So, first chemo and port fitting tomorrow. Slightly (okay, very) fearful.
Hoping that I get seen quickly so I can get back home as my poor husband has an extremely bad back - hopefully he hasn't ruptured a disc but we won't know until Wednesday....
I don't know what to say really. In some way it feels like tomorrow will be the end of "normality" as I have come to know it (well, the most recent version of normality), and in other ways it is the beginning of a whole new phase.
Perhaps the best way to think of it is the beginning of the end of cancer being in me?
I have had some amazing messages of love and support, which I am extremely grateful for. I know I have lots and lots of people rooting for me, and it helps. A lot.
I'm being picked up at 7.15 in the morning, and have no idea what time I shall be released. It'll depend on what time they can have a bed for me for the port fitting, then I'll wait for chemo and so it goes on.
My ipod and ipad have been charged and loaded with music etc so I should be fully entertained. The chance for a nap would also be nice ;-)
I shall report back in due course.
Wish me luck. I'm going in.....
Sunday, 18 November 2012
Friday, 16 November 2012
Wigs....
I had a wig fitting today. It was......interesting?
The youngest came with me, which was fun - he was rather entertained by me trying on different hair and was constantly asking "what's that mummy?" each time I tried a different wig on! Based on how I thought I looked in a wig, I thing that what he was really trying to say was "Mother, what in all the blazes do you think you have on your head? You look ridiculous, remove it at once."
Darling boy, I quite agree.
To summarise, the wigs I tried on today felt:
I did ask about the price of a wig made with real hair, but they are £400 or thereabouts, and that's only for one with shoulder length hair.... vain I may be, a millionairess I am not.
Does this mean I'm going to try the cold cap? Probably not, but it does mean that I shall have to consider being boldly bald and bearing all for a few months. I know I can wear hats and scarves, and I might even give them a try, but I have an overwhelming urge to just be me, whatever I look like, all the way through the treatment.
Unless I get really fat of course, at which point I shall hibernate and see you all next summer! [joking]
Anyway, I shall try a few more on - there's someone up the road who has an amazing reputation for wig fitting, and doesn't have a cosy NHS contract so may well have more choice....(therein lies another story)..... so there is hope.
Surprisingly, being bald doesn't scare me any more. It was one of the main things that occurred to me and concerned me when I knew I would definitely have to have chemo, but I have either become braver or more practical about the whole thing. After all, it will eventually grow back right?
Survival. That's the thing that is at the top of the list now. Beating it, making sure it never comes back. That's the only thing I am determined to focus on during my treatment.
I am sure I will falter and doubt myself and my ability to get through everything, but my intention is to try and remember my bravado now every time I throw up, feel fatigue, and even when my nails drop off (as my oncologist is so sure they will) and try and remember that all the side effects in the world will be worth it.
The youngest came with me, which was fun - he was rather entertained by me trying on different hair and was constantly asking "what's that mummy?" each time I tried a different wig on! Based on how I thought I looked in a wig, I thing that what he was really trying to say was "Mother, what in all the blazes do you think you have on your head? You look ridiculous, remove it at once."
Darling boy, I quite agree.
To summarise, the wigs I tried on today felt:
- Heavy
- Hot
- Itchy
- Tight
- Unnatural
- Weird
I did ask about the price of a wig made with real hair, but they are £400 or thereabouts, and that's only for one with shoulder length hair.... vain I may be, a millionairess I am not.
Does this mean I'm going to try the cold cap? Probably not, but it does mean that I shall have to consider being boldly bald and bearing all for a few months. I know I can wear hats and scarves, and I might even give them a try, but I have an overwhelming urge to just be me, whatever I look like, all the way through the treatment.
Unless I get really fat of course, at which point I shall hibernate and see you all next summer! [joking]
Anyway, I shall try a few more on - there's someone up the road who has an amazing reputation for wig fitting, and doesn't have a cosy NHS contract so may well have more choice....(therein lies another story)..... so there is hope.
