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.
Showing posts with label Everything I've learned about.... Show all posts
Showing posts with label Everything I've learned about.... Show all posts
Wednesday, 16 November 2016
Sunday, 29 March 2015
Everything I've learned about... Chemo and hair loss
I originally wrote this post in October - about halfway through chemo. It's now March, and I finished chemo almost 4 months ago. I thought it was about time I updated this because I have some important things to add and change!
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If you want to know how to do cold capping right...
First of all, before I say anything else, if you want the most useful blog post about cold capping on chemo in the world, ever, then head on over to A Lil Earthquake's blog post Keeping my hair through chemo. Diane cold capped through 6 cycles of FEC. FEC is the chemo that REALLY has it in for your beautiful hair. Diane kept most of hers - she followed the rules, took amazing care of her scalp, and was rewarded with great results (unlike me who broke all the rules because I was convinced it wouldn't work, and so probably lost most of my hair due to my own tugging!)
This is Diane's hair after 6 cycles of FEC...
Amazing! Now go and read her blog!
As for me, despite losing most of my hair in the end after chemo, I learned some very important things along the way, and I want to share them here....
My personal perspective and experience
A couple of key things to know from the outset are:
I had 6 cycles of chemo, FEC-T (3 FEC and 3 Tax). I used the cold cap each time. This is a summary of what happened to my hair.
Chemo #1
As the clock struck midnight between days 13 and 14, the hair started dropping out from around my ears. "This is it!" I thought to myself. The cold cap didn't work, and all my hair is all going to come out. I stayed awake til about 3 am, pulling at my hair. The hair by my ears came out very easily, the rest of it did not. Important note: I should not have been pulling at it!
Here's horrendous photo number 1! This is my (greasy) hair that night when it started falling out from by my ears. To me this was disaster.
Over the coming days, I lost more - on the top of my head my parting widened, and at the bottom of my hairline where it meets my neck a fair bit of hair was coming out. Each day, I kept tugging and pulling at it. Important note: I should not have been pulling at it!
Not so horrendous photo number 2. I was so devastated by this at the time I was too embarrassed to show anyone! This was taken at the end of the first cycle of chemo.
I look back at this now and see amazing hair with just a wide parting on the top.
Chemo #2
So to my surprise, the day of my second chemo arrived and apart from the hair by my ears and neckline, and the wide parting, I still had a full head of hair, and went ahead with using the cold cap for a second time.
I lost some more during the second cycle of chemo, but not so much - and with hindsight it was probably all my own fault for constantly tugging at it. The parting on top of my head continued to widen.
Chemo#3
While I'd lost a fair bit of hair, I could still tie it back and cover the ever growing bald patch, so I kept on with the cold cap. By the end of chemo #3 this is where I was at...(it's wet hair, that's not grease!)
Chemo #4
This is a photo of me just after my fourth chemo. To me, my hair was noticeably thin, and I had to tie it back to cover the bald bit... but it was passable, just about. More about the bald patch later on in this post and how I disguised it!
Shortly after this photo was taken I had another big shedding of hair, meaning I could no longer go out without my wig on. However, I did still have a lot of hair left, so I continued using the cold cap for Chemo #5 and Chemo #6. During these two chemos, I lost a bit more of the hair I had round the sides and back, but the hair on the bald patch on top of my head actually started growing back again - another reason why I wanted to continue with the cold cap.
This was the top of my head at the point of Chemo #6.
Hair had been growing since I finished FEC.
Then this was the top of my head about 6 weeks after my last chemo.
And this is my hair at 3 months post chemo. I've not yet had a real haircut - I just chopped what was left of the long bits off myself.
My friends keep telling me to go to the hairdresser and get a pixie cut, and I do have enough hair for that now but I'm not going to, for two reasons. 1. I hate it, I hate me with short hair, and I hate the shape of my head and face. And 2. I have loads of greys and I am trying to be good now and not dye my hair til 6 months post chemo.
Oh and just for information, this is a picture of me in my wig last weekend. I have just had one wig the whole time - I got one as close to my normal hair as possible, and once I got used to wearing it, it's been fine.
"It's only hair" and other pointless things people say
If you're diagnosed with cancer and told you will need to have chemotherapy such as FEC-T, these are some of the facts of your situation:
The reason I'm bringing this up is just to say that if you're losing your hair because of chemo, and you're upset about it, and you want to punch the next person who tells you it's only hair and it's a small price to pay for getting rid of cancer, you're not alone. It's the normal, natural response!
(To anyone reading this who is not having chemo themselves but knows someone who is and is wondering what the right thing to do or say is.... Unless you're about to shave your own hair and eyebrows and remove all eyelashes in solidarity then avoid all of the above platitudes. Simple statements like "This is awful, I'm bringing a bottle of wine round" are likely to be much more helpful.)
Will you definitely lose your hair?
There are lots of different chemo drugs - some cause hair loss, some don't. My experience is with FEC-T which is a common chemo treatment for young women with breast cancer so that's what I'm writing about in this post.
FEC causes hair loss and there's no avoiding it. If you don't use the cold cap, you will lose your hair. Some people find that a very small amount of their hair remains, but this will be maybe 5%, in patches. Many (most?) women decide to shave their heads and be done with it, and feel a great sense of control and relief having done so.
If you use the cold cap then there is a possibility that you will keep a lot of your hair - but it will still thin out. My oncologist told me that if using the cold cap, you have a 50% chance of keeping 50% of your hair. I know some women who have been more successful than this, and have only had minor, and completely unnoticeable thinning. I also know women who have used the cold cap and their hair has all fallen out anyway after their first chemo. I'm somewhere in between the two extremes. The thing is, if using the cold cap, you have to be prepared to just wait and see what happens - it might work, it might not. Hope for the best, prepare for the worst!
When does hair loss happen?
I hadn't really thought about it before starting chemo myself, but unless or until you shave your head, chemo hair loss is a process which takes place over a period of time, not a single event. You don't wake up one morning to find you are suddenly bald.
If you have FEC chemo, and do not use the cold cap, you can almost guarantee to have lost the majority of your hair by the time of your second dose. It happens to people at different times, but it's quite common for the significant shedding to kick in at around day 13-14 after your first blast. This is the point at which many women shave their heads - partly because they are sick of eating their own hair, and partly because your scalp gets very sore - shaving the hair off gives relief to that.
If you have FEC chemo and do use the cold cap, this hair loss still might happen. I know someone who used the cold cap, and during the third week after the initial chemo blast, her hair started coming out in chunks. She was devastated at first - like me she was desperate to keep her hair. But the decision was taken out of her hands, she shaved her head, and the hair loss anxiety was instantly gone. I'm mentioning this because the reality for most people is that the anxiety of losing hair before it happens is far, far worse than dealing with a bald head once you've got one.
My own experience was different. As mentioned above, I didn't have any hair loss until day 13-14 after my initial dose of FEC. I was about to go to bed that night, tucked my hair behind my ear - and a little chunk came out. Argh! This was it! I was sure of it. The moment I had been dreading. I instantly started pulling, and on both sides, the hair in front of/right next to my ears was coming out easily. I would take some between my fingers, and it would just come out. I spent the next couple of hours obsessively pulling my hair - I pulled out loads from next to my ears but the rest of the hair on my head was staying firmly put. I started to have some hope - maybe the cold cap had worked but it had just missed the bits by my ears. Maybe the rest of my hair would be ok! I was given further hope still by the realisation that the hair-by-my-ears hair loss was accompanied by an instantaneous full Brazilian. The hair that was firmly in place on my head was in the clear, wasn't it? Was it? Wasn't it?
Over the next few days, my hair played mind games with me. One day I started losing hair at the top of my head - my parting was widening. Then nothing happened for a day or so. Then the hair by my neck started to give up and fall out. I was constantly stressed, and constantly being told off by my friends for tugging at my hair. But it never got so bad that I shaved my head. I could still cover over any thin patches by tying my hair back. So when I went for my second chemo, I used the cold cap again. 13-14 days after that blast, I was expecting another mass shedding of hair - but it never came. It turns out this is normal, and a really important point:
When cold capping on FEC, the worst hair loss will be 2-3 weeks after your first dose. After that, you will likely have a continued, gradual thinning of hair. But the worst hair loss happens during the third week after your initial chemo. So if you are cold capping on FEC, and lose a lot of hair during this week, but not enough to feel you are ready to shave your head - then I'd say stick it out if you can! I am so glad I did.
When does hair start growing back?
A lot of women, especially those cold capping, find their hair starts growing back when they move off FEC and on to Tax. That's what happened with mine.
