Still going!

I always hated when these blogs disappeared into nothingness when I was going through treatment. And yet, here it is - my much loved blog that gave me such an outlet going unloved for almost 2 years. 2 busy years! 6 months after the last post my wonderful little baby boy was born and 1 crazy year later I am 4 months pregnant with his little brother/sister.

Today is world cancer day. Not sure what that means or what it achieves. To 'create awareness of cancer'? Who isn't aware? The way I see it there are two types of people: those who have been personally affected by cancer in some way and do, and always will, live with the effects or those who haven't and can't, until they are in the unfortunate group 1, truly understand anything beyond the general 'awareness' that these days remind us of. Maybe a day of remembrance? A day to think of those who are not lucky enough to be here writing meaningless, ranting blog posts to release into cyber space nearly 4 years after the diagnosis of this undiscriminating disease? My more cynical side says it's just another money making day. I hope some good comes of said money.

So any lasting effects of my illness/ treatment? Some lingering neuropathy which I don't notice anymore and the subsequent ear ringing which I don't notice anymore, straight hair instead of curly which is my life long dream, a dull, background, fear of relapse that will probably never leave me. Really though, the only thing that really gets to me now is, due to the suspicions I have that I inherited this 'non-heriditary' rare illness that has hit 3 generations of my very small family, the fear that I will pass it on to my children. I think about this every day. I coped with myself being so sick. I'm not sure the same could be said if it was him, or soon to be them. But, all we can do is live happily while being vigilant for symptoms. After all, if you've got to get cancer this is the one to get and all that reassuring stuff people spout when they are awkwardly trying to say something positive!

I can see that bizarrely this blog still gets hits, so whoever you are, I hope you see that very soon this can all be a memory. Keep going and do it with a smile. I really believe it helps. Good luck :)

Feel like it will never be over?

I can't believe it has been 8 months since I last posted here. A lot has happened and I feel like an update is still long overdue. I know most of my avid blog followers during treatment were friends and family trying to keep up with how I was doing, however I know from the snazzy visitor tracker that many were not and also that this blog still gets a shocking number of visitors who I can only assume are those nearly/ newly diagnosed who are, just like I once was, trawling the internet looking for any information (preferably in some way comforting) on what was about to happen to me. It is for these fellow hodgers that I feel this post is long overdue...

My last 8 months:

Oct-Dec: I learned that the no scan plan which worried me so much was the best thing that could happen. With no impending oncology/haematology visits, no impending scans and no constant monitoring of pseudo 'symptoms' in anticipation of these hospital induced tortures I found I could go hours or even days without thinking about Lymphoma. To the non-cancer patient this is no big deal. The rest of you will understand the significance. And the release.
Jan: I flew on an amazing trip to New Zealand to marry my wonderful now husband in the most beautiful place I have ever been. See exhibit A:

Feb: Returned from NZ and busied ourselves planning our Irish wedding celebrations
Mar: Irish wedding, a fantastically fun filled affair in one of my favourite locations with all my favourite people
Apr: We set off on our month long Asian honeymoon which ticked many of my world travel goals that I thought of during treatment. Being able to trek to Everest basecamp, climb the great wall of China, spend 3 days on the highest railway in the world etc. really reminds you how far you've come since those 'cant get out of bed' days.
May: This was the biggest achievement of all as this month brought the biggest victory in my recovery yet - it turns out pumping my body with toxic waste and exposing it to lifetime maximum levels of radiation had no effect on my fertility as this month we got our first glimpse of this new addition to our family who is due before the end of the year! See exhibit B:

September will be 2 years out of treatment. For those of you in the throes of it, take a look at how different things are one year later. The memories fade, the fear dissipates, the effects disappear and you're left with your life back. What could be better?