Surprisingly, being bald doesn't scare me any more. It was one of the main things that occurred to me and concerned me when I knew I would definitely have to have chemo, but I have either become braver or more practical about the whole thing. After all, it will eventually grow back right?
Survival. That's the thing that is at the top of the list now. Beating it, making sure it never comes back. That's the only thing I am determined to focus on during my treatment.
I am sure I will falter and doubt myself and my ability to get through everything, but my intention is to try and remember my bravado now every time I throw up, feel fatigue, and even when my nails drop off (as my oncologist is so sure they will) and try and remember that all the side effects in the world will be worth it.
Tuesday, 13 November 2012
The bedtime from hell
Also known as: "I think my son may be angry with me"....
The smallest has been doing really well with not being breast fed any more. After my bone scan, I could have fed him again as long as I expressed and dumped first, but I chose to wait and see what he did i.e. don't offer and don't refuse, to see whether he might take the opportunity to wean himself....
The bone scan was on the Monday night, and he didn't ask again until the Tuesday night/Weds morning? Awful though it sounds, bearing in mind how upset I was about having to stop, I don't entirely remember. Let's call it Wednesday - most likely early hours. So, I fed him, enjoyed the cuddles and left it at that to wait and see what he did. Thursday and Friday he fed a couple of times, then got a horrid chest infection and vomited due to gagging on phlegm for several days, so didn't really want anything except water and still then didn't actually ask for a feed.
The week after, he was physically a lot better, and didn't ask for a feed until the following Wednesday and I just told him that I was really sorry, but there was no more milk left, which seemed to work.
The next weekend involved a vomiting bug (poor little boy) and he couldn't even keep water down for nearly 2 days, and milk was the worst thing for him to have so asking for a feed wasn't an issue.
I thought we were in the clear, until this weekend just gone. The smallest ended up in our bed in the early hours of Saturday morning, and I ended up feeding him in my sleep...whoops....
He asked once on Sunday, and I trotted out the party line again, and he was fine with it, or so I thought, although I did get bitten on the back of the leg, which I think was a slight fit of pique/temper, but gave him the benefit of the doubt.
Tonight was a DISASTER.
Bathtime went as well as it normally does, with some highs and lows but no one drowned. We went to have stories in the smallest's bedroom and he started to cry, so I gave him a cuddle which sort of help, and he ended up trying to cling to me like a limpet , so my husband took the biggest to bed, and came back to see how I was getting on.
Basically, it didn't go well at all. I hoped that he would have a cuddle and go to sleep, which isn't unheard of. I tried everything including standing up and jiggling, jogging, swaying etc - all of which used to work when he was little.
It was so so horrible - he just seemed so angry at me, climing all over me, and he just seemed so frustrated.
Eventually I had to give up and let my husband take over. He tried to settle the smallest for a couple of minutes upstairs then brought him downstairs for some milk and the chance to reboot the system, which seemed to work. A quick cuddle from mummy on the sofa, some milk, and a cuddle in bed with daddy and fortunately, he's now passed out in bed, nearly an hour after we started the process.
Horrific. I really hope never to have to go through that again.
I'm sure my son will forgive me one day, I just hope it is one day soon....
The smallest has been doing really well with not being breast fed any more. After my bone scan, I could have fed him again as long as I expressed and dumped first, but I chose to wait and see what he did i.e. don't offer and don't refuse, to see whether he might take the opportunity to wean himself....
The bone scan was on the Monday night, and he didn't ask again until the Tuesday night/Weds morning? Awful though it sounds, bearing in mind how upset I was about having to stop, I don't entirely remember. Let's call it Wednesday - most likely early hours. So, I fed him, enjoyed the cuddles and left it at that to wait and see what he did. Thursday and Friday he fed a couple of times, then got a horrid chest infection and vomited due to gagging on phlegm for several days, so didn't really want anything except water and still then didn't actually ask for a feed.