What is using the cold cap really like?
I personally tend to refer to it as The Head Freezer rather than Cold Cap. Head Freezer is a more accurate description of the experience! Here is another horrendous photo - this time it's me wearing the cold cap. This was on my last chemo!
There is a rubber hat that covers the whole of your hair, and is attached to a big machine by a pink tube that you can see on the left hand side of the photo. This rubber hat is pumped with cold, icy water, -4 degrees in temperature. Then the black cap thing is pulled over it, and strapped tight under your chin, giving you hamster face. It has to be tight though to work. If the rubber cold cap isn't tight to your scalp, it won't do its job. (The white bits are just some gauze that are there to protect the skin at the edge of my hairline from the cold cap.)
You wear it for different amounts of time, depending on the chemo you are having. On the dose of FEC I had, I had to wear it for 30 minutes before they started administering the drugs, during the administration of drugs (about 45 minutes), and for two hours afterwards. Tax, thankfully, is less! 30 minutes before, about an hour while the drugs are going in, and 45 minutes afterwards.
It's freezing cold. The first ten minutes or so are the worst. Each time, I didn't expect to get through those first ten minutes. But that initial pain does ease off. In fact, the first time, I found it easy after that and was asking them if I could have it colder! The second and third times were much harder, and by the end I was feeling sick with pain, and desperate to get the thing off my head. Both times I think I gave up about ten minutes before the end. Fourth time onwards I took the advice of other YBCN (Younger Breast Cancer Network UK) members and dosed up on ibuprofen and paracetemol before putting the freezer on. I think the combination of that, and the shorter amount of time I needed to keep it on really helped. It was ok.
Anyway, using the cold cap isn't a pleasant experience. But because of the amount of my hair it saved, I kept going with it, and I'm glad I did. It's been worth a few hours of misery every few weeks (hours where, lets face it, I'm miserable as hell anyway because I'm in a chemo suite at the hospital).
Practicalities of using the cold cap, and looking after your hair
Some practical things to be aware of if you're going to be cold capping...
You will need to take these things to the hospital with you: conditioner, a hairbrush/comb, a small spray bottle which can be filled with water and used to spray your hair to wet it. Choose a conditioner that isn't your favourite. Trust me - after a few sessions that conditioner will be firmly associated with chemo and the cold cap and you'll never want to smell it again. (The smell of my old conditioner now makes me feel sick.)
Before putting the cold cap on, the nurse will spray your hair with water to wet it, then put conditioner all over it. This is because the cold cap is rubber - when it comes to taking it off at the end, it comes off much more easily if you've got conditioner on your hair. (You don't want to freeze your head for hours only to have the rubber cold cap rip your hair out anyway!)
When cold capping throughout chemo you have to be extremely, extremely kind to your scalp. This means:
This horrified me! My hair was used to being washed, dried, and straightened every day! I was gutted - what's the point of keeping hair if it's greasy and you can't do anything with it?! Anyway, the first few washes were about 4-5 days apart rather than a week, but after then I did as I was told. And my hair quickly got used to not being washed. It would be ok for about 5 days before it started to look even the tiniest bit rank.
Looking after your scalp is really important. It's about giving your follicles every chance to recover from any chemo damage. It doesn't appear to be all or nothing, either the follicle is blasted by chemo or it isn't. There might be follicles that have had a hammering from chemo, but with care, can recover. So be as kind and gentle to your scalp as you can.
Shampoo
General advice is to use a gentle, unperfumed shampoo. But so many women in YBCN swear by the Lush shampoo bar called New which is supposed to encourage new hair growth. It's pink, and smells of cinnamon. It only costs a few quid and will last months and months and months. I used it for my once-weekly hair wash and I'm still using it now. Hair is growing!
Covering up bald patches - the magic that is Toppik
As you now know, I had a humungous bald patch on top of my head. I took photos of it at various stages to share with other YBCN members and compare notes. I was never, ever intending to share any of those photos on this blog initially but now I don't care. I want to show how even the most enormous bald patch can be dealt with! If it helps anyone else who is facing chemo hair loss, then I figured it's worth my own embarrassment.
They aren't actually great photos - they were just taken quickly for a discussion in the YBCN group, but you should still get the idea.
Here is the monstrosity that was the top of my head at some point during the 4th chemo cycle.
Fucking chemo! Fucking, bollocking, bastard cancer and bastard fucking chemo! Fuck!
But anyway! Turns out it wasn't the end of the world. I found out about a product called Toppik. I guess it was originally developed for men who are starting to bald and can't cope with it! But it works a treat for us chemo girls too!
Toppik is "hair building fibres". Translation: powder in a pot that you sprinkle on your head to hide a bald patch. I have it in dark brown. This is what the pot looks like and you can order online.
And the powder itself looks like this:
And once my hair was tied back, this is how the top of my head looked:
So, you see? Even a bald patch the size of Wales can be hidden quite effectively! So the cold cap doesn't need to be 100% successful to be worthwhile (in my opinion).
One final thing...
One final thing - if you are going to have chemo and are stressed about hair loss and have any questions that haven't been answered here, you are very welcome to contact me either via this blog, or via Twitter @mulheron81. I know how stressful it is! And if you are under 45 years old with a breast cancer diagnosis and living in the UK, then I recommend you join the YBCN group on Facebook. The support is amazing - it'll get you through this! You can find the public page here. Send them a message and you'll get instructions about how to be added to and find the secret, private support group.
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If you want to know how to do cold capping right...
First of all, before I say anything else, if you want the most useful blog post about cold capping on chemo in the world, ever, then head on over to A Lil Earthquake's blog post Keeping my hair through chemo. Diane cold capped through 6 cycles of FEC. FEC is the chemo that REALLY has it in for your beautiful hair. Diane kept most of hers - she followed the rules, took amazing care of her scalp, and was rewarded with great results (unlike me who broke all the rules because I was convinced it wouldn't work, and so probably lost most of my hair due to my own tugging!)
This is Diane's hair after 6 cycles of FEC...
Amazing! Now go and read her blog!
As for me, despite losing most of my hair in the end after chemo, I learned some very important things along the way, and I want to share them here....
My personal perspective and experience
A couple of key things to know from the outset are:
- I am someone who would have done literally anything to avoid shaving their head. I am full of admiration for the many young women facing chemo who are brave enough to take control and just shave their heads and be done with it. But it turned out, I am not one of those women.
- I've been completely honest in this post, and I'm writing as someone who found hair loss traumatic, so if you're reading this because you're starting chemo and are anxious about hair loss, be aware this post isn't intended to cheer you up no matter what - it's intended to tell you the truth, no sugar coating! Having said that, I hope that ultimately this might cheer you up - not because I'm going to throw loads of motivational, empowering quotes at you, but because of the info I will share that might actually be useful.
I had 6 cycles of chemo, FEC-T (3 FEC and 3 Tax). I used the cold cap each time. This is a summary of what happened to my hair.
Chemo #1
As the clock struck midnight between days 13 and 14, the hair started dropping out from around my ears. "This is it!" I thought to myself. The cold cap didn't work, and all my hair is all going to come out. I stayed awake til about 3 am, pulling at my hair. The hair by my ears came out very easily, the rest of it did not. Important note: I should not have been pulling at it!
Here's horrendous photo number 1! This is my (greasy) hair that night when it started falling out from by my ears. To me this was disaster.
Over the coming days, I lost more - on the top of my head my parting widened, and at the bottom of my hairline where it meets my neck a fair bit of hair was coming out. Each day, I kept tugging and pulling at it. Important note: I should not have been pulling at it!
Not so horrendous photo number 2. I was so devastated by this at the time I was too embarrassed to show anyone! This was taken at the end of the first cycle of chemo.
I look back at this now and see amazing hair with just a wide parting on the top.
Chemo #2
So to my surprise, the day of my second chemo arrived and apart from the hair by my ears and neckline, and the wide parting, I still had a full head of hair, and went ahead with using the cold cap for a second time.
I lost some more during the second cycle of chemo, but not so much - and with hindsight it was probably all my own fault for constantly tugging at it. The parting on top of my head continued to widen.
Chemo#3
While I'd lost a fair bit of hair, I could still tie it back and cover the ever growing bald patch, so I kept on with the cold cap. By the end of chemo #3 this is where I was at...(it's wet hair, that's not grease!)
Chemo #4
This is a photo of me just after my fourth chemo. To me, my hair was noticeably thin, and I had to tie it back to cover the bald bit... but it was passable, just about. More about the bald patch later on in this post and how I disguised it!
This was the top of my head at the point of Chemo #6.
