks post op and I am back to work on Mondays, Wednesdays and Fridays 9am to 2.30pm. Hopefully it won't be too long before I'm back to full time...

For any women in the UK who are going to have a hysterectomy/BSO and are looking for a support group, I can highly recommend Hysterectomy Sisters UK on Facebook. This is where I got ALL my information and support. Absolutely fantastic and really helped with putting my mind at ease about everything (and advising on matters like big knickers).

And just to say in case anyone is ever reading this who has an operation like that coming up and is anxious - I can honestly say in my experience it was all fine. Yeah there's a few weeks where you're sore, but you just adapt to life watching TV box sets and doing little else for a while. Anyone is welcome to contact me any time with questions though.

Cancer check up
I had another one. My appointment schedule appears to be screwed up so I had my 2 year check 6 months early. My next one now isn't for another 18 months. Oh well! All is fine anyway. So far, so good. I am seeing Mr K in a few weeks to review the reconstructed boobs and find out more about lipofilling - but I doubt I will have the operation done this year. Would quite like a full calendar year without any surgeries if I can help it.

The 350k running to raise money for Secondary 1st
I have had to postpone this because of the hysterectomy and BSO. My surgery changed from ovaries out via keyhole surgery to full abdominal (open surgery) hysterectomy and ovaries out. I spent 3 months banned from running, and I haven't yet tried to run again because of fatigue (nearly didn't make it in to the office on Wednesday last week cos walking was too much :-( rubbish.) So once I am fit again I will basically redo the whole challenge - full 350km in the same number of weeks as originally planned. I am really sorry - feel like I have failed on this now.

Anyway that's about it really! xxx

Wednesday, 16 November 2016

What's a hysterectomy?

On Monday last week I had a hysterectomy! Since finding out my surgery date a few weeks ago I've done a fair bit of googling and asking questions on a hysterectomy forum to find out everything I need to know. I'm going to write up a few posts collating what I learned in case it's helpful to anyone else.

First of all, having discovered there's a whole load of different kinds of hysterectomies and for different reasons, I thought I'd better specify what I've had done and why...

Types of hysterectomy
I have had a Total Abdominal Hysterectomy (TAH) with Bilateral Salpingo Oopherectomy (BSO).
Total hysterectomy means the whole womb/uterus including the cervix. Abdominal means I had open surgery with everything removed through a cut in my abdomen. (Mine is a horizontal cut along the bikini line. Some women have vertical cuts.) Salpingo refers to removal of fallopian tubes. Oopherectomy refers to removal of ovaries. Bilateral means these were both removed on both sides.

So in short that is TAH BSO and means I have had uterus, cervix, both fallopian tubes and both ovaries out through a cut along my bikini line.

There are many other types of hysterectomy- some women have the womb out but the cervix left in (sub-total hysterectomy) , some have both of those out but the ovaries and tubes left in, some have the womb and one ovary and tube out and the left rest in etc etc. 

Also, some women have whatever bits are being removed through a cut in their abdomen like me, some have them removed vaginally, some have them removed laproscopically, ie through keyhole surgery, and some have a combination eg laproscopic and vaginal. Sometimes women won't be completely sure what kind of surgery they'll end up having until after it's done (eg the plan might be to try keyhole but if it ends up tricky for any reason then the surgeon may change to abdominal).

Reasons for hysterectomy
One of the reasons there are so many kinds of surgery is because there are so many reasons for having it done in the first place. We are all different and need the kind of surgery that is most suitable for our own situation. Common reasons include endometriosis, adenomyosis, cancer or suspected cancer, PCOS, prolapse, fibroids and many, many, many more. (It honestly appears to me that the list of crap women have to put up with is actually never ending).

