Just to say, I’m still alive!
Wednesday, 9 October 2024
Saturday, 20 March 2021
40!
Probably no one will read this... but just in case... just in case you’re the woman who came across my blog because you have breast cancer and were googling something about chemo or surgery or whatever, and came across this blog, and read some of my posts then saw I haven’t posted in years...
Well this is just a quick post for you to say, I don’t write on this blog any more but I’m still here! As of today I’m a humongous 40 years old. I’ve had a lot of Prosecco and I’m about ready for bed but I’m also alive, and without meaning to tempt fate I am currently living without any evidence of disease (almost 7 years on from diagnosis now).
If you are reading this post in like 2025 and it’s the most recent post it’s hopefully/probably just because a combo of 1. figuring out how to log in to blogger is too much effort, and 2. I haven’t much to say of interest, means I haven’t written anything in a while. I’m probably just sat somewhere eating doughnuts and simultaneously wishing I was skinnier ;-)
If you are that young woman who happened upon this random blog post because you have been diagnosed with breast cancer... I wish you so much strength and best wishes for your treatment. And if you’re in the uk check out YBCN on Facebook. Xxxxxxx
Wednesday, 21 March 2018
Still alive!
The moment I wrote that title I got the heebie jeebies! Tempting fate or what?!
Anyway, that last blog post appeared on my “on this day” thing on The Facebook and I realised I’d meant to do an update following on from that. So here it finally is a year later....
In a nutshell, I’m now 37 and I’m still alive! 🎉🎉🎉
The brain and bone scan malarkey was TRAUMA. The bone scan was first. On the day, a consultant reviewed the images, and saw “something” that made them require more detailed CT/bone scan images of my thorax. No-one would tell me what though and it took two weeks to get the results, during which time I went into full on meltdown... but as a plus side discovered a new drug to add to my collection. Diazepam! Good stuff.
Turns out is was nothing sinister. I just have arthritis in my ribs. That’s not even a thing that happens but it’s basically what I have. I’m a weirdo but who cares. I can’t feel it and it’s not cancer.
Head scan was also fine. I have a brain, and it looks normal.
My oncologist discharged me because she said routine check ups were bad for my mental health, my GP gave me a ton of cocodamols for the pain, and I tried to go away and get on with things.
Over the course of last year I established that menopause is not easy (understatement klaxon), in particular the fatigue, bone pain and hot flushes. I had an occupational health assessment in September. I turned up feeling like I was being a bother and wasting people’s time, but then after I rattled off my recent medical history the doctor’s response was along the lines of “Shit the bedddddd! It’s no wonder you feel like crap, lady.” and then he made a whole load of recommendations about adjustments to work and general life to give myself and my body a bit of a break. The doctor said I could be expect a rough time for another 2 or 3 years which initially horrified me but actually it turned out it’s been really helpful to just readjust my expectations. Instead of just trying to ignore everything and plough on, I’m taking things easy on myself and it makes a difference. I basically have earned thel right to be as lazy as I want. Also I added another new drug to my collection. Zoplicone! 🤤 Because sleep is everything.
Since then I have discovered that switching brand of tamoxifen has massively reduced the bone pain. Fucking tamoxifen! So to anyone out there taking tamoxifen and suffering - try a different brand, see if it makes a difference for you. Also I can advise that while smaller pharmacies will tend to have only one brand in stock, big Boots pharmacies are more likely to have many different brands for this exact reason. Different brands suit different people.
Anyway.... aside from all of that, and my current hangover, life is awesome right now. In 2 months time I’ll be in St Lucia on a holiday that’s been planned and saved up for since August 2016 at which time I genuinely didn’t know if I’d actually still be here in 2018! But I am and I’m on my way to the Caribbean and I’m doing rainforest zipwiring, and watching turtles hatch on the beach, and drinking cocktails at the pool bar! 😍🌴☀️🍹🐢
Anyway, that last blog post appeared on my “on this day” thing on The Facebook and I realised I’d meant to do an update following on from that. So here it finally is a year later....
In a nutshell, I’m now 37 and I’m still alive! 🎉🎉🎉
The brain and bone scan malarkey was TRAUMA. The bone scan was first. On the day, a consultant reviewed the images, and saw “something” that made them require more detailed CT/bone scan images of my thorax. No-one would tell me what though and it took two weeks to get the results, during which time I went into full on meltdown... but as a plus side discovered a new drug to add to my collection. Diazepam! Good stuff.
Turns out is was nothing sinister. I just have arthritis in my ribs. That’s not even a thing that happens but it’s basically what I have. I’m a weirdo but who cares. I can’t feel it and it’s not cancer.
Head scan was also fine. I have a brain, and it looks normal.
My oncologist discharged me because she said routine check ups were bad for my mental health, my GP gave me a ton of cocodamols for the pain, and I tried to go away and get on with things.
