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.
Wednesday, 16 November 2016
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:
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:
- 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.)
- He's the only one here that does keyhole surgery so I have to have open abdominal surgery.
- Surgery date will be within the next 2-3 weeks. (Confirmed yesterday to be 7th November.)
- 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.
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...
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.
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.
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.
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
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.
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)
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!
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.
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)
Tuesday, 5 July 2016
"Update" (because I am too tired to think of a better title)
So (having postponed my original appointment) tomorrow is my first annual Oncology review ie check up with the cancer doctors in the cancer clinic. This will be the first time I have had any sort of cancer check up since finishing radiotherapy last year. Apparently they will want to examine me to check for lumps that might be cancer, and find out how I am to check for symptoms of cancer, monitor any ongoing side effects of original treatment, and monitor side effects of ongoing treatment (tamoxifen). Basically, what kind of state is your body in now? So I've been thinking my way around my body and what's what at the moment, and while I am thinking about it, I thought I'd also write it down.
Brain
I definitely have Chemo Brain. When I was first diagnosed and heard others talk about Chemo Brain I thought it was just a made up thing by members of YBCN. I was wrong! It's a real thing, but there's a lot of research still to be done to fully understand it. Chemo is poison that kills cancer cells. It also kills healthy cells all over your body including your brain. Some parts of you recover quickly from chemo, like the inside of your mouth, other parts of you can take years to recover - like your brain.
Chemo definitely played havoc with my memory. I still find myself having to ask people "What's the word for..." pretty much every day. There are so many words that I seem to have just lost. But I find that once I relearn a word, I have it back for good. (Something to do with little memory connections in my brain being rebuilt according to my friend Charlotte.)
As well as a knackered memory, I also have bad concentration and bad focus which is unhelpful for everything from work, to conversations with friends, to watching tv programmes, to tidying up the house. If I ignore your text it isn't because I'm ignoring you. It's because I read it, got instantly distracted by something else (and then something else, and then something else, and then something else...), and just completely forgot. And if I do text you back, I'm probably in the process of being distracted from something else as I type and by the time I have finished my text to you, I will have completely forgotten what I was doing before. Ah well. Sorry. I just keep my fingers crossed it will improve over time - although apparently Tamoxifen doesn't help with cognitive function, and I'm on that for another 9 years!
Lady bits
Well, my internal lady bits got well and truly fried to shit by chemo. I have had no sign of a period since September 2014, after chemo number 2. Some women never lose them, some lose them for a few months, some for longer, or forever. You never know what could happen but it definitely looks now like mine are gone for good. (This means I have been in the menopause - which also does not help with brain performance.) No matter anyway, I'm having the lot chopped out later this year before any ovarian or womb cancer has opportunity to pop up too. Plus - it's actually a good thing in terms of my risk of breast cancer recurrence. Fried ovaries means less estrogen (aka cancer fuel) which is good.
(If you don't like TMI then move on to the next section now.) I have however experienced the joy of non-hormonal Tamoxifen + Copper Coil "periods". The first was the worst. In a nutshell, imagine a murder scene in the bathroom at least once an hour every hour, and pain like someone is shoving a bread knife in your stomach.
Weight
There's 2 stone more of me now than there was before I got cancer. It's a combination of reasons. I gained most of it when I was undergoing cancer treatment. Since then I have spent most of the time up until a few months ago pretty much banned from any meaningful exercise, and in addition to this, Tamoxifen makes it hard to lose weight. Then there's all the "fuck it" eating and drinking I have indulged in. So I am going to have to really put some effort in on exercise now to get back to the weight I was. Having spent so long frustrated at not being able to exercise, it finally went on for so long that I just lost the motivation and drive to go out and run. This is not helped by constantly being knackered.