My surgery was prophylactic which means preventive. I am at a high risk of ovarian cancer due to my personal history of breast cancer, having a faulty PALB2 gene, and having a family history of cancer which includes ovarian. So I needed my ovaries and tubes out (many ovarian cancers are actually thought to start in the fallopian tubes) to reduce/eliminate my risk of ovarian cancer. But in addition to this, the tablets I take to reduce the risk of my breast cancer returning (Tamoxifen) increase my risk of womb cancer. So it made sense for the uterus and cervix to go too.

I have never had any other health complications in this area so in that sense my surgery was quite straightforward.


Friday, 14 October 2016

Here Comes the Gross aka Preparing for The Abominable Surgery (Part 1)

Hello friends! I'm baaaaaaaaaaaack! To anyone who has missed my TMI posts filled with detailed descriptions about (and photos of) bodily fluids and other embarrassing/ disgusting/ sticky matters from the good old chemo and boob job days, you are in for a TREAT over the next couple of months!

 
On 7th November I'm going in to hospital for a hysterectomy. Before I get on to the more juicy stuff, here's the background. I am a genetic mutant. As well as having superpowers which I'm yet to discover, this means I'm at high risk of getting breast cancer and ovarian cancer. I know you shouldn't knock something unless you've tried it, but I already tried breast cancer and I definitely didn't like that, so I think it's fair to work on the assumption that I won't like ovarian cancer either. So, the ovaries got to go.
 

 

 
Meanwhile, the drug I'm taking for the next 9 years to reduce my risk of recurrence of breast cancer (called Tamoxibollocks) increases my risk of endometrial/womb cancer. If the ovaries are gone, the womb is essentially useless anyway. So that is why I'm having a Total Hysterectomy with Bi-lateral Salpingo-Oopherectomy. (Try saying that after a few limoncellos.) Middle fingers up! Put them hands high! Uterus, cervix, fallopian tubes, ovaries Bye!

 
Anyway my gynae appointment to agree all this was way back in May. I got put on a waiting list, told them I didn't want the surgery before the end of September anyway because of work and stuff, heard nothing back since, and put it out of my mind. Until Wednesday when I got a call from the hospital telling me:
  1. My gynae surgeon has dumped me as he will now only do business with cancer patients. (To be honest though, the snap judgement I made on the one occasion I met him which was for all of about 3 minutes, is that he is a massive dick, so I'm not going to shed any tears over it.)
  2. He's the only one here that does keyhole surgery so I have to have open abdominal surgery.
  3. Surgery date will be within the next 2-3 weeks. (Confirmed yesterday to be 7th November.)
I spent a couple of days in a flap about how soon it is and at the thought of open surgery which means a longer recovery time etc. I considered kicking off and demanding to be referred to elsewhere for the keyhole surgery. But having thought it all over I am probably (I think) not going to do that, and will (almost definitely) just go with the butcher knife/meat cleaver method of surgery on the 7th. Partly because I just want this ticking cancer-time-bomb removal done as soon as possible. Partly because being referred to a different city is likely to cause as many practical issues as having keyhole surgery solves. And partly cos I have started to get back to being a cocky fucker and feel like if I can handle the other surgeries I have had over the last 2 years then I'm sure I can handle this one too. It'll be a piece of piss, right?!

 
Talking of piss...

 
So all of a sudden I am having what's classed as major surgery in 3 weeks time and being that cocky fucker that I became following My Cancer Journey (hahaha soz) I hadn't bothered looking into it at all. Like, AT ALL. So I have a lot to learn over the coming days and weeks, and I will be very pleased and happy to share this whole experience with you in minute detail as I become a fully fledged Hyster-Sister (oh yes). Highlights to follow will include:
  • Pissing shards of glass (but hopefully not "self catheterisation" *prays*)
  • Swelly-belly
  • Vaginal discharge
  • Problems with flatulence
  • Using laxatives and screaming when shitting
  • Buying knickers the size of France
  • (Risk of) prolapse.
So exciting! I can't wait! And I'm not entirely joking. From what I have read to date I'm in with a good chance of  being given the morphine button. Plus you know how much I love my hospital dinners and remote controlled bed.