5 words

If someone told you that you could choose 5 words to be written in a letter to you and that no matter what they were they would be true what would you choose? You have won the lotto? Here is a pay rise? Here is a new puppy/phone/TV/ car/mansion? Hands down, no contest, if I had been asked this question at any point over the last 18 months these are the words I would have asked for:

And, because I'm an incredibly lucky person, or because people have been wishing it for me with all their might, or because I had a super medical team from start to finish, or because I went through a year and a half of grueling treatments , or because drug companies want to make money and so they research diseases and the best drugs for them, or whatever reason it can be attributed to, today I read those words.

I've done scans before, I've seen those words before but for some reason this time feels different. It's time to really leave it all behind now. If I could just figure out how.....

Onwards and upwards hodge blog readers. I know from views and emails I've received that fellow hodgers are still reading these posts. You'll get there in the end and when you do, life is great.

Insecurity

We all have insecurities. Will I lose my job, will my mortgage interest rate go up so high that I won't be able to afford the repayments, will my partner leave me, will my friends like my new dress, will that person I haven't seen in 2 years think I look old/fat/tired? But nothing can compare to the insecurity a cancer patient, even one in remission, feels.

Will it go away? Will it come back? Is it already back? Will I die? If this scan is OK will I have enough time before my next one to get my wedding and honeymoon done and what are my chances of relapse in between? (My current dilemma). These insecurities are so powerful, so overwhelming, and yet so surreal, that at times they can take over your mind completely. Now is one of those times.

Yesterday I did my one year post treatment scan. Today I did absolutely nothing productive. Tomorrow I get the results. Somewhere, in some parallel universe they inflict this on people as a form of mental torture. Here, it's just a day in the life of someone who has been blessed with the big C. At least I couldn't care less if I look fat anymore.

From scan to scan

Someone else I know who is still in treatment for a different type of cancer and has been for many years, said this to me recently - that everyone who has gone through cancer treatment will spend the next while living 'scan to scan'.

I am now 10 months out of chemo. I have a great head of hair, and hair in all the other places I never wanted it. My lungs are very much improved. My neuropathy will still wake me up at night and the ear ringing drives me crazy at times but I will gladly and easily live with these reminders of the treatment that saved my life. However, there is not one day, or one hour that passes without thinking of relapse. That feeling when you remember something really important that you've forgotten and your stomach does that little flip - it's like that all the time. Working at a desk - stomach flip. Reading a book - stomach flip. Smiling at the dogs playing in the sprinkler - stomach flip. Don't get me wrong, I'm far from miserable sitting around thinking about it all the time and it certainly doesn't cause me to lose sleep (that's the neuropathy) but it's still always there making everything seem just a little bit worse but also a just little bit better.

How to really move on is the current dilemma and it's one that is not often talked about in the cancer world. I'm no fan of the cancer warrior/battle imagery as I have mentioned before but I am starting to think that the real 'battle' is what comes afterwards. Does it just dissipate in time? Will I one day be able to say that Mr. Hodgkins hasn't crossed my mind for a week? A month? Maybe. Hopefully. In the meantime though I am very conscious of the inclination to wish your life away - live scan to scan- waste that life that you worked so hard to keep. I'm 10 months down with 14 months and counting to be out of the high risk relapse danger zone. My next scan is in September. If someone has some suggestions for ways to not wish those 14 months away please let me know. On the other hand, being so conscious of time means you are more inclined to make the most of each day/week/month. Ever think 'wow I can't believe the year is over half way done, it's July already'?? Well if you were counting months away you wouldn't- I'm being extra productive and loving it!

So, mental anguish as above aside I'm doing fantastic! We have had a new addition to our crazy little pack in the form of a 9 week old springer spaniel X beagle puppy who jumps, eats, burps and runs like no creature I have ever seen. He must average around 4 hours sleep out of every 24 which means we average 3.  There are few things that can bring joy to the soul like a puppy. Joy to the soul, pee to the floor, holes to your clothes, scratches to your face, bags to your eyes and destruction to your house and garden. But I wouldn't change him for the world. I will never forget the comfort that Louie the beagle brought to 2012 a.k.a. the year of the couch. If I relapse I will now have double comfort, if I don't double fun.