The week after, he was physically a lot better, and didn't ask for a feed until the following Wednesday and I just told him that I was really sorry, but there was no more milk left, which seemed to work.
The next weekend involved a vomiting bug (poor little boy) and he couldn't even keep water down for nearly 2 days, and milk was the worst thing for him to have so asking for a feed wasn't an issue.
I thought we were in the clear, until this weekend just gone. The smallest ended up in our bed in the early hours of Saturday morning, and I ended up feeding him in my sleep...whoops....
He asked once on Sunday, and I trotted out the party line again, and he was fine with it, or so I thought, although I did get bitten on the back of the leg, which I think was a slight fit of pique/temper, but gave him the benefit of the doubt.
Tonight was a DISASTER.
Bathtime went as well as it normally does, with some highs and lows but no one drowned. We went to have stories in the smallest's bedroom and he started to cry, so I gave him a cuddle which sort of help, and he ended up trying to cling to me like a limpet , so my husband took the biggest to bed, and came back to see how I was getting on.
Basically, it didn't go well at all. I hoped that he would have a cuddle and go to sleep, which isn't unheard of. I tried everything including standing up and jiggling, jogging, swaying etc - all of which used to work when he was little.
It was so so horrible - he just seemed so angry at me, climing all over me, and he just seemed so frustrated.
Eventually I had to give up and let my husband take over. He tried to settle the smallest for a couple of minutes upstairs then brought him downstairs for some milk and the chance to reboot the system, which seemed to work. A quick cuddle from mummy on the sofa, some milk, and a cuddle in bed with daddy and fortunately, he's now passed out in bed, nearly an hour after we started the process.
Horrific. I really hope never to have to go through that again.
I'm sure my son will forgive me one day, I just hope it is one day soon....
Thursday, 8 November 2012
Feeling self-conscious
I seem to have the verbal runs tonight.
I'm auctioneering tomorrow, so popped into work today for a few hours and felt extremely self-conscious with my new and still slightly pink hair do. Silly really, it's only hair!
I've had lots of compliments about it, as apparently it makes me look much younger which helps considerably as I've been struggling with trying to style it.
Of course, it's really the beginning of a period of self-consciousness isn't it? I start chemo in 10 days, so in about 25-30 my hair could all be gone, at which point my stupid complaints about having short hair will be just that.
I have a wig fitting booked for the 16th, which could be entertaining as I'm taking the children and my husband too! It's being held in The Big C centre at our hospital, which has a lovely general seating area that is available for cancer patients and their carers/families to use.
I really want the children to see the centre as if I tell them that this is where I'm disappearing to every 3 weeks they will hopefully have visions of the lovely round building with big comfy arm chairs and lots of tea and biscuits.... not that we've even really told the children I'll be having any treatment yet. I don't want the eldest to worry about it too much in advance.
So, in a few weeks time I'll be needing you to tell me to get a grip and sort myself out. Or perhaps I should be getting a grip now?
Who knows?
It's a lot to get used to, and despite the fact that I've been living with a diagnosis since August, the fact that I actually am GOING TO HAVE CHEMO has been so far at the back of my mind it's been in a different time zone.
It had never occurred to me before that I might be this vain. After Chemo I'll be starting the RT, Herceptin and Tamoxifen. There are so many people out there who have weight gain issues with the Tamoxifen (and some with water retention with the FEC Chemo) it has slightly freaked me out too. On top of being bald, I don't want to be fat too....
Good grief, what a pity fest. Better to be alive right?
I'm auctioneering tomorrow, so popped into work today for a few hours and felt extremely self-conscious with my new and still slightly pink hair do. Silly really, it's only hair!
I've had lots of compliments about it, as apparently it makes me look much younger which helps considerably as I've been struggling with trying to style it.