Hair had been growing since I finished FEC.
Then this was the top of my head about 6 weeks after my last chemo.
And this is my hair at 3 months post chemo. I've not yet had a real haircut - I just chopped what was left of the long bits off myself.
Oh and just for information, this is a picture of me in my wig last weekend. I have just had one wig the whole time - I got one as close to my normal hair as possible, and once I got used to wearing it, it's been fine.
So anyway, that's a quick summary of what happened to my hair from day 1 of chemo up til now, nearly 4 months on. What follows is a bunch of stuff I learned along the way (including how to cover a bald patch!)
"It's only hair" and other pointless things people say
If you're diagnosed with cancer and told you will need to have chemotherapy such as FEC-T, these are some of the facts of your situation:
- You will need to do whatever it takes to get rid of the cancer.
- You're very likely to temporarily lose your hair as a result of chemotherapy.
- In the grand scheme of things, keeping your hair is not nearly as important as getting rid of the cancer.
- It's only hair!
- It'll grow back!
- You'll rock the skinhead look!
- You can have loads of fun with different wigs and hairstyles!
- How exciting! Now you could go blonde!
- Think of all the time you'll save not having to wash your hair!
The reason I'm bringing this up is just to say that if you're losing your hair because of chemo, and you're upset about it, and you want to punch the next person who tells you it's only hair and it's a small price to pay for getting rid of cancer, you're not alone. It's the normal, natural response!
(To anyone reading this who is not having chemo themselves but knows someone who is and is wondering what the right thing to do or say is.... Unless you're about to shave your own hair and eyebrows and remove all eyelashes in solidarity then avoid all of the above platitudes. Simple statements like "This is awful, I'm bringing a bottle of wine round" are likely to be much more helpful.)
Will you definitely lose your hair?
There are lots of different chemo drugs - some cause hair loss, some don't. My experience is with FEC-T which is a common chemo treatment for young women with breast cancer so that's what I'm writing about in this post.
FEC causes hair loss and there's no avoiding it. If you don't use the cold cap, you will lose your hair. Some people find that a very small amount of their hair remains, but this will be maybe 5%, in patches. Many (most?) women decide to shave their heads and be done with it, and feel a great sense of control and relief having done so.
If you use the cold cap then there is a possibility that you will keep a lot of your hair - but it will still thin out. My oncologist told me that if using the cold cap, you have a 50% chance of keeping 50% of your hair. I know some women who have been more successful than this, and have only had minor, and completely unnoticeable thinning. I also know women who have used the cold cap and their hair has all fallen out anyway after their first chemo. I'm somewhere in between the two extremes. The thing is, if using the cold cap, you have to be prepared to just wait and see what happens - it might work, it might not. Hope for the best, prepare for the worst!
When does hair loss happen?
I hadn't really thought about it before starting chemo myself, but unless or until you shave your head, chemo hair loss is a process which takes place over a period of time, not a single event. You don't wake up one morning to find you are suddenly bald.
If you have FEC chemo, and do not use the cold cap, you can almost guarantee to have lost the majority of your hair by the time of your second dose. It happens to people at different times, but it's quite common for the significant shedding to kick in at around day 13-14 after your first blast. This is the point at which many women shave their heads - partly because they are sick of eating their own hair, and partly because your scalp gets very sore - shaving the hair off gives relief to that.
If you have FEC chemo and do use the cold cap, this hair loss still might happen. I know someone who used the cold cap, and during the third week after the initial chemo blast, her hair started coming out in chunks. She was devastated at first - like me she was desperate to keep her hair. But the decision was taken out of her hands, she shaved her head, and the hair loss anxiety was instantly gone. I'm mentioning this because the reality for most people is that the anxiety of losing hair before it happens is far, far worse than dealing with a bald head once you've got one.
My own experience was different. As mentioned above, I didn't have any hair loss until day 13-14 after my initial dose of FEC. I was about to go to bed that night, tucked my hair behind my ear - and a little chunk came out. Argh! This was it! I was sure of it. The moment I had been dreading. I instantly started pulling, and on both sides, the hair in front of/right next to my ears was coming out easily. I would take some between my fingers, and it would just come out. I spent the next couple of hours obsessively pulling my hair - I pulled out loads from next to my ears but the rest of the hair on my head was staying firmly put. I started to have some hope - maybe the cold cap had worked but it had just missed the bits by my ears. Maybe the rest of my hair would be ok! I was given further hope still by the realisation that the hair-by-my-ears hair loss was accompanied by an instantaneous full Brazilian. The hair that was firmly in place on my head was in the clear, wasn't it? Was it? Wasn't it?
Over the next few days, my hair played mind games with me. One day I started losing hair at the top of my head - my parting was widening. Then nothing happened for a day or so. Then the hair by my neck started to give up and fall out. I was constantly stressed, and constantly being told off by my friends for tugging at my hair. But it never got so bad that I shaved my head. I could still cover over any thin patches by tying my hair back. So when I went for my second chemo, I used the cold cap again. 13-14 days after that blast, I was expecting another mass shedding of hair - but it never came. It turns out this is normal, and a really important point:
When cold capping on FEC, the worst hair loss will be 2-3 weeks after your first dose. After that, you will likely have a continued, gradual thinning of hair. But the worst hair loss happens during the third week after your initial chemo. So if you are cold capping on FEC, and lose a lot of hair during this week, but not enough to feel you are ready to shave your head - then I'd say stick it out if you can! I am so glad I did.
When does hair start growing back?
A lot of women, especially those cold capping, find their hair starts growing back when they move off FEC and on to Tax. That's what happened with mine.
What is using the cold cap really like?
I personally tend to refer to it as The Head Freezer rather than Cold Cap. Head Freezer is a more accurate description of the experience! Here is another horrendous photo - this time it's me wearing the cold cap. This was on my last chemo!
There is a rubber hat that covers the whole of your hair, and is attached to a big machine by a pink tube that you can see on the left hand side of the photo. This rubber hat is pumped with cold, icy water, -4 degrees in temperature. Then the black cap thing is pulled over it, and strapped tight under your chin, giving you hamster face. It has to be tight though to work. If the rubber cold cap isn't tight to your scalp, it won't do its job. (The white bits are just some gauze that are there to protect the skin at the edge of my hairline from the cold cap.)
You wear it for different amounts of time, depending on the chemo you are having. On the dose of FEC I had, I had to wear it for 30 minutes before they started administering the drugs, during the administration of drugs (about 45 minutes), and for two hours afterwards. Tax, thankfully, is less! 30 minutes before, about an hour while the drugs are going in, and 45 minutes afterwards.
It's freezing cold. The first ten minutes or so are the worst. Each time, I didn't expect to get through those first ten minutes. But that initial pain does ease off. In fact, the first time, I found it easy after that and was asking them if I could have it colder! The second and third times were much harder, and by the end I was feeling sick with pain, and desperate to get the thing off my head. Both times I think I gave up about ten minutes before the end. Fourth time onwards I took the advice of other YBCN (Younger Breast Cancer Network UK) members and dosed up on ibuprofen and paracetemol before putting the freezer on. I think the combination of that, and the shorter amount of time I needed to keep it on really helped. It was ok.
Anyway, using the cold cap isn't a pleasant experience. But because of the amount of my hair it saved, I kept going with it, and I'm glad I did. It's been worth a few hours of misery every few weeks (hours where, lets face it, I'm miserable as hell anyway because I'm in a chemo suite at the hospital).
Practicalities of using the cold cap, and looking after your hair
Some practical things to be aware of if you're going to be cold capping...
You will need to take these things to the hospital with you: conditioner, a hairbrush/comb, a small spray bottle which can be filled with water and used to spray your hair to wet it. Choose a conditioner that isn't your favourite. Trust me - after a few sessions that conditioner will be firmly associated with chemo and the cold cap and you'll never want to smell it again. (The smell of my old conditioner now makes me feel sick.)
Before putting the cold cap on, the nurse will spray your hair with water to wet it, then put conditioner all over it. This is because the cold cap is rubber - when it comes to taking it off at the end, it comes off much more easily if you've got conditioner on your hair. (You don't want to freeze your head for hours only to have the rubber cold cap rip your hair out anyway!)
When cold capping throughout chemo you have to be extremely, extremely kind to your scalp. This means:
- Only washing your hair once a week at most, in luke warm water.
- No hairdryer, no straighteners.
- No products other than a very, very gentle shampoo.