Tiredness
This is playing on my mind a bit recently. For example, yesterday (Monday), after a pretty quiet and relaxing weekend, I had to go back to bed at 9.30am because I was simply too exhausted to carry on with the day. Ridiculous. I don't think my tiredness can be classed as fatigue as it is usually not as bad as that, but I am getting frustrated with how long it is taking to get my normal energy levels back. I was asking about it on the YBCN forum earlier and I am definitely not the only one which is reassuring - I'm glad it is "normal" - but I wish there was a way to just fix it. There isn't. I've been reading up on it and the advice is what you would expect - try and eat well, try and exercise, try and get good quality sleep, rest when you need to, get support from other people etc - but ultimately, it will just take as long as it takes to recover and get your pre-cancer energy levels back. Once again, menopause and Tamoxifen also add to this. (It's no wonder it's nickname is Tamoxibollocks.)
Tits
As far as I know there's no cancer in them so that's the main thing. Aside from that though they're still "under construction". I've practically lost track of all the surgeries and procedures I have had but the most recent is the first stage of nipple tattooing. Yes - if you don't class the 4 little radiotherapy markers I have, my first tattoo is a tattoo of a nipple! At this point my chemo brain has kicked in and I can't think of the word I want. It's definitely not "showbiz" but I can't for the life of me find the word I want so it'll have to do.
My first tattoo is of a nipple! Showbiz!
#facepalm
Anyway. The tattooing will be done gradually over a few sessions (better to build up the colour bit by bit using pigment and get it right and natural looking, than get overenthusiastic with ink and end up with two targets on your boobs. Their words not mine.) It is done in the Micropigmentation Clinic in Burns and Plastics at the Hospital. The doctor and nurse that saw me have also referred me to another department because of my surgery scars which apparently are hypertrophic and need some attention.
Like I said though - none of this really matters as long as there isn't any cancer in there.
Two other tiny gripes...
Nails - they have still not recovered from chemo. Weak and bendy, and still not properly attached to the nail bed. But it's nothing some nail polish can't hide.
Veins - they've recovered a lot since chemo although I did manage to explode one in my hand a few months ago by knocking it. My biggest fear was lymphedema - but I keep getting lucky escapes with that.
Anyway... having been reading about the signs of secondary breast cancer in the lymph nodes, brain, lungs, bones and liver (the places breast cancer can spread to), aside from the tiredness, I don't think I have anything to worry about. And in the absence of other symptoms, the tiredness is most likely just cancer treatment/ menopause/ tamoxibollocks....
SO FINGERS CROSSED NOTHING SCARY IS SAID OR DONE AT ONCOLOGY TOMORROW.
If you have read this far... thank you! I look forward to the day when I will stop being a cancer bore. But for now, I'll try and make up for my waffle with some cute pictures of my dog.
Brain
I definitely have Chemo Brain. When I was first diagnosed and heard others talk about Chemo Brain I thought it was just a made up thing by members of YBCN. I was wrong! It's a real thing, but there's a lot of research still to be done to fully understand it. Chemo is poison that kills cancer cells. It also kills healthy cells all over your body including your brain. Some parts of you recover quickly from chemo, like the inside of your mouth, other parts of you can take years to recover - like your brain.
Chemo definitely played havoc with my memory. I still find myself having to ask people "What's the word for..." pretty much every day. There are so many words that I seem to have just lost. But I find that once I relearn a word, I have it back for good. (Something to do with little memory connections in my brain being rebuilt according to my friend Charlotte.)
As well as a knackered memory, I also have bad concentration and bad focus which is unhelpful for everything from work, to conversations with friends, to watching tv programmes, to tidying up the house. If I ignore your text it isn't because I'm ignoring you. It's because I read it, got instantly distracted by something else (and then something else, and then something else, and then something else...), and just completely forgot. And if I do text you back, I'm probably in the process of being distracted from something else as I type and by the time I have finished my text to you, I will have completely forgotten what I was doing before. Ah well. Sorry. I just keep my fingers crossed it will improve over time - although apparently Tamoxifen doesn't help with cognitive function, and I'm on that for another 9 years!