In terms of this blog I am finding it amazing that it still receives 100-200 page views a day despite 3 measly posts in 6 months. There are plenty out there still enduring treatment obviously. Keep at it! There might be a bit of craziness at the other end but one day soon the wind will blow and your hair will fall into your eyes and a huge smile will cross your face when it occurs to you that it's been 2 years since that happened and it will be the best feeling ever...

6 month check up

It has been on my mind for a couple of weeks now to update the blog. But, as tends to happen when you have things other than cancer going on, I just never got around to it. I love having things other than cancer going on! The final push came in the form of a check in email from someone who I have never met, but who brought so much light to 2012 for me that it reminded me of my promise to keep the blog up to date and not become one of the cancer bloggers who disappear when there's no bad stuff to tell.

The biggest and most relevant news is that I had my 6 month check up (so 7 months post chemo) and my scan showed NED (no evidence of disease - oh how I love ned, my next dog has already been named, Ned is a great name). The week leading up to, and the 5 days post scan, were HELL. I literally imagined every symptom you can have with Hodgkin's including all the ones I didn't have on initial diagnosis and convinced myself it was back. The consultant puts my 'scanxiety' down to the turbulent time I had around the mid way check up scan that some of you may remember revealed remaining disease and bought me 2 more months of chemo and moved me into the 'least likely to be cured' box. My bloods last week showed a few levels on the upper limit of 'normal' but, the day after the test, I came down with the most horrendous flu/chest infection/everything infection that totally knocked me down for a week so I'm putting my high white cell count down to the fact that it was fighting off the mother of all viruses. So, I'm signed off from stabbing, scanning and poking for 6 more months unless I develop any symptoms. As that will be my 1 year post treatment scan they want to do a PET instead of a CT to make 100% sure and, all being well, it'll be CTs from there on out.

In other life news, during our holiday in Mexico last month while scuba diving, Nick proposed - wedding planning time! I joke that I tested out the 'in sickness and in health' thing a little early but at least we know we've got that one down. Pretty sure we can put the 'for better or worse' thing down as cancer too so that makes two of them. This marriage thing will be a piece of cake. One of my mid-treatment decisions was that I needed to do a round the world trip, ticking some of the bucket list places. Round the world honeymoon? Yes please!

It is also worth mentioning, while we are semi on the subject of scuba diving, that I had been told that scuba diving post ABVD chemotherapy may not be safe. As the Bleomycin (the B in ABVD) damages the lungs, there is an increased risk of lung complications at depth, breathing pressurized air. I had decided it was something I would just never do. As amazing as diving is surely it isn't worth the death risk? So, when we were in Mexico and Nick was so insistent that I went diving, I was a little concerned he was trying to get rid of me. After a couple of days of nagging, I decided to get in touch with the consultant to get his thoughts. He felt that as I had no specific lung issues during chemo (meaning nothing other than the shortness of breath that is par for the the course) that I would be fine, but to stay shallow (15m) and be extra vigilant. So, for all you ABVDers who long to swim with the fishes, don't write it off. You may still be able to go.

The hair is coming along nicely. Definitely looks like a very short haircut now as opposed to hair growing back.I have dutifully attached a picture taken FAR too early this morning for the purpose of this blog (I generally don't take early morning photos, or any other time photos, of myself) but you get the point:

I have taken to wearing hairbands - helps with the 'butchness' of my hair. The flowerier the better. Butch people don't wear flowers in their hair right? Sometimes I feel like one of those baby girls whose parents have stuck a bow to the side of their head so people know they're a girl. But hey, I'm not complaining, my hair is growing and growing, I HAVE HAIR. I have learned my lesson a hundred times over - I will never again complain about hating my hair.

So that's it, no more news. Life back to normal. Work, home, dog, holidays, weekends, housework, car troubles, laundry, I love it. There is a lot to be said for the mundane. And for Ned.