This horrified me! My hair was used to being washed, dried, and straightened every day! I was gutted - what's the point of keeping hair if it's greasy and you can't do anything with it?! Anyway, the first few washes were about 4-5 days apart rather than a week, but after then I did as I was told. And my hair quickly got used to not being washed. It would be ok for about 5 days before it started to look even the tiniest bit rank.
Looking after your scalp is really important. It's about giving your follicles every chance to recover from any chemo damage. It doesn't appear to be all or nothing, either the follicle is blasted by chemo or it isn't. There might be follicles that have had a hammering from chemo, but with care, can recover. So be as kind and gentle to your scalp as you can.
Shampoo
General advice is to use a gentle, unperfumed shampoo. But so many women in YBCN swear by the Lush shampoo bar called New which is supposed to encourage new hair growth. It's pink, and smells of cinnamon. It only costs a few quid and will last months and months and months. I used it for my once-weekly hair wash and I'm still using it now. Hair is growing!
Covering up bald patches - the magic that is Toppik
As you now know, I had a humungous bald patch on top of my head. I took photos of it at various stages to share with other YBCN members and compare notes. I was never, ever intending to share any of those photos on this blog initially but now I don't care. I want to show how even the most enormous bald patch can be dealt with! If it helps anyone else who is facing chemo hair loss, then I figured it's worth my own embarrassment.
They aren't actually great photos - they were just taken quickly for a discussion in the YBCN group, but you should still get the idea.
Here is the monstrosity that was the top of my head at some point during the 4th chemo cycle.
Fucking chemo! Fucking, bollocking, bastard cancer and bastard fucking chemo! Fuck!
But anyway! Turns out it wasn't the end of the world. I found out about a product called Toppik. I guess it was originally developed for men who are starting to bald and can't cope with it! But it works a treat for us chemo girls too!
Toppik is "hair building fibres". Translation: powder in a pot that you sprinkle on your head to hide a bald patch. I have it in dark brown. This is what the pot looks like and you can order online.
Take the lid off and you will see that there is a top designed for sprinkling, kind of like herbs. And the powder itself looks like this:
Doesn't look particularly impressive! But when you sprinkle it on your bald patch, this is what happens (allow for me not making an effort to take a "good" photo or actually brush my hair and make it look neat):And once my hair was tied back, this is how the top of my head looked:
So, you see? Even a bald patch the size of Wales can be hidden quite effectively! So the cold cap doesn't need to be 100% successful to be worthwhile (in my opinion).
One final thing...
One final thing - if you are going to have chemo and are stressed about hair loss and have any questions that haven't been answered here, you are very welcome to contact me either via this blog, or via Twitter @mulheron81. I know how stressful it is! And if you are under 45 years old with a breast cancer diagnosis and living in the UK, then I recommend you join the YBCN group on Facebook. The support is amazing - it'll get you through this! You can find the public page here. Send them a message and you'll get instructions about how to be added to and find the secret, private support group.
Wednesday, 4 March 2015
Everything I've learned about... Hot flushes
Breast cancer - the gift that keeps on giving, right?!
If you have chemo for breast cancer, take drugs such as Tamoxifen after breast cancer treatment, or have your ovaries shut down or removed then you're probably in for the treat that is HOT FLUSHES! Not only do us breast cancer gals get hot flushes but we are likely to have more severe and frequent hot flushes than women who are going through a natural menopause. Lucky us!
Mine started towards the end of chemo, and at times have been hell. The internet tells you that they can last between a few seconds and ten minutes, and frequency may be from every hour to a couple of times a week but I've had phases where I've had flushes every ten minutes or more, and times when I had some severe chills mixed in too - however, I think the worst times might have been because of other drugs such as general anaesthetic.
There are two things to consider to make it all a bit better: what you can do to reduce the number and severity of hot flushes, and what you can do to deal with hot flushes when they happen.
Reducing the number and severity of hot flushes
I honestly don't know what really works but the general advice is:
- Reduce your caffeine intake (thanks a lot cancer, taking away the lushness that is a cup of tea. Sod it then, I'll have a beer instead. Oh... wait....)
- Reduce your alcohol intake (dammit!)
- Exercise regularly (easier said than done if you are actually going through chemo or have recently had surgery)
- Reduce stress (Haha! Easier said than done when you've GOT CANCER!)
- I have discovered that Kalms (herbal tablets for helping with stress and anxiety) claim to help reduce hot flushes.
- (You can talk to your GP about medication they might be able to prescribe you. I won't bother going in to the types here - there are various and what you can have, if anything, will depend entirely on your own personal circumstances. Discuss with your GP!)
Dealing with hot flushes
After a few months of trial and error I've found what works for me...
I'm writing this in the middle of winter. My winter duvet was put away long ago. No good! Much better is the extra thin summer duvet and a couple of blankets. Depending on where I am on he heat scale I can easily have the right amount of covers. I also sleep in shorts and t-shirt. My lovely, snuggly PJs are no longer my friend! (Maybe I'll be back in them next winter.)
I also have a little spray bottle of water next to my bed. Hot flush in the night? Spray water on your face! Works a treat. I wish I could do this any time of the day but a wet face isn't a good look for work.
I also have a couple of chillow pillows. They work by some sort of inexplicable magic and are cold all the time (they just are, no need to put them in a fridge or anything like that). You can put them in with your normal pillow but I think they're too cold for that! I just hug one if I have a really bad hot flush. I've currently got one on my bed and one on my sofa but I might take one of them in to work and cuddle it when I get too hot in the office!
At work I've swapped desks with a kind colleague so I have a desk by a window, and I also have a desk fan which is switched on and off and on and off and on and off throughout the day.
I've also learned to not wear thick or warm clothes even though it's winter. Thin layers are much better - not only because you can add and remove layers depending on how hot or not you feel, but also I'm pretty sure warm clothes cause hot flushes now. Like my lovely, snuggly pjs, some of my lovely, woolly winter clothes are stuck on their hangers, no good to me this year! Oh well.
And for those times when I can't drench my face or hug my chillow pillow or remove any more clothes.... I'll grab anything that will work as a fan and flap it frantically in front of my face.
At some point they'll stop. But in the meantime I think I've got it sussed.
Saturday, 24 January 2015
Everything I've learned about... Mastectomy with LD Flap reconstruction
12 days ago I had a mastectomy with LD flap reconstruction. I thought it might be useful to others who will be having the same or similar surgery to make a note of some of the information I found out beforehand that was useful to me, and things that I discovered along the way!
The exact details of my surgery
I had a skin sparing mastectomy of my left breast (but lost the nipple - the cancer was right beneath it) and full axillary node clearance, with immediate reconstruction using LD Flap (Latissimus Dorsi) and an expander implant. This post is probably most useful to anyone having a skin sparing mastectomy with immediate LD Flap recon - whether or not you're having lymph nodes removed, and whether or not you are having an expander implant too (and probably whether or not you are keeping your nipple). But many bits of it might be useful to anyone having any kind of mastectomy or breast reconstruction.
Useful things to know in advance!
Don't worry
The first thing to know is, my personal experience of surgery was really good. Far less scary and painful than I imagined! I wrote about surgery and my time in hospital here. Have a read if you are anxious - hopefully it might help to put your mind at rest a bit.
Pain
My experience has been it's honestly not that bad. I imagined it to be horrendous. I thought I'd be in agony and unable to move, for at least a week. Not the case! I've been regularly taking painkillers, and they've been doing a great job. In hospital that was paracetamol, ibuprofen and codeine with occasional tramadol, and at home I am taking paracetamol, ibuprofen and occasional tramadol. For the first 16 hours or so after surgery I was hooked up to morphine on an IV - which meant I could get a little hit of morphine whenever I pressed the button they gave me. I say "whenever" - you can press it as much as you like but I think it only lets you actually have some every 5 minutes. I pressed the button 17 times and several of those were in the recovery room in the hour immediately after surgery when they kept encouraging me to! I just didn't really need it. (Partly I think because they give you some local anaesthetics just before you come round from surgery which numbs the area for a number of hours afterwards.)
The kind of pain I have had is mostly soreness. For the first 5 or 6 days a lot of the area under my arm and at the side of my chest was actually quite numb (On day 4 when the nurse removed one of my drains I couldn't even feel her touching my skin). Over the last few days the sensation has been coming back, and with that some additional soreness, but it's nothing terrible.
I had occasions with very sharp and intense pain in my back as a result of my back drain (more on that below) but these were very short, sharp bursts of pain where I think the drain may have been hitting a nerve. Not nice but only lasted a few seconds.
The underneath of the top half of my arm is sore to the touch - I asked my surgeon about it. It's because a main nerve that goes into your arm gets knocked about a bit during surgery (unavoidable). This will heal after time. (My friend Heather who has had this surgery said it lasted about a month. It's nothing unbearable, just a bit sore to touch.)