Lady bits
Well, my internal lady bits got well and truly fried to shit by chemo. I have had no sign of a period since September 2014, after chemo number 2. Some women never lose them, some lose them for a few months, some for longer, or forever. You never know what could happen but it definitely looks now like mine are gone for good. (This means I have been in the menopause - which also does not help with brain performance.) No matter anyway, I'm having the lot chopped out later this year before any ovarian or womb cancer has opportunity to pop up too. Plus - it's actually a good thing in terms of my risk of breast cancer recurrence. Fried ovaries means less estrogen (aka cancer fuel) which is good.
(If you don't like TMI then move on to the next section now.) I have however experienced the joy of non-hormonal Tamoxifen + Copper Coil "periods". The first was the worst. In a nutshell, imagine a murder scene in the bathroom at least once an hour every hour, and pain like someone is shoving a bread knife in your stomach.
Weight
There's 2 stone more of me now than there was before I got cancer. It's a combination of reasons. I gained most of it when I was undergoing cancer treatment. Since then I have spent most of the time up until a few months ago pretty much banned from any meaningful exercise, and in addition to this, Tamoxifen makes it hard to lose weight. Then there's all the "fuck it" eating and drinking I have indulged in. So I am going to have to really put some effort in on exercise now to get back to the weight I was. Having spent so long frustrated at not being able to exercise, it finally went on for so long that I just lost the motivation and drive to go out and run. This is not helped by constantly being knackered.
Tiredness
This is playing on my mind a bit recently. For example, yesterday (Monday), after a pretty quiet and relaxing weekend, I had to go back to bed at 9.30am because I was simply too exhausted to carry on with the day. Ridiculous. I don't think my tiredness can be classed as fatigue as it is usually not as bad as that, but I am getting frustrated with how long it is taking to get my normal energy levels back. I was asking about it on the YBCN forum earlier and I am definitely not the only one which is reassuring - I'm glad it is "normal" - but I wish there was a way to just fix it. There isn't. I've been reading up on it and the advice is what you would expect - try and eat well, try and exercise, try and get good quality sleep, rest when you need to, get support from other people etc - but ultimately, it will just take as long as it takes to recover and get your pre-cancer energy levels back. Once again, menopause and Tamoxifen also add to this. (It's no wonder it's nickname is Tamoxibollocks.)
Tits
As far as I know there's no cancer in them so that's the main thing. Aside from that though they're still "under construction". I've practically lost track of all the surgeries and procedures I have had but the most recent is the first stage of nipple tattooing. Yes - if you don't class the 4 little radiotherapy markers I have, my first tattoo is a tattoo of a nipple! At this point my chemo brain has kicked in and I can't think of the word I want. It's definitely not "showbiz" but I can't for the life of me find the word I want so it'll have to do.
My first tattoo is of a nipple! Showbiz!
#facepalm
Anyway. The tattooing will be done gradually over a few sessions (better to build up the colour bit by bit using pigment and get it right and natural looking, than get overenthusiastic with ink and end up with two targets on your boobs. Their words not mine.) It is done in the Micropigmentation Clinic in Burns and Plastics at the Hospital. The doctor and nurse that saw me have also referred me to another department because of my surgery scars which apparently are hypertrophic and need some attention.
Like I said though - none of this really matters as long as there isn't any cancer in there.
Two other tiny gripes...
Nails - they have still not recovered from chemo. Weak and bendy, and still not properly attached to the nail bed. But it's nothing some nail polish can't hide.
Veins - they've recovered a lot since chemo although I did manage to explode one in my hand a few months ago by knocking it. My biggest fear was lymphedema - but I keep getting lucky escapes with that.
Anyway... having been reading about the signs of secondary breast cancer in the lymph nodes, brain, lungs, bones and liver (the places breast cancer can spread to), aside from the tiredness, I don't think I have anything to worry about. And in the absence of other symptoms, the tiredness is most likely just cancer treatment/ menopause/ tamoxibollocks....
SO FINGERS CROSSED NOTHING SCARY IS SAID OR DONE AT ONCOLOGY TOMORROW.
If you have read this far... thank you! I look forward to the day when I will stop being a cancer bore. But for now, I'll try and make up for my waffle with some cute pictures of my dog.