Wednesday, 12 October 2016

A letter to The Simpsons team...

Dear Matt Groening and the whole of The Simpsons team,


Please, please, please will you help our friend Heidi to tick an item off her bucket list?
 
Last year, aged 32, while pregnant with her third child, Heidi was diagnosed with Inflammatory Breast Cancer. Obviously any breast cancer diagnosis is unwelcome, however, in case you did not already know, Inflammatory Breast Cancer is the one you really, really *really* don't want to get.




Heidi started chemo during pregnancy but it wasn't working. In order to get the cancer treatment she really needed, Heidi had to give birth prematurely at 28 weeks plus 1 day. 8 days later, she and her partner Keith lost their beautiful baby girl Ally.



As if all this weren't bad enough, Heidi has now been told her breast cancer has spread, and is now incurable.


Heidi put together a bucket list a little while ago. It's actually a Bucket and Spade List - a list of things that Heidi wants to do with and for her two little boys Noah and Tait.




One of the things on the list is a money-can't-buy item - To have her voice on The Simpsons.


Please, please, please can you help to make this dream a reality. There is nothing that will ever make up for Noah and Tait losing their mum - but there are things that can be done to give them special and happy memories of their mum as they grow up. And this is one of them.

Heidi is doing everything she can to live and to make every moment count, and we want to do anything we can to help. Please help us!


Yours hopefully,


Sarah


PS I am sending this letter in the post but also sharing online...







Friday, 30 September 2016

We need to get #HeidiOnTheSimpsons

Put simply, my friend Heidi has been dealt a shit hand. Last year, age 32, Heidi was pregnant with her third child.



She was also diagnosed with Inflammatory Breast Cancer.

For those of you who don't know, Inflammatory Breast Cancer (IBC) is a horrible f*****r. If you were told you have to have breast cancer, but you are allowed to choose which kind, you most definitely wouldn't be choosing IBC.

Long story short, Heidi started treatment for her cancer while pregnant, but the treatment wasn't working.

In order to have drugs that were more likely to be effective in treating the cancer, Heidi had to give birth to her baby prematurely at 28 weeks plus 1 day. Heidi gave birth to a beautiful baby girl, Ally, but had to say goodbye to her only 8 days later.

As if having breast cancer while pregnant and then losing your child is not bad enough, Heidi has now been told that her breast cancer is incurable.

I don't even know how to put in to words how utterly unfair this is. Cancer is so cruel. But I don't want to dwell on that right now as nothing good can come of sitting around feeling angry.

Heidi has a Bucket and spade list which can be found on her award winning blog Storm In A Tit Cup. I was reading through it and number 24 caught my eye.

24. Be a voice on the Simpsons

Heidi has a proper West Country accent and as she said herself, she'd make a great pirate or farmer. So I think we should all try and get Heidi on the Simpsons! How hard can it be?! (gulp).

I have set up a Twitter account @Heidi_Simpsons and the hashtag is #HeidiOnTheSimpsons.

And basically this post is to ask everyone out there to get stuck in and do whatever you can think of to help get Heidi on The Simpsons. If anyone just happens to know one of the people involved in making The Simpsons and can put in a good word, that would be ace, thanks.


UPDATE: 4th October 2016
Thank you so much to everyone sharing this. This blog post alone has had 6,300 shares already in just 3 days, and lots of people are sharing on Twitter - THANK YOU!
I'm creating some images people can use on social media to share - have a look on the @Heidi_Simpsons Twitter account.
And I am compiling a list of people to write to and approach. All ideas/suggestions welcome.







Friday, 8 July 2016

How did you find my blog?

Hello!


I am currently getting about 900 views a day on my blog - I have no idea why and it would be great to know because if any of my posts have been linked to from somewhere and are turning out to be really useful then there might be more I can do?


Please can people let me know - how did you stumble across my blog?!


Thank you


Sarah xx