And then I have had random instances of sharp or shooting kinds of pains, and some aches - but again, nothing unbearable.
Overall, considering the surgery I have had, the pain has been far less than I ever expected it to be. Don't worry about pain!
Oh! PS - this is not pain but a strange feeling. You can feel after about a week like you are carrying a book under your arm. It's a strange feeling and hard to describe but once you get it you'll know what I mean. That's normal - something to do with a rearranged tendon and it goes away in time.
Wounds/Scars
It's early days for me - I'm only day 12 post surgery, so I've only had one brief look at wounds before dressings have been put back on. But what I saw blew my mind! So neat!
Because I needed to lose my nipple, the surgeon cut around the areola and removed that section. So I will have a circular scar there. What he cut out has been replaced with skin from my back (attached underneath to blood vessels under my armpit, to keep it alive. Very clever stuff). It's looking pretty good! The skin from my back almost matches the skin from my front, so I expect a very neat scar, and can have a 3D nipple tattooed in the circle. It will never be quite the same as it was before, but honestly, it's pretty amazing. I've been taking any opportunity to whip it out and show my friends and they're all suitably impressed and amazed!
I also have a line scar in my armpit, around 5cm long I think - this was needed for the axillary node clearance. If I didn't have lymph nodes removed I'm not sure whether the surgeon would have needed to go in here and whether there would be a scar at all.
And on my back I have a line scar which almost (not quite) follows where the back of my bra goes across my back (where the surgeon went in to access the latissimus dorsi muscle on my back, and where skin was taken to replace the nipple/areola area of my breast). This scar is about 15cm long.
As I said, it all looks incredibly neat. I don't feel upset about the wounds/scars in any way.
I also had 3 drains in (I'll come on to drains next) - one in my armpit, one at the side of my left breast and one in my back (at the side of my back). The tubes for drains are small, but I guess they might leave small scars (maybe like a chicken pox scar).
Drains
One thing a lot of people worry about, myself included, is having drains in. It's really not that bad! The drains are bottles that are attached to tubes that go into your body. You're likely to have them in for between 5-7 days. They are held in place by stitches (so you'd really need to tug very hard at them for them to have any chance of coming out). It's not pretty but for the sake of information, here's a photo of two of mine, fluid and all! (Ew!)
Don't worry when you start to see lumps in them too! Gross! But completely normal!
Sitting and lying comfortably
You know what? It's not that bad! In hospital I found the hospital bed to be really comfortable. It was all sorts of adjustable, and each day when the bed was remade I seemed to have a different assortment of pillows. But I think the standard number I used was 2-3. The main thing that annoyed me was not being able to sleep on my side for a few days. (Sleeping on my back was fine, it didn't hurt my back wound at all, it's just that I'm normally a side sleeper).
One day I managed to roll on to my right side, but couldn't roll back again. My orange "Help!" button was behind me and I couldn't reach it. The Ward reception desk was right by my room but I was too embarrassed to call out. So I lay there for about an hour til I managed to roll over on to my back, at which point a nurse came in about lunch, and I started to cry, haha! Other than that though, I had no bed/pillow related issues.
Before I went in to hospital I had prepared my bed at home with every kind of pillow and cushioning I could think of. I had a wall of normal pillows at the back, a V pillow in the middle, and cushions to the side. I had been imagining myself needing to be propped very carefully all around by the softest stuff possible. By the time I was back home (day 5) I was lying on my back with my usual one pillow, sometimes venturing on to my right (non-surgery) side with my usual one pillow under my head and a heart cushion under my surgery arm (more on the heart cushion below). It's now 12 days after surgery and I can almost lie on my non surgery side although I'm avoiding it as much as possible. (I just miss it! It's my preferred side to sleep on!)
The heart cushion!
My friend Heather who had LD Flap recon recently gave me this heart cushion. She got it from the hospital where she had her operation. It wedges under your arm (the side you had surgery). I didn't use it in hospital and started to wonder why Heather had needed it - but with hindsight I realise that's because at that point that whole area was still pretty numb. As the feeling started to return, the pain went up a level. The heart cushion is brilliant for wedging under your arm when it's sore - not sure why but it really helps. It's also great for wedging under your arm when you want to lie on your other side - again not sure why but for me it just made it so much more comfortable and took away some pain. (I did a quick check and if you google something like "breast surgery heart cushion" you'll come up with various places selling them.)
So plan on spending several weeks wearing tops that button up or zip up. You won't be pulling any t-shirts over your head in the early days! Button up PJs/nightshirts, button up shirts/cardigans, zip up hoodies. And possibly vest tops that you can step in to and pull up, rather than put over your head.
You don't need to get anything particularly oversize, as long as clothes aren't skin tight there will be enough room in them for dressings and drains - they really don't add much bulk at all. (I bought several things a size large and didn't need to.)
Hospitals tend to be pretty warm, so try and take pjs/nightshirts that are fairly thin and maybe some short sleeve options, rather than anything of a cosy, fleecy variety. (Especially if, like me, you are still getting chemo-induced hot flushes. I spent half my time in hospital hugging my chillow pillow!)
And don't worry about your clothes getting covered in blood and bodily fluids. I was convinced that with that amount of surgery my clothes would inevitably end up with gross stuff on them, that I'd be leaking and oozing all over the place. Not at all. (Literally, not at all.)
Oh and the big question.... what knickers do you wear for surgery? It probably doesn't matter! Due to the length of surgery they're likely to put a catheter in so you'll either be given paper hospital pants to wear, or whatever you are wearing will be taken off and given back to you after surgery in a little plastic bag! If in doubt, go with plain cotton ones!
Bra
I was told to get a non-wired, front fastening sports bra. The only non-wired front fastening sports bras I could find were proper sporty sports bras, high impact, restrictive (not quite gentle enough for immediately after an op). So on advice from the woman in M&S I got a 2 pack non-wired, medium impact sports bra which fastened at the back (with 3 widths) like a normal bra. These have done me just fine. (Image below is of what I bought, not just a random bra model!)
The first couple of days I didn't need to wear it, then the next few days in hospital I had the nurse help with doing it up/undoing it when they needed to do wound checks or I needed to wash. And then when you're home and have drains in you can either get someone to help you with it, or if there's no one to help, just pull it down to wash then pull it back up again - you'll be back in the hospital 2 or 3 days later for wound checks and dressing changes so can get help from a nurse again then. And once your drains are out it's easy to do it up at the front and then twizzle it round.
You have to wear it all the time (ALL the time) for weeks and weeks. To help support all that rearranged tissue while it knits back together in its new home. But the ones I bought have been comfy (I think cos they're non-wired).
Don't be fooled by things labelled "post-surgery bras". They aren't for supporting you immediately after surgery. They're the ones that have pockets for prostheses if you've had a mastectomy and no reconstruction.
Washing
You need to keep the wounds and dressings completely dry after surgery, so you can't shower. I'm currently day 12 after my operation and I think the dressings are coming off for good on day 19. I think it's then that I can have a shower. So be prepared to stand in front of a sink and wash with a flannel for 2-3 weeks. I also took baby wipes in to the hospital, although didn't really use them much as I was mobile and well enough to wash in front of the sink in the bathroom. I didn't bother washing my hair when I was in hospital (just kept the headscarf on) but I have been fine washing it in the sink myself since I got home.
Things to take in to hospital
I can't guarantee that I haven't forgotten anything! But here are some of the things I found it useful to have in hospital.
The obvious:
The obvious but with notes:
The less obvious:
Care in the few weeks after surgery
I live alone so I arranged to have my friends take it in turns to come and stay and help me out. You need help for two main reasons:
Beyond Week 2!
An update from me 4 weeks after surgery....
I'm still off work and at home but I can do a lot more for myself now, as long as I'm careful. I'm still avoiding lifting anything heavy - I notice it feels wrong if I try (for example I tried to lift a carrier bag with 12 small tins of dog food in it yesterday - I just put it straight down again as I could feel the strain!). I can cook and wash up as long as I avoid any big or heavy pans.
The dressings all came off after three weeks so I can bath and shower - it feels great! I'm using Sanex Zero as it has no perfume or anything like that. And I'm now covering myself in e45 cream as often as I can where the surgery was - ready for radiotherapy.