Tuesday, 7 June 2016
Reaper
Nearly 23 months ago I was diagnosed with breast cancer. 18 months ago I finished chemo. 17 months ago I had the big surgery to remove the remaining cancer and my lymph nodes. 14 months ago I finished radiotherapy, marking the end of active cancer treatment.
Since the end of that active cancer treatment I have remained under the care of all 3 of Leicester's hospitals, with more appointments than I can remember or count. I had a second surgery 11 months ago (mastectomy and reconstruction on my "good" side) to reduce my risk of getting breast cancer again. A third surgery 7 months ago to exchange the temporary implants I had on both sides for permanent ones. And a fourth surgery 3 months ago for nipple reconstruction.
I've spent the last 14 months on Tamoxifen - a tablet I take each night containing a drug that blocks estrogen - to reduce the risk of my cancer returning. I'm pretty much in the menopause as a result. Following a number of appointments with Genetics and Gynaecology over the last few months, I am now on a waiting list to have a hysterectomy later this year - to reduce my risk of ovarian cancer.
Despite all this, it's a long, long time since anyone officially discussed my cancer with me.
The last time I had a scan to check for cancer spread around my body was a CT in October 2014. The last time I had any kind of scan was an ultrasound of my tumour (or lack of, to be more precise) in December 2014 after my last chemo. And the last time my cancer was really discussed was at my sign off towards the end of radiotherapy last year. It was a 10 minute appointment where the oncologist gave me my first Tamoxifen prescription, told me I'd be taking it for 10 years, and basically wished me well.
That now feels like it happened to a different person and my 2016 couldn't be more different to my 2014 and 2015.
I am working full time again, project managing my organisation's biggest project, as I should be. Work is generally my biggest and only stress these days which on the one hand is not good but on the other hand is so nice and normal.
My hair has grown back and my next goal is a short ombre bob like Alexa Chung had. I'm now obsessing more over colour than length which for anyone who has lost their hair through chemo will appreciate is a major change for the better.
Also, I, erm, fell in love 🙊🙈. According to my best friends I have become a fluffy, gooey twat, which is a bit embarrassing and I probably need to pull myself together, but I am insanely happy and a big part of it is him and all the fun we are having. I never expected that post-cancer - and everything that comes with it - that someone would love me. I was expecting to end up a Crazy Old Dog Lady. But I've been proven wrong. (Take note, young, single women with cancer.)
My friends are amazing and now I really feel like I am just back to being just one of the gang, rather than The Poor Friend With Cancer. I still take every opportunity to go out and enjoy myself. Since cancer I've not actually completed a single box set, or a single book. I can't sit still and quiet for long enough. I want to go out and see people and get drunk and be silly. I want to go to places I've never been before, and do things I've never done before. I'm ticking things off the Bucket List but it doesn't feel at all like a Bucket List any more. It's more like an "I Want To Try Everything Because I Don't Want To Miss Out" list.
* "Dismay" doesn't really cover it. I feel sick! That cancer bullshit happened to a different person. I'm a different person now and it's not fair that I have to go back in to that world where I don't belong any more. Can they even make you go? What happens if you refuse to go? I'm tempted to find out. I've got the day off work next Wednesday and better things to do than sit in Oncology Hell.
Anyway... You know I like song lyrics. Well, I'll end with some from Sia - "Reaper". The song I will have on repeat for the next week.
Since the end of that active cancer treatment I have remained under the care of all 3 of Leicester's hospitals, with more appointments than I can remember or count. I had a second surgery 11 months ago (mastectomy and reconstruction on my "good" side) to reduce my risk of getting breast cancer again. A third surgery 7 months ago to exchange the temporary implants I had on both sides for permanent ones. And a fourth surgery 3 months ago for nipple reconstruction.
I've spent the last 14 months on Tamoxifen - a tablet I take each night containing a drug that blocks estrogen - to reduce the risk of my cancer returning. I'm pretty much in the menopause as a result. Following a number of appointments with Genetics and Gynaecology over the last few months, I am now on a waiting list to have a hysterectomy later this year - to reduce my risk of ovarian cancer.
Despite all this, it's a long, long time since anyone officially discussed my cancer with me.