Milestone Haircut!

So, it has been another month, almost 2, since the last post and life carries on. Work is normal, home is normal, life is normal. Normal but different.

Last night I had my first haircut in about 16 months and for the first time in that 16 months my hair is longer than Nick's again. Albeit more to do with the fact that he had a haircut also the day before me and they were a bit over-zealous with the razor than it is as a result of my own hair growth but a nice milestone nonetheless.

I was also at the doctor last weekend, nothing to do with the hodge. During chemo I got quite bad ear ringing that was put down to nerve damage. Towards the last month a kind of crackling was added to the ringing. This has continued, along with the ringing, since then and has gotten worse over the last week. A couple of days ago I had had enough and decided that it was obviously unrelated to chemo and to go to the doctor. Two interesting things came of it aside from the doctors diagnosis of 'its nothing, put these ear drops in, you'll be grand' in true Irish style. Firstly, when looking in my ears he announced that my ears looked healthy. That's good. Then that they looked clean. That's nice. Then that overall my personal hygiene was excellent for a teenager. Hmmmm. At 28 years old and rocking a middle aged at best hair do, I'm not sure if this is an insult or a compliment. But, more importantly, I realised just how 'fine' I feel to even notice the crackling in my ears. 6 months ago it was the least painful/irritating/upsetting and worrying of a world of symptoms. Now, it's all I have to complain about. That's a weirdly nice feeling! And now that we have confirmation that my personal hygiene is up to scratch and that my hair is no longer the shortest, Nick has nothing to complain about either. Poor guy has had a lot to put up with.

The hairdresser asked me if I had been self conscious about going bald headed. I told her not around friends and family but I'd never been able to muster the courage to go out in public. She asked did I have a boyfriend and when I said yes she asked did I let him see me bald. I told her I lived with him and so it would have been hard to hide. Oh, she said. Silence. 'And are you still together'?? HA! Well, this is coming from the same person who said she always thought that it must be so hard to have no eyelashes because all the water would get in your eyes in the shower. Genius.

Anyway, so end of April is my scan with results appointment first week in May. I won't say that relapse doesn't enter my mind 125 times a day, because that would be a lie. It's 155 times a day. Rather than decreasing as time goes on, the worry seems to be increasing as it gets closer to scan time. I think the 6 month wait was too long. After April I'm planning on insisting that someone at least gives my neck a bit of a grope and stabs me for some blood tests every 3 months for a year or so. 6 months with no reassurance is torture. So, to take my mind off it, post chemo lovely holiday #3 is upcoming, 9 days to be exact. I'll be sipping Corona and eating guacamole while on a perfect beach in Mexico. Heaven.

I'll sign off for now, hope you're all doing super :)

Sx

Back to 'normal'

But what is 'normal'? It's been so long since anything about life felt normal that I've kind of forgotten what it felt like. One thing (aside from my hair - more about that later!) that is getting back to normal is the way my brain makes associations with certain foods, places and even words. The words is the most interesting to me - anyone who has never had chemo/cancer would never think that ordinary words can take on such negative connotations that they can make you recoil in a gagging ball at the sheer mention of them. For example: Shots (went from fun tiny alcoholic beverages to pain inducing, self injectable little needles of hell), Saltwater (went from sea, holiday, swimming to nauseating 4 times daily mouth rinsing), flush (the function of a toilet? Nope, little syringes of saline that are pushed into your veins 27 times per hospital visit), dressing (the act of putting on clothes? or the bandages that cover the cuts, scars, and permanent tubes hanging from your arms soaking up the blood that permanently leaks due to blood thinners?), drip (probably one of the worst, no longer something that happens to a tap but instead the little drip drip drip you watch for hours on end willing the IV bag to empty into your veins faster so you can get rid of it), alcohol (this is NOT as much fun to have swabbed over your open wounds as it is to drink. And the smell. Bleugh), piece (everyday word, or wig?) rads (radiators? or radiation?), mass (catholic church service or tumour?) and it goes on and on and on.... But nearly 4 months on (WOW!) the negative connotations are giving way to the old meanings again. When something chemo-ey pops into my head now I smile to myself. The same thing happens with the very words 'cancer' and 'chemo'. These words become a strange badge of honour, something to be proud of. I did that. I always did wonder is it possible to finish chemo and be proud as opposed to afraid? I'm proud of what I achieved last year. I'm proud to be out the other side. I'm still afraid that I'll be catapulted back into that world, one more mutated cell is all it takes. I guess you can be scared and proud at the same time.