Over the course of last year I established that menopause is not easy (understatement klaxon), in particular the fatigue, bone pain and hot flushes. I had an occupational health assessment in September. I turned up feeling like I was being a bother and wasting people’s time, but then after I rattled off my recent medical history the doctor’s response was along the lines of “Shit the bedddddd! It’s no wonder you feel like crap, lady.” and then he made a whole load of recommendations about adjustments to work and general life to give myself and my body a bit of a break. The doctor said I could be expect a rough time for another 2 or 3 years which initially horrified me but actually it turned out it’s been really helpful to just readjust my expectations. Instead of just trying to ignore everything and plough on, I’m taking things easy on myself and it makes a difference. I basically have earned thel right to be as lazy as I want. Also I added another new drug to my collection. Zoplicone! 🤤 Because sleep is everything.
Since then I have discovered that switching brand of tamoxifen has massively reduced the bone pain. Fucking tamoxifen! So to anyone out there taking tamoxifen and suffering - try a different brand, see if it makes a difference for you. Also I can advise that while smaller pharmacies will tend to have only one brand in stock, big Boots pharmacies are more likely to have many different brands for this exact reason. Different brands suit different people.
Anyway.... aside from all of that, and my current hangover, life is awesome right now. In 2 months time I’ll be in St Lucia on a holiday that’s been planned and saved up for since August 2016 at which time I genuinely didn’t know if I’d actually still be here in 2018! But I am and I’m on my way to the Caribbean and I’m doing rainforest zipwiring, and watching turtles hatch on the beach, and drinking cocktails at the pool bar! 😍🌴☀️🍹🐢
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.
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
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.
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:
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
Thursday, 31 December 2015
Potato
My favourite account that I follow on Instagram is health and fitness guru @deliciouslystella....
Haha!
Anyway, I've been reading people's statuses on Facebook today. Everyone is being very sentimental and deep this New Year's Eve and there are some very admirable new year resolutions being made by my friends. Well done and good luck with that!
I thought about it and to be honest I'm pretty happy with my attitude, perspective and priorities in life. There's only one thing about me that I want to change in 2016, and that's my body, which has been completely trashed over the last 18 months - partly from all the chemo, radiotherapy, surgeries, and various drugs, and partly from me being wholeheartedly dedicated to living the Deliciously Stella way in 2015.
This could not be more true:
So, my resolutions are a combination of obvious/bog standard:
1. Eat healthily.
2. Exercise every day.
And a couple that are a little more personal:
3. Stop being lazy and actually use all the various creams/oils etc I have bought (every day) to strengthen nails/moisturise skin/protect hair/fade scars.
4. And seeing as some things will take time to change and some things can't be changed.... Do not allow hatred of body to get in the way of being happy and having fun.
Starting tomorrow.
Happy new year peeps! xxx
Haha!
Anyway, I've been reading people's statuses on Facebook today. Everyone is being very sentimental and deep this New Year's Eve and there are some very admirable new year resolutions being made by my friends. Well done and good luck with that!
I thought about it and to be honest I'm pretty happy with my attitude, perspective and priorities in life. There's only one thing about me that I want to change in 2016, and that's my body, which has been completely trashed over the last 18 months - partly from all the chemo, radiotherapy, surgeries, and various drugs, and partly from me being wholeheartedly dedicated to living the Deliciously Stella way in 2015.
This could not be more true:
1. Eat healthily.
2. Exercise every day.
And a couple that are a little more personal:
3. Stop being lazy and actually use all the various creams/oils etc I have bought (every day) to strengthen nails/moisturise skin/protect hair/fade scars.
4. And seeing as some things will take time to change and some things can't be changed.... Do not allow hatred of body to get in the way of being happy and having fun.
Starting tomorrow.
Happy new year peeps! xxx
Saturday, 19 December 2015
Attitude
I've titled this post "Attitude". What I really wanted to call it was "I'm happy and I love my life and if you don't like it then you can just Fuck. Right. Off." but that seemed a bit too wordy.
Today I've been told I have Stage 4 breast cancer. Stage 4 breast cancer, also known as secondary breast cancer or metastatic breast cancer, is incurable.
Luckily for me the person who dished out this news was just a random person on Twitter, and not any of my actual doctors. This Stage 4 diagnosis that was delivered to me was not based on any scans or tests. It was based purely on a negative attitude.
I sat here and wrote a big, full explanation of what made me write this post and I've just deleted it - because it doesn't really matter. These are the things I want to say that matter:
I had cancer. It was scary. I could have died, but I didn't, and I'm glad I didn't, because I love being alive, and I love my life. Having had cancer I feel this more deeply and strongly than I think I ever could if I had not had cancer. I LOVE BEING ALIVE, AND I LOVE MY LIFE. And I feel that and know that in my heart and in my bones and my gut Every Single Day.
I am happy. I am having fun. I'm excited for my future. Tomorrow, and next week, and next month, and next year. I am plotting and planning all the things I want to do, all the people I want to do them with. I'm going to have fun, and I'm going to try new things, and I'm going to challenge myself, and I'm going to surround myself with people who also want to have fun, and try new things, and challenge themselves too.