The last time I had a scan to check for cancer spread around my body was a CT in October 2014. The last time I had any kind of scan was an ultrasound of my tumour (or lack of, to be more precise) in December 2014 after my last chemo. And the last time my cancer was really discussed was at my sign off towards the end of radiotherapy last year. It was a 10 minute appointment where the oncologist gave me my first Tamoxifen prescription, told me I'd be taking it for 10 years, and basically wished me well.
That now feels like it happened to a different person and my 2016 couldn't be more different to my 2014 and 2015.
I am working full time again, project managing my organisation's biggest project, as I should be. Work is generally my biggest and only stress these days which on the one hand is not good but on the other hand is so nice and normal.
My hair has grown back and my next goal is a short ombre bob like Alexa Chung had. I'm now obsessing more over colour than length which for anyone who has lost their hair through chemo will appreciate is a major change for the better.
Also, I, erm, fell in love 🙊🙈. According to my best friends I have become a fluffy, gooey twat, which is a bit embarrassing and I probably need to pull myself together, but I am insanely happy and a big part of it is him and all the fun we are having. I never expected that post-cancer - and everything that comes with it - that someone would love me. I was expecting to end up a Crazy Old Dog Lady. But I've been proven wrong. (Take note, young, single women with cancer.)
My friends are amazing and now I really feel like I am just back to being just one of the gang, rather than The Poor Friend With Cancer. I still take every opportunity to go out and enjoy myself. Since cancer I've not actually completed a single box set, or a single book. I can't sit still and quiet for long enough. I want to go out and see people and get drunk and be silly. I want to go to places I've never been before, and do things I've never done before. I'm ticking things off the Bucket List but it doesn't feel at all like a Bucket List any more. It's more like an "I Want To Try Everything Because I Don't Want To Miss Out" list.
So you can maybe imagine my "dismay" * when I remembered I have to go for my first ever "check up" at Oncology next week. I have to go back to the place where I went for chemo. The waiting area is the most oppressive and depressing place on the face of the earth. I'll be sitting and sweating there for too long, because inevitably the appointments will be running at least an hour behind. I'll be examined and asked a string of questions to try and determine how worried they should be on a scale of "Nyehhhh Go Home And Try And Forget About It For Another Year Unless You Get Literally Any Symptom Of Anything For More Than Ten Days In Which Case You Need To Let Us Know Immediately" through to "I'm referring you for a Bone scan/CT scan/Biopsy" (aka "Soz, I'd Put Money On You're Going To Die").
* "Dismay" doesn't really cover it. I feel sick! That cancer bullshit happened to a different person. I'm a different person now and it's not fair that I have to go back in to that world where I don't belong any more. Can they even make you go? What happens if you refuse to go? I'm tempted to find out. I've got the day off work next Wednesday and better things to do than sit in Oncology Hell.
Anyway... You know I like song lyrics. Well, I'll end with some from Sia - "Reaper". The song I will have on repeat for the next week.
Don't come for me today
I'm feeling good, let me savour it
Don't come for me today
I'm feeling good, and I remember when
I'm feeling good, let me savour it
Don't come for me today
I'm feeling good, and I remember when
You came to take me away
So close I was to heaven's gates
But, no, baby, no, baby, not today
You tried to track me down
You followed me like the darkest cloud
But, no, baby, no, baby, not today
Oh Reaper
So close I was to heaven's gates
But, no, baby, no, baby, not today
You tried to track me down
You followed me like the darkest cloud
But, no, baby, no, baby, not today
Oh Reaper
So come back when I'm good and old
I got drinks to drink, a man to hold
I got good things to do with my life
I wanna dance in the open breeze
Feel the wind in my hair, hear the ocean sing
I got good things to feel in my life
I got drinks to drink, a man to hold
I got good things to do with my life
I wanna dance in the open breeze
Feel the wind in my hair, hear the ocean sing
I got good things to feel in my life
Don't come for me today
I'm feeling good, let me savour it
I'm feeling good, let me savour it
Sunday, 6 March 2016
TTFN
Writing this one feels a hell of a lot like tempting fate, and I reserve the right to change my mind on any of this at any time if I need but, I want to move on now and to do that I need to offload some baggage...