In the spirit of returning to normality I ditched the wig this week. A full week of no wig. I think too little emphasis is given to the trauma of going through the hair regrowth stage. You imagine losing it will be difficult, and that having none will be difficult but assume that when you start sprouting again all hair and image issues will suddenly disappear. Wrong. I went from curls down my back to this. Don't get me wrong, I'm happy to have it, but it's still not me. The first time I tried to venture out without a wig/hat last week I cried in the car. I was only going to the hardware shop (surely this is somewhere a shaved headed woman wouldn't be too conspicuous?!). It was terrifying! Like I was naked. Then I came to the same realisation I came to the day my hair started falling out - this is just how I look now. For a while. And so, a whole week, no wig.

I am minus 20lbs of the 40lbs that I put on in the couple of months of pre-diagnosis eating and sleeping and the 6 chemo/steroid months. They fell off with very little effort for the most part. It's getting tougher though so I think some serious dieting and mild exercise (still too unsure of my lungs to attempt anything else) is in order.

I also have been back at work full time since January 2nd. I don't feel any more tired than I would have before I got sick. Overall I was pretty surprised at how well I coped and also how it instantly felt like last year never happened. Life as usual. The world carries on. And for this I am very grateful.

Hair picture anyone?! This is my new do. This week. Who knows by next week!

Goodbye for now blog world, I know from the stats that this blog still gets approx 200 views a day. I hope that means that someone, somewhere is benefiting from it. If you're in the midst of it, keep going, the end and normality IS near. Really soon, you're going to be very proud of yourself.

Two months on...

Wow, it's been a month since I posted. Strange to think that only a short time ago this blog felt like my right arm... I couldn't go 5 minutes without writing, reading comments, wondering if I should post or wait until I had something actually interesting to say... needless to say, I never waited.

Things are slowly but surely going back to normal for me. I am exactly 2 months post chemo. I can get up the stairs in my house without nearly fainting, I am sprouting hair (a little too much in some places for my liking -  I'm 100% positive I did NOT have black hair on my ear lobes before all this started) and the steroid weight is starting to fall off. I can nearly get into my 'fat' jeans again. Not a hope for my 'skinny' jeans but given the 3lb a week weight gain there for a while I'll take my fat jeans with a big happy smile. Blood thinning injections are finished. There is only minimal stomach bruising still visible. PICC scars are healing nicely and my nails are making a comeback.

The cancer hilariousness hasn't stopped - every day there is something that cracks me up about it. Example - last week, crowded park, wig meets low hanging branch and suddenly I'm bald. Desperately searching the ground for it amid the stares of strangers, Nick helps with repeated 'its behind you, it's behind you's ' (obviously through his hysterical laughter). It's not on the ground. I turn to the dog with an accusatory glare, he has obviously stolen it. Nope. Finally, I feel it on my neck. It was in my hood. I put it back on as quick as I can, Nick catches his breath and we all continue our walk. Embarrassing cancer experience #312 survived.

I have decided to go back to work full time in January. Seems like a good time to 'restart'. I will also be joining the gym in an attempt to lose the remaining 30lbs of cancer/ steroid/ eat like a pig and lie around weight. Hopefully it goes as easily as the first 10. No such luck though eh?