Of course, it's really the beginning of a period of self-consciousness isn't it? I start chemo in 10 days, so in about 25-30 my hair could all be gone, at which point my stupid complaints about having short hair will be just that.
I have a wig fitting booked for the 16th, which could be entertaining as I'm taking the children and my husband too! It's being held in The Big C centre at our hospital, which has a lovely general seating area that is available for cancer patients and their carers/families to use.
I really want the children to see the centre as if I tell them that this is where I'm disappearing to every 3 weeks they will hopefully have visions of the lovely round building with big comfy arm chairs and lots of tea and biscuits.... not that we've even really told the children I'll be having any treatment yet. I don't want the eldest to worry about it too much in advance.
So, in a few weeks time I'll be needing you to tell me to get a grip and sort myself out. Or perhaps I should be getting a grip now?
Who knows?
It's a lot to get used to, and despite the fact that I've been living with a diagnosis since August, the fact that I actually am GOING TO HAVE CHEMO has been so far at the back of my mind it's been in a different time zone.
It had never occurred to me before that I might be this vain. After Chemo I'll be starting the RT, Herceptin and Tamoxifen. There are so many people out there who have weight gain issues with the Tamoxifen (and some with water retention with the FEC Chemo) it has slightly freaked me out too. On top of being bald, I don't want to be fat too....
Good grief, what a pity fest. Better to be alive right?
Out of the mouths of babes....
As you know, I've been lamenting the fact that there are never going to be any more children in my life, other than the wonderful two I have.
I'm incredibly lucky to have them. Spoilt even, but still, it's an open wound that hasn't healed yet.
So, bedtime tonight, and we're choosing stories. We have one of the Usbourne "new experiences books", and have been working our way through them for some time. One of the stories is entitled "The New Baby".
You can probably see where this is heading.....
Isobel, my eldest, pipes up saying that she would like me to have a new baby.
Ouch. Bugger. Bollocks.
I try explaining that I already have two wonderful children and that I love them so much I don't think it would be fair to have another baby, but apparently this isn't good enough for madam tonight.
I'm sure she'll get over it, but it hurts in the meantime.
Time for a sob?
I'm incredibly lucky to have them. Spoilt even, but still, it's an open wound that hasn't healed yet.
So, bedtime tonight, and we're choosing stories. We have one of the Usbourne "new experiences books", and have been working our way through them for some time. One of the stories is entitled "The New Baby".
You can probably see where this is heading.....
Isobel, my eldest, pipes up saying that she would like me to have a new baby.
Ouch. Bugger. Bollocks.
I try explaining that I already have two wonderful children and that I love them so much I don't think it would be fair to have another baby, but apparently this isn't good enough for madam tonight.
I'm sure she'll get over it, but it hurts in the meantime.
Time for a sob?
Wednesday, 7 November 2012
In other news
Other than going pink, it has been a busy week with my Bone Scan on Monday night, filming for the Red Tractor on the farm with Jimmy Doherty (he is really lovely), and I even popped into work on Thursday. I wasn't particularly effective, but I was there.
I also have my Port fitting date and first Chemo date - both on 19th November. It's going to be a long day - I have to be there before 8am and will have to wait for a bed to do the port fitting, and once that is done, I'll be in the queue for Chemo. Apparently, if I don't get Chemo until early/late evening they will keep me in, which I'm not looking forward to, other than potentially a full nights sleep (gah, children!) and drugs on tap to counter side effects if I need them.
Actually, from that list there are lots of potential positives for staying in, but we'll see what happens on the day. I'll have to make sure I pack lots of reading materials so I don't get too bored, but hopefully I'll be allowed to wander round trather than have to be stuck in one room/ward all day.
Some brilliant news though - my bone and CT scans have come back clear, which is an enormous relief.
I can, hopefully and tentatively say that we may have caught the cancer early. Fingers crossed.
I have one got one more test before I start, which is a Cardiogram, and rather essential before considering starting Herceptin, but I'm not as worried about this one - to my knowledge my heart has always been nice and strong!