I did stop taking painkillers after the first couple of weeks but my surgeon has told me to keep taking them for a while as I'm still sore especially with certain kinds of movement (eg leaning/bending down, walking out and about). And I'm VERY tired! I am sleeping A LOT. I was a bit worried about this ("do I have post cancer fatigue? eurgh that's the last thing I want!") til my surgeon lectured me about how young people are always too impatient with recovery from surgery. He reminded me it's major surgery - my body is used to being fit and healthy, not dealing with such a large amount of healing - the external wounds are the tip of the iceberg, there's a lot of healing taking place inside right now. Plus I had chemo before. He said give myself a break, take the painkillers and rest for some more weeks. He said it won't feel completely "normal" for 4-5 months.
The wounds are now scars and they look great - they've healed really well and are very neat. I'm happy!
I'm still in button up clothes, and I'm still taking up offers of help with shopping, cooking and cleaning from my friends, and I'm resting as much as I can.... but I feel like I'm getting a bit better every day. I hope it continues and I'm back to normal life soon!
Questions?
If you have any questions please leave a comment below and I will respond as soon as I can
The exact details of my surgery
I had a skin sparing mastectomy of my left breast (but lost the nipple - the cancer was right beneath it) and full axillary node clearance, with immediate reconstruction using LD Flap (Latissimus Dorsi) and an expander implant. This post is probably most useful to anyone having a skin sparing mastectomy with immediate LD Flap recon - whether or not you're having lymph nodes removed, and whether or not you are having an expander implant too (and probably whether or not you are keeping your nipple). But many bits of it might be useful to anyone having any kind of mastectomy or breast reconstruction.
Useful things to know in advance!
Don't worry
The first thing to know is, my personal experience of surgery was really good. Far less scary and painful than I imagined! I wrote about surgery and my time in hospital here. Have a read if you are anxious - hopefully it might help to put your mind at rest a bit.
Pain
My experience has been it's honestly not that bad. I imagined it to be horrendous. I thought I'd be in agony and unable to move, for at least a week. Not the case! I've been regularly taking painkillers, and they've been doing a great job. In hospital that was paracetamol, ibuprofen and codeine with occasional tramadol, and at home I am taking paracetamol, ibuprofen and occasional tramadol. For the first 16 hours or so after surgery I was hooked up to morphine on an IV - which meant I could get a little hit of morphine whenever I pressed the button they gave me. I say "whenever" - you can press it as much as you like but I think it only lets you actually have some every 5 minutes. I pressed the button 17 times and several of those were in the recovery room in the hour immediately after surgery when they kept encouraging me to! I just didn't really need it. (Partly I think because they give you some local anaesthetics just before you come round from surgery which numbs the area for a number of hours afterwards.)
The kind of pain I have had is mostly soreness. For the first 5 or 6 days a lot of the area under my arm and at the side of my chest was actually quite numb (On day 4 when the nurse removed one of my drains I couldn't even feel her touching my skin). Over the last few days the sensation has been coming back, and with that some additional soreness, but it's nothing terrible.
I had occasions with very sharp and intense pain in my back as a result of my back drain (more on that below) but these were very short, sharp bursts of pain where I think the drain may have been hitting a nerve. Not nice but only lasted a few seconds.
The underneath of the top half of my arm is sore to the touch - I asked my surgeon about it. It's because a main nerve that goes into your arm gets knocked about a bit during surgery (unavoidable). This will heal after time. (My friend Heather who has had this surgery said it lasted about a month. It's nothing unbearable, just a bit sore to touch.)
And then I have had random instances of sharp or shooting kinds of pains, and some aches - but again, nothing unbearable.
Overall, considering the surgery I have had, the pain has been far less than I ever expected it to be. Don't worry about pain!
Oh! PS - this is not pain but a strange feeling. You can feel after about a week like you are carrying a book under your arm. It's a strange feeling and hard to describe but once you get it you'll know what I mean. That's normal - something to do with a rearranged tendon and it goes away in time.
Wounds/Scars
It's early days for me - I'm only day 12 post surgery, so I've only had one brief look at wounds before dressings have been put back on. But what I saw blew my mind! So neat!
Because I needed to lose my nipple, the surgeon cut around the areola and removed that section. So I will have a circular scar there. What he cut out has been replaced with skin from my back (attached underneath to blood vessels under my armpit, to keep it alive. Very clever stuff). It's looking pretty good! The skin from my back almost matches the skin from my front, so I expect a very neat scar, and can have a 3D nipple tattooed in the circle. It will never be quite the same as it was before, but honestly, it's pretty amazing. I've been taking any opportunity to whip it out and show my friends and they're all suitably impressed and amazed!
I also have a line scar in my armpit, around 5cm long I think - this was needed for the axillary node clearance. If I didn't have lymph nodes removed I'm not sure whether the surgeon would have needed to go in here and whether there would be a scar at all.
And on my back I have a line scar which almost (not quite) follows where the back of my bra goes across my back (where the surgeon went in to access the latissimus dorsi muscle on my back, and where skin was taken to replace the nipple/areola area of my breast). This scar is about 15cm long.
As I said, it all looks incredibly neat. I don't feel upset about the wounds/scars in any way.
I also had 3 drains in (I'll come on to drains next) - one in my armpit, one at the side of my left breast and one in my back (at the side of my back). The tubes for drains are small, but I guess they might leave small scars (maybe like a chicken pox scar).
Drains
One thing a lot of people worry about, myself included, is having drains in. It's really not that bad! The drains are bottles that are attached to tubes that go into your body. You're likely to have them in for between 5-7 days. They are held in place by stitches (so you'd really need to tug very hard at them for them to have any chance of coming out). It's not pretty but for the sake of information, here's a photo of two of mine, fluid and all! (Ew!)
Don't worry when you start to see lumps in them too! Gross! But completely normal!
The drains generally didn't cause me any pain or discomfort, apart from sometimes the one in my back would shift a bit and that would HURT! But, I discovered that getting up and moving around fixed it, I guess it would readjust position, and pain would disappear again.
They go everywhere with you (obviously) so you need a bag to carry them in. My hospital provided bags for them. Here's a picture of me (looking very much like a cancer patient which I hate!) with my drain bags - you can't see properly but I needed two bags for three drain bottles.
If you're getting your own bag for your drains I would recommend getting something fairly small but which has a long enough handle that you can put it over your shoulder and across your body ideally. I also found the long handle made it easier to pick up - I could hook it over the side of my bed meaning I didn't need to bend down so much to reach and pick it up - very difficult to do in the first few days. I had to press the button to call for a nurse numerous times just to pass me the handles of my drain bags when they'd dropped to the floor!
You know what? It's not that bad! In hospital I found the hospital bed to be really comfortable. It was all sorts of adjustable, and each day when the bed was remade I seemed to have a different assortment of pillows. But I think the standard number I used was 2-3. The main thing that annoyed me was not being able to sleep on my side for a few days. (Sleeping on my back was fine, it didn't hurt my back wound at all, it's just that I'm normally a side sleeper).
One day I managed to roll on to my right side, but couldn't roll back again. My orange "Help!" button was behind me and I couldn't reach it. The Ward reception desk was right by my room but I was too embarrassed to call out. So I lay there for about an hour til I managed to roll over on to my back, at which point a nurse came in about lunch, and I started to cry, haha! Other than that though, I had no bed/pillow related issues.
Before I went in to hospital I had prepared my bed at home with every kind of pillow and cushioning I could think of. I had a wall of normal pillows at the back, a V pillow in the middle, and cushions to the side. I had been imagining myself needing to be propped very carefully all around by the softest stuff possible. By the time I was back home (day 5) I was lying on my back with my usual one pillow, sometimes venturing on to my right (non-surgery) side with my usual one pillow under my head and a heart cushion under my surgery arm (more on the heart cushion below). It's now 12 days after surgery and I can almost lie on my non surgery side although I'm avoiding it as much as possible. (I just miss it! It's my preferred side to sleep on!)
The heart cushion!
My friend Heather who had LD Flap recon recently gave me this heart cushion. She got it from the hospital where she had her operation. It wedges under your arm (the side you had surgery). I didn't use it in hospital and started to wonder why Heather had needed it - but with hindsight I realise that's because at that point that whole area was still pretty numb. As the feeling started to return, the pain went up a level. The heart cushion is brilliant for wedging under your arm when it's sore - not sure why but it really helps. It's also great for wedging under your arm when you want to lie on your other side - again not sure why but for me it just made it so much more comfortable and took away some pain. (I did a quick check and if you google something like "breast surgery heart cushion" you'll come up with various places selling them.)
