Thursday, 22 November 2012

What becomes of the broken hearted?

Okay, so possibly a slightly melodramatic post title.

However, I have had more bad news from my Oncologist.

Apparently, my left ventricle doesn't work as well as it should for someone of my age... 50% plays 65%. This is an issue, as they now don't want to give me any more FEC, and want to switch straight to Taxotere. At this stage, they also aren't sure whether they are going to be able to give me Herceptin. If they do, it certainly won't be at the same time as the Taxotere, which isn't an issue except for delaying completion of treatment, which I can live with. Ha ha.

Permission to swear? Loudly?

At the moment, other than starting ACE inhibitors immediately, which was yesterday, I really don't know where I stand and what the hell is going on.

It doesn't sound like they looked at my heart scan before giving me my first FEC, which is rather irritating, as they might well not have given it to me if they had - apparently it isn't good for someone with a "heart condition" which, apparently, I have.

So. Heart medication has started and I'm having a chat through with the consultant on Monday and will be having another heart scan to ascertain whether any damage has been done. I will admit to being rather fricked off and if the heart function has decreased I will want some pretty clever answers otherwise the poo may hit the proverbial.

On the plus side, the telling off I gave the GP's receptionist on Tuesday has definitely sunk in as they were extremely polite and efficient yesterday when organising my new medication.....

1 down, 5 to go....

Port fitting done, and first chemo done. Phew.

Monday and, let's face it Tuesday, and most of Wednesday are days I would like to be able to forget in a big hurry.

Monday started badly, as despite having had my first chemo delayed to incorporate a port fitting so we could use the port the same day, the rather lovely (and I do actually mean lovely) sister on the ward who was meant to admit me, was horrified that I was going to go through everything on the same day and was adamant that I shouldn't go through with everything - I think she even went to "have words with" my oncologist. 

Alarm bells should have rung at this point, but in my normal stubborn way, I insisted on doing the whole lot, as I absolutely had to get home before the children arrived back from nursery so I could help my husband. (Remember this point later on....)

Having had chemo delayed I was adamant that I ought to do everything as planned, despite the advice from the sister in charge of the ward. They had no space for me anyway, so after a quick antiseptic shower (which apparently I should have had at home but no one gave me the stuff) I was dispatched to the day patient unit for a bed so I could have my port fitting at 10 ish, and my chemo was then booked for 2pm. On the basis that this was an improvement from the timescales I had been given (i.e. wait for a space all day for both procedures) I was quite happy and toddled off to the DPU.

The DPU is lovely, but the poor nurses had no idea what to do with me as they never have patients in there for port fittings, so they didn't know if I could have a cup of tea or whether I should be nil by mouth.....we didn't have long to wait though as I was soon called up to Interventional Radiology for the port fitting.

Rather embarrassingly, I wasn't allowed to walk up and I had to have a ride on the bed - the porter was adamant, as were the nurses.... although the porter did rather admit that I looked healthy enough to walk, and was definitely too well to be having chemo later.......appearances can be deceiving.....

So, the port fitting. 

Went fine, but was quite unpleasant and not an experience I would like to have again. I do admit though, that it has got to come out at some point and teleportation isn't an option..... 

Once we got enough local anaesthetic in it was more comfortable and only took about 45mins. The consultant and team were fab, and I was made a rather wonderful cup of tea afterwards by one of the radiologists who wouldn't let me be spirited away until I had finished it! They even shared their biscuit supply, so I've promised to take a cake in when I have the port removed.

 So, feeling a bit uncomfortable I'm wheeled back down to the DPU where I just about have enough time for a slice and a half of toast and to get dressed (and for a friend to be turned away from visiting by the guards at the door) before I'm wheeled round, in a chair this time to the Chemo dept for my first session.

The Chemo nurse, Richard, who takes me in is lovely, and as I'm starting on a cocktail of 3 drugs, has to sit with me the whole time putting them in. We had a good long chat about all the side effects I might experience, including red urine (some of the Chemo is red), and after a bit of a cry from me (it has been a long day), we start. 

Despite my misgivings and fear about having the port put in, seeing 4 or 5 people around me with their arms soaking in water to try and get their veins raised enough for a drip, I am extremely relieved that I have been given one. All I can feel is slight pressure as the liquids go in, and conversation soon takes my mind off it.

As well as the chemo, I'm given lots of anti-emetics via the port, which should last into the night, but I also have a list of pills to take when I get home which WILL, I'm told, stop me from being sick, which is good news.

My Onc Dr popped in for a brief chat and he seemed on reasonable form, other than calling me Tracey.... 

So, after about 2 hrs we are finished, and I sit with my bags and pile of pills ready to be picked up and go home. I bumped into a lady that I met when I had my node clearance - she's waiting for her first session, and we exchange notes. She has been a lot more sore than me post op, but seems on relatively good form.

I've got my next two sessions booked: 10th December and 2nd January, so on the up side Christmas and New Year won't be a total write off...

By the time I get home, I'm quite shattered but the children are due home any second, so I have time for a quick cuppa. Friends of ours have kindly offered to stay the first night and help, as I'm not allowed to lift anything heavy for the first day or so post port fitting (not worth me rushing home to be helpful then was it!) and my husband shouldn't be lifting the children either...

I feel okay for a while, but then get terrible indigestion and have to lie down. I take one dose of pills and keep my fingers crossed for a bit. Fortunately, the children go to bed quite quickly so they don't see me go downhill.

I was in so much pain from the indigestion that I rang the Acute Onc Team who are 24/7 and asked whether it's a normal thing. It isn't, but they are quite happy that it could be normal for me and advise me to take some Gaviscon and my next lot of anti-emetics.

So, I downed the Gaviscon and was sick within 30 seconds. Bugger. Just as well I got that toast for lunch....

On the plus side, my stomach was much less sore afterwards.

I won't bore you with all the details, but suffice it to say that my first night was miserable and I was ill every 2 hrs until I stopped drinking, at which point I managed to sleep and not be sick... not ideal, but it got me through. I eventually worked out that one of the pills I have been prescribed makes me sick - 2/3 times withing 15minutes, so under advice from the Acute Onc Team we decide to give that one a miss. I can't take the steroid I've been given as it has to be taken with food.....(whoops).....but can take one other which only makes me sick after 2hrs, which is an improvement on 15mins...

Tuesday was similarly awful and after a chat with the AOT I went to the GP's for an anti-emetic jab. Getting through the receptionists was hard work, but lets just say that they have had some early training on how to treat cancer patients and have been reminded that if they don't know what they can prescribe for sickness, they have specialists on hand called Doctors who do.....

Anti emetic jabs hurt like hell, but it worked and I got some sleep when I got home and managed to keep a couple of dry biscuits down.

I can't remember much of Tuesday in honesty, except sleeping in various positions, and eventually being able to drink. I was less sick towards the evening/night, that I can remember, and when the eldest child was upset overnight, I even managed to be a parent and cuddled up with her in her bed. I'm not sure who gave more comfort - me or her.

I have been re-reading parts of my blog, and I think I'm going to need every ounce of bravado that I have alluded to thus far to get through. It will all be worth it but my God I'm scared.

Sunday, 18 November 2012

Here we go again....

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.....

Friday, 16 November 2012


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:
  • Heavy
  • Hot
  • Itchy
  • Tight
  • Unnatural
  • Weird
The "hair" was also very static and flyaway, which was horrid, but also felt greasy at the same time as all the wigs were synthetic. I know that none of them are going to look or feel like my hair (pre pinkness and cutting) but I didn't expect to look like I was in drag.....

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....

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?

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? 

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.....

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.