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

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.

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.

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...

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.

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

350km for breast cancer charity Secondary1st

EDIT' A full abdominal hysterectomy and bilateral salpingo oophorectomy has gotten in the way of this and I have had to put it on hold. Once I'm fully recovered I am going to do the challenge again - the full distance in the same number of weeks, just at a different time. I'm sorry!!


My fundraising page: https://www.justgiving.com/fundraising/sarahs350

Scroll down to the bottom of this post for the list of distances and dates so far :-)


Why I am running 350km:

Hello!

 

I type this almost 2 years to the day that I was diagnosed with breast cancer. I was 33 years old at the time. Breast cancer had recently killed my mom, and before her, my grandmother, so I was terrified. I really thought I was going to die.

 

I joined an online support group for young women under the age of 45 with breast cancer in the UK. Not only was the wider group support amazing, but I also formed some incredibly close friendships with other women my age who were undergoing treatment for breast cancer.

 

Since then, 5 of the women I became close friends with have died.

 

Claire's breast cancer spread to her brain. She had had a mastectomy and chemotherapy for her primary breast cancer but while she was undergoing that treatment, the cancer had spread to her brain. By the time the doctors were able to identify that the cancer had spread, she was given a matter of days to live. She had just turned 30 when she died.

Jojo's breast cancer spread to her liver. She was diagnosed with secondary breast cancer before she had finished radiotherapy for her primary breast cancer. Her doctors told her she may have 6 months to live and sadly they were right, despite further chemotherapy. She had just turned 32 when she died.

Rosie's breast cancer spread to her liver. Rosie was diagnosed with secondary breast cancer just as she had finished chemotherapy for her primary breast cancer. She underwent 6 more months of gruelling chemotherapy. She was 38 when she died, and leaves behind 2 young children.


Kate's breast cancer spread to her bones and her liver. She had completed treatment for primary breast cancer in the summer of 2014, and was getting on with her life, but in Spring of 2015 she felt a lump by her collarbone. Scans showed the cancer had been spreading and was in her lymph nodes, liver and bones. Kate also had several months of gruelling chemotherapy that was unsuccessful. She was 37 when she died.


Danielle's breast cancer spread to her liver. Her secondary breast cancer diagnosis came a matter of weeks after getting a clear MRI scan following initial treatment. Her cancer was so aggressive that she only had one round of additional chemotherapy before she died. She was 32 when she died, and also leaves behind 2 young children.

 

When you are first diagnosed with cancer, you think that's the worst thing that can ever happen to you. It isn't. You soon learn that the worst thing that can every happen to you is to be diagnosed with secondary breast cancer - ie breast cancer that has spread from the breast to another part of the body. Secondary breast cancer is currently incurable.

 

Secondary First is a charity that has been set up by my friend Rosie's husband, family and friends to raise money specifically for research into finding a cure for secondary breast cancer. Secondary First itself is being run by volunteers. All money that Secondary First raises will go to Breast Cancer Now, specifically for secondary breast cancer research projects.


I wanted to set myself a challenge to fundraise for Secondary1st. Many of you will know that before cancer, I had gotten into running, but the various cancer treatments and surgeries over the last 2 years have kept stopping me in my tracks. I can confirm I have now lost all fitness! I thought about signing up for a half marathon, but I am due to have further surgery later this year and don't know when that will be. So I have set myself more of a long term challenge....


I am going to run 350km between now and Christmas.


I can't currently run more than 2km, and I am expecting there will be at least 4-6 weeks post surgery later in the autumn where I can't run at all, so this is going to be quite a challenge for me. But it will be worth it if I can help raise a bit of money for Secondary1st because this research will help save lives.


I will keep a record of the distances I have run and when here on my blog.


Thank you for taking the time to read all this, and please consider sponsoring me and sharing my page with others. https://www.justgiving.com/fundraising/sarahs350


Sarah xxx






RUNNING DISTANCES

Friday 8 July: 2km, time - 14:24 (348km to go)
(Didn't run for a couple of weeks due to cough/cold)
Friday 22 July: 2.5km, time - 18:32 (345.5 km to go)