Clothes to wear
For a while after surgery you will have very restricted movement/use of your arm on the side where you had surgery. There are a couple of reasons for this. First of all, initially you just won't be able to move it much! It will be stiff, tight, sore. As that eases off, aside from careful exercises and movements, you shouldn't be using it very much - this is because you need to allow everything to heal and settle inside. That section of the inside of your body has been rearranged! It's held together internally all over the place by stitches. You need to be careful for a while, to allow the tissues to re-knit together in their new homes. So plan on spending several weeks wearing tops that button up or zip up. You won't be pulling any t-shirts over your head in the early days! Button up PJs/nightshirts, button up shirts/cardigans, zip up hoodies. And possibly vest tops that you can step in to and pull up, rather than put over your head.
You don't need to get anything particularly oversize, as long as clothes aren't skin tight there will be enough room in them for dressings and drains - they really don't add much bulk at all. (I bought several things a size large and didn't need to.)
Hospitals tend to be pretty warm, so try and take pjs/nightshirts that are fairly thin and maybe some short sleeve options, rather than anything of a cosy, fleecy variety. (Especially if, like me, you are still getting chemo-induced hot flushes. I spent half my time in hospital hugging my chillow pillow!)
And don't worry about your clothes getting covered in blood and bodily fluids. I was convinced that with that amount of surgery my clothes would inevitably end up with gross stuff on them, that I'd be leaking and oozing all over the place. Not at all. (Literally, not at all.)
Oh and the big question.... what knickers do you wear for surgery? It probably doesn't matter! Due to the length of surgery they're likely to put a catheter in so you'll either be given paper hospital pants to wear, or whatever you are wearing will be taken off and given back to you after surgery in a little plastic bag! If in doubt, go with plain cotton ones!
Bra
I was told to get a non-wired, front fastening sports bra. The only non-wired front fastening sports bras I could find were proper sporty sports bras, high impact, restrictive (not quite gentle enough for immediately after an op). So on advice from the woman in M&S I got a 2 pack non-wired, medium impact sports bra which fastened at the back (with 3 widths) like a normal bra. These have done me just fine. (Image below is of what I bought, not just a random bra model!)
The first couple of days I didn't need to wear it, then the next few days in hospital I had the nurse help with doing it up/undoing it when they needed to do wound checks or I needed to wash. And then when you're home and have drains in you can either get someone to help you with it, or if there's no one to help, just pull it down to wash then pull it back up again - you'll be back in the hospital 2 or 3 days later for wound checks and dressing changes so can get help from a nurse again then. And once your drains are out it's easy to do it up at the front and then twizzle it round.
You have to wear it all the time (ALL the time) for weeks and weeks. To help support all that rearranged tissue while it knits back together in its new home. But the ones I bought have been comfy (I think cos they're non-wired).
Don't be fooled by things labelled "post-surgery bras". They aren't for supporting you immediately after surgery. They're the ones that have pockets for prostheses if you've had a mastectomy and no reconstruction.
Washing
You need to keep the wounds and dressings completely dry after surgery, so you can't shower. I'm currently day 12 after my operation and I think the dressings are coming off for good on day 19. I think it's then that I can have a shower. So be prepared to stand in front of a sink and wash with a flannel for 2-3 weeks. I also took baby wipes in to the hospital, although didn't really use them much as I was mobile and well enough to wash in front of the sink in the bathroom. I didn't bother washing my hair when I was in hospital (just kept the headscarf on) but I have been fine washing it in the sink myself since I got home.
Things to take in to hospital
I can't guarantee that I haven't forgotten anything! But here are some of the things I found it useful to have in hospital.
The obvious:
- Toothbrush and toothpaste
- Flannel
- Shower gel/body wash
- Facewash
- If you use it, moisturiser
- Handcream
- Hairbrush (if you've not lost all your hair to chemo)
- Knickers
- If you wear them, glasses and case
- Any medications you take
- Phone and charger
The obvious but with notes:
- Pyjamas or nightshirts. Make sure they are button up so can be put on and easily unbuttoned by nurses who will be doing regular wound checks. Also I'd recommend fairly thin/light material. Hospitals are warm!
- Something else to wear if you want an alternative to sleepwear, eg button up shirt/t-shirt and a pair of joggers - make sure it's nothing you need to pull over your head.
- Shampoo (suggest taking dry shampoo instead for the time in hospital)
- Socks or bed socks (although you might not need them - not only are hospitals warm but you'll have those attractive knee high, white, preventing-DVT socks on too)
- Slippers (ones you can easily get on your feet without needing to bend down in any way)
- A book or two to read if you like to read (but no need to take in five like I did - I was sure I'd be bored and going stir crazy in a hospital bed for that many days but most of my time was taken up with sleeping, eating, visitors, observations/wound checks, and washing)
- Small purse with a small amount of cash (I left my main purse and bank cards at home)
The less obvious:
- Lip balm (you'll have dry lips after general anaesthetic)
- Small pack of boiled sweets (you'll have a dry mouth and possibly a bit of a sore throat after general anaesthetic. They really help.)
- Earphones or headphones (if you plan on listening to your own music or watching TV in the hospital)
- Earplugs (I didn't need these this time as I had my own room - but if you are going to be in a bay on a Ward apparently they are a must)
- Eyemask (again, I didn't need it this time as I had my own room so could control the lighting in the room myself, but if you're in a bay on a Ward this will help you sleep)
- A light bag with long straps for your drains (eg canvas shopping bag. But it might be worth checking first with your hospital if they will give you any specially made drain bags)
- A compact mirror (handy for if you don't want to get out of bed to go to the bathroom mirror)
- Chillow pillow (are you getting hot flushes because of chemo? If so and you haven't got one, I recommend! Shop around online. And if you have got one, definitely take it in with you.)
Care in the few weeks after surgery
I live alone so I arranged to have my friends take it in turns to come and stay and help me out. You need help for two main reasons:
- In the early days there's a lot you can't do. You're likely to go home with a drain or two attached to you which restricts mobility. And you basically need to rest as much as possible and not use the surgery side arm for anything much at all. No lifting a kettle with it! No opening heavy doors with it! No bending, reaching, or stretching in to awkward positions with it to get things/plug stuff in etc
- As you become more mobile and have less pain, you still shouldn't do much with that arm. Your external wounds heal more quickly than your internal wounds. You've had bits of you rearranged internally! Muscle has been moved from the back to the front of your body, it's been stitched up a lot inside, delicate work has been done to attach blood vessels. You need to rest and be gentle to allow all that to heal and for the tissues to knit together in their new homes. Do too much and you risk damaging the very careful work the surgeon has done inside.
- Days 1-5: I was in hospital.
- Days 6-14: I have had a rota of friends staying with me, doing pretty much everything for me. They're cooking and washing up, sorting out my washing, doing my shopping, hoovering, making me cups of tea, occasionally taking me to the hospital for check ups and so on! I've gushed about my friends lots in this blog already because they are amazing, I already knew that, but there's some of them that I now owe big time! I feel guilty, sitting on my sofa, while someone else does all this for me. But I need to be careful and let the surgery heal. And so far, so good.
- Days 15-22: I've got friends stopping by around lunchtime and teatime, to do cooking and washing up, and odd jobs like clothes washing. I'll be ok in between times to sort breakfast, make cups of tea etc.
- After that - I'll see how I am. I expect to be fine with cooking and washing up and clothes washing, I will need to ask for occasional help over the next few weeks with heavier housework (or just not do it).
Beyond Week 2!
An update from me 4 weeks after surgery....
I'm still off work and at home but I can do a lot more for myself now, as long as I'm careful. I'm still avoiding lifting anything heavy - I notice it feels wrong if I try (for example I tried to lift a carrier bag with 12 small tins of dog food in it yesterday - I just put it straight down again as I could feel the strain!). I can cook and wash up as long as I avoid any big or heavy pans.
The dressings all came off after three weeks so I can bath and shower - it feels great! I'm using Sanex Zero as it has no perfume or anything like that. And I'm now covering myself in e45 cream as often as I can where the surgery was - ready for radiotherapy.
I did stop taking painkillers after the first couple of weeks but my surgeon has told me to keep taking them for a while as I'm still sore especially with certain kinds of movement (eg leaning/bending down, walking out and about). And I'm VERY tired! I am sleeping A LOT. I was a bit worried about this ("do I have post cancer fatigue? eurgh that's the last thing I want!") til my surgeon lectured me about how young people are always too impatient with recovery from surgery. He reminded me it's major surgery - my body is used to being fit and healthy, not dealing with such a large amount of healing - the external wounds are the tip of the iceberg, there's a lot of healing taking place inside right now. Plus I had chemo before. He said give myself a break, take the painkillers and rest for some more weeks. He said it won't feel completely "normal" for 4-5 months.