I'm not worried about my cancer coming back. I know full well that breast cancer is a nasty, sneaky thing, and the risk of recurrence will always be there. But FFS, I'm not gonna dwell on it! Even if I live til I'm 80, my time is precious. Every single day of it. I'm not going to waste any of it worrying about something that will probably never happen. (If it does, I'll just deal with it then. Probably by getting drunk and inappropriate, but you wouldn't have me any other way, right?!)
I'm not angry that I had cancer. I will be pissed off if it does come back, but unless that happens then I can't really say that it's been a bad thing for me. Don't get me wrong - there have been some difficult and frightening days. And I'm not overjoyed by the weight gain, short hair or scars. But as soon as I'm ok to run again the excess weight will be lost, the hair is already growing, and the scars will fade a little at least. And on a personal level, my cancer has given me much more than it has taken away. So I really don't feel that my own cancer diagnosis is anything to feel angry about.
I do reserve the right to be in a bad mood any time I please. I reserve the right to feel sad, insecure, afraid, annoyed, oversensitive, and irrational any time I please. If it's how I feel it's how I feel. But I also reserve the right to feel happy, and grateful, and excited - and not feel guilty about those feelings. I am rejecting any feelings of "survivor guilt" - the friends I have lost to breast cancer this year would all kick my arse if they could if I were to waste any time feeling guilty for being alive, or for being happy.
My heart is absolutely bursting with buckets and buckets of love for all the wonderful people I am so lucky to have in my life. Old friends, new friends, I love you all to bits.
Good. Glad to get all that off my chest.
I shall now continue dancing round my bedroom singing along to Mariah's greatest hits, looking forward to plenty of fun and silliness over Christmas and in 2016.
And I'll leave you with a few pictures from last weekend which I spent with over 40 other women who have had breast cancer this year. My wonderful friends who know how to enjoy life. (#WeAreTribe)
Today I've been told I have Stage 4 breast cancer. Stage 4 breast cancer, also known as secondary breast cancer or metastatic breast cancer, is incurable.
Luckily for me the person who dished out this news was just a random person on Twitter, and not any of my actual doctors. This Stage 4 diagnosis that was delivered to me was not based on any scans or tests. It was based purely on a negative attitude.
I sat here and wrote a big, full explanation of what made me write this post and I've just deleted it - because it doesn't really matter. These are the things I want to say that matter:
I had cancer. It was scary. I could have died, but I didn't, and I'm glad I didn't, because I love being alive, and I love my life. Having had cancer I feel this more deeply and strongly than I think I ever could if I had not had cancer. I LOVE BEING ALIVE, AND I LOVE MY LIFE. And I feel that and know that in my heart and in my bones and my gut Every Single Day.
I am happy. I am having fun. I'm excited for my future. Tomorrow, and next week, and next month, and next year. I am plotting and planning all the things I want to do, all the people I want to do them with. I'm going to have fun, and I'm going to try new things, and I'm going to challenge myself, and I'm going to surround myself with people who also want to have fun, and try new things, and challenge themselves too.
I'm not worried about my cancer coming back. I know full well that breast cancer is a nasty, sneaky thing, and the risk of recurrence will always be there. But FFS, I'm not gonna dwell on it! Even if I live til I'm 80, my time is precious. Every single day of it. I'm not going to waste any of it worrying about something that will probably never happen. (If it does, I'll just deal with it then. Probably by getting drunk and inappropriate, but you wouldn't have me any other way, right?!)
I'm not angry that I had cancer. I will be pissed off if it does come back, but unless that happens then I can't really say that it's been a bad thing for me. Don't get me wrong - there have been some difficult and frightening days. And I'm not overjoyed by the weight gain, short hair or scars. But as soon as I'm ok to run again the excess weight will be lost, the hair is already growing, and the scars will fade a little at least. And on a personal level, my cancer has given me much more than it has taken away. So I really don't feel that my own cancer diagnosis is anything to feel angry about.
I do reserve the right to be in a bad mood any time I please. I reserve the right to feel sad, insecure, afraid, annoyed, oversensitive, and irrational any time I please. If it's how I feel it's how I feel. But I also reserve the right to feel happy, and grateful, and excited - and not feel guilty about those feelings. I am rejecting any feelings of "survivor guilt" - the friends I have lost to breast cancer this year would all kick my arse if they could if I were to waste any time feeling guilty for being alive, or for being happy.
My heart is absolutely bursting with buckets and buckets of love for all the wonderful people I am so lucky to have in my life. Old friends, new friends, I love you all to bits.
Good. Glad to get all that off my chest.
I shall now continue dancing round my bedroom singing along to Mariah's greatest hits, looking forward to plenty of fun and silliness over Christmas and in 2016.
And I'll leave you with a few pictures from last weekend which I spent with over 40 other women who have had breast cancer this year. My wonderful friends who know how to enjoy life. (#WeAreTribe)
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