First of all I owe some apologies.
Sorry to everyone who I have been terrible at keeping in touch with. I am consistently shit at replying to messages and emails. I regularly have good intentions of taking a day out to write back and call back everyone but I fail to get it done every time. No excuses really beyond being a bit tired, a bit forgetful, and often these days just not often being in the mood to talk or think about anything much. During cancer treatment, writing and talking got me through but now it's becoming the last thing I want to do. I'm really sorry for being so rubbish, especially to all the people who regularly get in touch with me even when they hear nothing back.
Sorry in particular to my friend Kayla who has been working her arse off producing a documentary called Vincible about young adult cancer. I've been no help whatsoever. And another sorry in particular to Elliot who has been working his arse off setting up a charity in honour of my friend Rosie who died last year. I've been no help whatsoever.
Another sorry in particular to my friend Danielle who died a few weeks ago. I wanted to put in writing on this blog all about how amazing Danielle was. But I've not been able to face sitting down and writing another one of those posts. Maybe one day I will, but for now, just this: The Crazy Ones by Paloma Faith.
I'm also sorry to the people who have sent in blog posts for the Young Women's Breast Cancer Blog and had to wait ages for me to upload them.
Generally a big, massive sorry to everyone!
Getting cancer turned my life upside down, and at times it broke me. But I am lucky enough to be here now and I will never take it for granted. I'm 1 hair cut, 2 nipple tattoos, a lipofill, and a few months running and dieting away from being finished with fixing up (as best as will be possible) the mess that breast cancer treatment made of my body. The events of the last 19 months have probably changed me forever but I don't want them to be part of my day to day life any more. New me just needs to get settled in "new normal" life.
I'm going to put this blog to bed for a while, also the Young Women's Breast Cancer Blog. I'm leaving most of the online breast cancer groups I've been part of. I'll be unfollowing all the cancer accounts on Twitter and pages on Facebook. I'm not doing any more media stuff either hahahaha (soz Anne Robinson, soz!).
When I'm not working or sleeping, all I want to be doing is having fun with my amazing friends and boyfriend and dog. (BTW you should all expect me to be taking lots of photos. I need to replace all the ones around my house of me in that fucking wig.)
Lots of love, sorry again, and TTFN xx
Sorry in particular to my friend Kayla who has been working her arse off producing a documentary called Vincible about young adult cancer. I've been no help whatsoever. And another sorry in particular to Elliot who has been working his arse off setting up a charity in honour of my friend Rosie who died last year. I've been no help whatsoever.
Another sorry in particular to my friend Danielle who died a few weeks ago. I wanted to put in writing on this blog all about how amazing Danielle was. But I've not been able to face sitting down and writing another one of those posts. Maybe one day I will, but for now, just this: The Crazy Ones by Paloma Faith.
I'm also sorry to the people who have sent in blog posts for the Young Women's Breast Cancer Blog and had to wait ages for me to upload them.
Generally a big, massive sorry to everyone!
Getting cancer turned my life upside down, and at times it broke me. But I am lucky enough to be here now and I will never take it for granted. I'm 1 hair cut, 2 nipple tattoos, a lipofill, and a few months running and dieting away from being finished with fixing up (as best as will be possible) the mess that breast cancer treatment made of my body. The events of the last 19 months have probably changed me forever but I don't want them to be part of my day to day life any more. New me just needs to get settled in "new normal" life.
I'm going to put this blog to bed for a while, also the Young Women's Breast Cancer Blog. I'm leaving most of the online breast cancer groups I've been part of. I'll be unfollowing all the cancer accounts on Twitter and pages on Facebook. I'm not doing any more media stuff either hahahaha (soz Anne Robinson, soz!).
When I'm not working or sleeping, all I want to be doing is having fun with my amazing friends and boyfriend and dog. (BTW you should all expect me to be taking lots of photos. I need to replace all the ones around my house of me in that fucking wig.)
Lots of love, sorry again, and TTFN xx
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