The wounds are now scars and they look great - they've healed really well and are very neat. I'm happy!
I'm still in button up clothes, and I'm still taking up offers of help with shopping, cooking and cleaning from my friends, and I'm resting as much as I can.... but I feel like I'm getting a bit better every day. I hope it continues and I'm back to normal life soon!
Questions?
If you have any questions please leave a comment below and I will respond as soon as I can
Thursday, 27 November 2014
Everything I've learned about.....Faking it - eyebrows and eyelashes
Hi! I'm writing this post for anyone who is going to be going through chemo and faces losing their eyelashes and eyebrows. Don't worry - you can fake them with makeup! And it's pretty easy, trust me. I'm speaking as someone who knew sod all about makeup before I had chemo. Liquid eyeliner? I'd never used it. Lipstick? I'd never worn it. Primer? Isn't that some kind of paint you put on cars?
This isn't a tutorial, this is basically just me sharing some photos to demonstrate how a bit of makeup can quickly transform your generic cancer face back in to a face that resembles what you looked like before chemo came along.
At the end though I'm going to share a couple of links that will help if you, like me, don't know where to begin in completely faking eyebrows and eyelashes.
So first of all this is my Cancer Face. (I do actually have some hair still but I've cropped it out to give a more authentic Cancer Face.)
Sometimes on chemo, I feel tired and ill. But a lot of the time I don't. And when I'm feeling well and I want to go out, I'd rather not look liked a tired, ill cancer patient. And this is where makeup comes in!
Eyebrows
First of all, eyebrows. I have tried two ways of faking eyebrows. One is with Benefit Browzings (or equivalent in another brand). This works, and is easy, but for me I couldn't get my eyebrows quite right. Always ended up too thick and dark. Here's a photo of one from a while ago as an example.
It was better than nothing but I was never really happy.
Then a couple of days ago I went to a Look Good Feel Better makeup workshop (details on that at the end of this post) and was shown how to do eyebrows with a pencil. I much prefer it! The pencil I was given is Estee Lauder Double Wear Stay In Place Brow Lift Duo and it looks like this:
One end is a brown pencil which you use to draw on eyebrows, and the other end is a very light coloured pencil highlighter which you just use a little below the eyebrow you've drawn on. I don't know why. But that's what they told me to do so that's what I'm doing!
Here's me with one eyebrow done so you can compare sides:
And here's me with both eyebrows done!
Another step away from Cancer Face. Hurray! But as you can see, I'm still looking tired and ill, just with eyebrows now. It's cos I've got no eyelashes.
Eyelashes
So, you could go and buy lots of false eyelashes and stick them on. I've never used false eyelashes in my life, and probably never will. I just can't be bothered, and I am the kind of person who would inevitably go out, lose the fake eyelashes off one eye and be unable to remove the fake eyelashes off the other eye, and look like a complete idiot. So I'd rather not bother. Instead, I'm just using eyeshadow and an eyeliner. It's amazing the difference it makes!
First of all, eyeshadow. Here's a photo of me with eyeshadow on and no eyeliner yet. To be honest - in the photo you probably can't tell that much difference, but in real life it's another small step away from Cancer Face.
Next up - eyeliner. Now, I have recently learned how to use a liquid eyeliner... BUT, having been on the Look Good Feel Better workshop I've decided at the moment, I prefer using a pencil - and I'm using a dark grey instead of black. The one I got from Look Good Feel Better is a Lancôme, Le Crayon Khol, 03 Gris Bleu!
(By the way, the photo from earlier of the eyebrow done using Browzings shows one of my early attempts at using liquid eyeliner. I got better at it than that, but even so I think it's a bit full on for me. I might prefer it when I have some eyelashes again.)
Here's me with one eye done with a pencil so you can compare with and without:
And here's me with eyeliner on both eyes. Just putting a bit of eyeliner on gives the impression of eyelashes being there.
Here's a close up of one eye and eyebrow.
This isn't a tutorial, this is basically just me sharing some photos to demonstrate how a bit of makeup can quickly transform your generic cancer face back in to a face that resembles what you looked like before chemo came along.
At the end though I'm going to share a couple of links that will help if you, like me, don't know where to begin in completely faking eyebrows and eyelashes.
So first of all this is my Cancer Face. (I do actually have some hair still but I've cropped it out to give a more authentic Cancer Face.)
:-(
As you can see I do have a few eyebrow hairs still but not many. I still have one chemo left at the point of taking this photo so they might disappear too. And I only have the occasional very stubby eyelash. Mascara is no longer an option for me as there's nothing to apply it to!
Here's a close up of an eyebrow and eye.
:-(
I miss my eyelashes!
Anyway. This is what I look like in my wig with no eyelashes and almost no eyebrows.
Slightly less "cancer patient" but at best looking decidedly tired/a bit ill.
Sometimes on chemo, I feel tired and ill. But a lot of the time I don't. And when I'm feeling well and I want to go out, I'd rather not look liked a tired, ill cancer patient. And this is where makeup comes in!
Eyebrows
First of all, eyebrows. I have tried two ways of faking eyebrows. One is with Benefit Browzings (or equivalent in another brand). This works, and is easy, but for me I couldn't get my eyebrows quite right. Always ended up too thick and dark. Here's a photo of one from a while ago as an example.
It was better than nothing but I was never really happy.
Then a couple of days ago I went to a Look Good Feel Better makeup workshop (details on that at the end of this post) and was shown how to do eyebrows with a pencil. I much prefer it! The pencil I was given is Estee Lauder Double Wear Stay In Place Brow Lift Duo and it looks like this:
One end is a brown pencil which you use to draw on eyebrows, and the other end is a very light coloured pencil highlighter which you just use a little below the eyebrow you've drawn on. I don't know why. But that's what they told me to do so that's what I'm doing!
Here's me with one eyebrow done so you can compare sides:
And here's me with both eyebrows done!
Another step away from Cancer Face. Hurray! But as you can see, I'm still looking tired and ill, just with eyebrows now. It's cos I've got no eyelashes.
Eyelashes
So, you could go and buy lots of false eyelashes and stick them on. I've never used false eyelashes in my life, and probably never will. I just can't be bothered, and I am the kind of person who would inevitably go out, lose the fake eyelashes off one eye and be unable to remove the fake eyelashes off the other eye, and look like a complete idiot. So I'd rather not bother. Instead, I'm just using eyeshadow and an eyeliner. It's amazing the difference it makes!
First of all, eyeshadow. Here's a photo of me with eyeshadow on and no eyeliner yet. To be honest - in the photo you probably can't tell that much difference, but in real life it's another small step away from Cancer Face.
Next up - eyeliner. Now, I have recently learned how to use a liquid eyeliner... BUT, having been on the Look Good Feel Better workshop I've decided at the moment, I prefer using a pencil - and I'm using a dark grey instead of black. The one I got from Look Good Feel Better is a Lancôme, Le Crayon Khol, 03 Gris Bleu!
(By the way, the photo from earlier of the eyebrow done using Browzings shows one of my early attempts at using liquid eyeliner. I got better at it than that, but even so I think it's a bit full on for me. I might prefer it when I have some eyelashes again.)
Here's me with one eye done with a pencil so you can compare with and without:
And here's me with eyeliner on both eyes. Just putting a bit of eyeliner on gives the impression of eyelashes being there.
What do you think?! Not quite screaming "CANCER PATIENT" so much now is it?!
It's not quite the same as having real eyebrows and eyelashes, but I am well impressed at how much difference a little bit of makeup can make. This is the makeup I used on my eyebrows and eyes: An eyebrow pencil, an eyeliner, and eyeshadow.
That is literally it.
Stuff you might be interested in!
So if you are going through chemo and are going to lose your lashes and brows and want to fake them but don't know where to start here is something to check out:
Look Good Feel Better workshops
Hopefully your hospital has told you about these already, but if not have a look on their website: http://www.lookgoodfeelbetter.co.uk/
They are free 2 hour makeup sessions for women going through chemotherapy. The one I went to was held at the hospital I go to for chemo.
You are given a big bag of makeup and cosmetics products which you get to keep. Mine included: eye makeup remover, makeup remover, toner, moisturiser, special eye moisturiser, primer, concealer, foundation, blusher, powder, eyebrow pencil, eyeliner pencil, eyeshadow, mascara, lip liner pencil, 2 lipsticks.
And you are shown how to use all of these products in a way that leaves you looking like a regular non-cancer-patient person (unlike a clown, which is what I'd have looked like if I'd just been given the products and sent away to work them out on my own!).
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