Oh yes, and a wig fitting - this should be entertaining! I'm half thinking about taking my daughter along to watch - I think she might find it hilarious.....
I also have my Port fitting date and first Chemo date - both on 19th November. It's going to be a long day - I have to be there before 8am and will have to wait for a bed to do the port fitting, and once that is done, I'll be in the queue for Chemo. Apparently, if I don't get Chemo until early/late evening they will keep me in, which I'm not looking forward to, other than potentially a full nights sleep (gah, children!) and drugs on tap to counter side effects if I need them.
Actually, from that list there are lots of potential positives for staying in, but we'll see what happens on the day. I'll have to make sure I pack lots of reading materials so I don't get too bored, but hopefully I'll be allowed to wander round trather than have to be stuck in one room/ward all day.
Some brilliant news though - my bone and CT scans have come back clear, which is an enormous relief.
I can, hopefully and tentatively say that we may have caught the cancer early. Fingers crossed.
I have one got one more test before I start, which is a Cardiogram, and rather essential before considering starting Herceptin, but I'm not as worried about this one - to my knowledge my heart has always been nice and strong!
Oh yes, and a wig fitting - this should be entertaining! I'm half thinking about taking my daughter along to watch - I think she might find it hilarious.....
Friday, 2 November 2012
Return of the Pink Ladies!
Well, we did it! on Tuesday we went well and truly pink, and my locks have been (sadly) binned, as my hair was too short to donate to the Little Princess Trust.
The Gallery hairdressers in Norwich did the deed, and we absolutely amazing and didn't charge us a penny, despite the fact that we were there for over 4 hours and rather monopolised 3-4 of their team members!
All in all it went very well, but short hair is going to take a while to get used to...... then it'll all fall out....
Here is a picture of my new "do"
And a link or two to some facebook albumns:
Pink Ladies
Pink Ladies 2
Fund raising wise, it has been incredible - including gift aid, as at 2nd November we are over £3,300.
Virgin Money Giving
There have been some articles in the local newspapers about our fund raising efforts, which are great, but I didn't realise that the "journalist" who interviewed me would be quite so explicit with her descriptions of what I've had done.... it is very, honest, shall we say?
Hey ho. Perhaps I'll keep my head down for a few days.
The whole point though is to raise awareness. I'm not ashamed of having had a mastectomy, and am not frightened to tell people I have cancer/am being treated for cancer. Whilst this is a part of my life I wish I wasn't going through it is what it is and I can't change it.
My hope is that if my life and my experiences are out there for people to read about, perhaps others might not be afraid to ask questions and will actually check themselves, and take the risk of cancer more seriously than I ever did.
The Gallery hairdressers in Norwich did the deed, and we absolutely amazing and didn't charge us a penny, despite the fact that we were there for over 4 hours and rather monopolised 3-4 of their team members!
All in all it went very well, but short hair is going to take a while to get used to...... then it'll all fall out....
Here is a picture of my new "do"
And a link or two to some facebook albumns:
Pink Ladies
Pink Ladies 2
Fund raising wise, it has been incredible - including gift aid, as at 2nd November we are over £3,300.
Virgin Money Giving
There have been some articles in the local newspapers about our fund raising efforts, which are great, but I didn't realise that the "journalist" who interviewed me would be quite so explicit with her descriptions of what I've had done.... it is very, honest, shall we say?
Hey ho. Perhaps I'll keep my head down for a few days.
The whole point though is to raise awareness. I'm not ashamed of having had a mastectomy, and am not frightened to tell people I have cancer/am being treated for cancer. Whilst this is a part of my life I wish I wasn't going through it is what it is and I can't change it.
My hope is that if my life and my experiences are out there for people to read about, perhaps others might not be afraid to ask questions and will actually check themselves, and take the risk of cancer more seriously than I ever did.
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