People keep asking me do I feel different now. Different? Well, I feel bald and fat and old? Mentally, I don't know. I feel like I should feel different. That if I haven't 'learned something' from all this then it has all been a waste. Crazy obviously, I didn't do chemo for an education, I did it to survive. Still, I can't shake the feeling that it was sent to teach me something that I am yet to pick up on. One thing is for sure though, life is going to have a hard time stressing me out after this. When you've been to hell and back it's hard to sweat the small stuff. That said, relapse stresses me. There is not one hour that I'm not feeling my neck for lumps, asking Nick to check if it looks even on both sides, wondering why my shoulder aches - heavy bag? Nope, MUST be cancer. This should pass in time. Right? Officially cured at age 43, 15 years after diagnosis. Come on 43, come onnnnn 43.  There's another thing I certainly won't begrudge - growing older. I can't understand the people who say 'urgh my 60th next year, awww I don't want to be old'.... Were you planning on dying young? No? Can't see your gripe then!

One of the reasons I started this blog way back when (April, feels like a lifetime ago) was to 'repay' the cancer world for the wonderful blogs that I read throughout my 'uh oh, do I have cancer' diagnosis stage which many would agree is, mentally, the toughest part. I hated when I would spend hours reading a blog from start to finish and suddenly it would stop. Sometimes with posts like 'I've relapsed, I'm scared' ARRRRGGHHHH WHAT HAPPENED TO YOU???!!! I am determined not to become one of those. I will keep this as up to date as possible. However, no news is good news where cancer is concerned and the rest of my life isn't interesting enough to write about so if you check in and see nothing for months - be happy, it means I am well and have managed to keep the beast at bay long enough to live a bit :)

Oh and for those are are curious, here is 2 months post chemo hair - enjoy!

As you can see, 'very short hair' is no more flattering to the big nosed than 'no hair'

No, I still haven't mastered back of my own head shots, this was the 57th attempt and at this point I gave up.

Final score:LymphSona 12- Pacman 0

It's official - it's gone. I got the news last Friday but wanted to wait until I was 100% sure (after my near miss with remission 4 months ago) before I posted on here.

I saw the head honcho yesterday who confirmed (and then I confirmed it because I took the scan report to read in front of him) that everything is 100% normal. No enlarged nodes which is kind of a big deal for us NSHL folk whose disease causes 'scar' nodes to be left around the body. No FDG uptake on the pet scan which means only cells that we WANT to be there are actually there. No apparent long term lung damage (which means no more steroids and I can allow my lungs to repair naturally). I am allowed stop my blood thinner injections in about 2 weeks once I've finished a course of 3 months which my poor stomach will definitely thankful for (it's getting VERY difficult to put on socks with all these bruises. Woe is me.) AND.....too much information warning....look away now..... I got my first period in 4 months which means NO MORE MENOPAUSE AND NO INFERTILITY da daaaaaaaaaaaaaaa :)

I was allowed walk out of the building with only a promise to return for a check up scan in 6 months. 6 months with no doctors, nurses, hospitals nothing. I don't know how I'll cope. Aside from being deliriously happy all the time and especially every second Tuesday when I don't have to get up and go for my poison pump.

Now that I am officially in remission I've decided to put myself on hair watch. Unfortunately I don't think I took many pictures of the remnants of my hair towards the end, but suffice to say it was pretty dismal. A few long wirey stragglers that I couldn't bring myself to just shave off despite Nick's begging. What if they gave me a head start (excuse the pun) in hair regrowth stage? Turns out he was right, they all either fell out or were so useless I just shaved them off. So, here I am, 6 weeks out of chemo officially on hair watch 2012....

I have a hairline, and lots of tiny, thin, but finally once again NOT WHITE, hairs!! I do look a little unsure in this picture, let's face it, I don't exactly look good so it's hard to be beaming with confidence :) Please also note 16 eyelashes. 

And from the back. Apparently, not an easy task to take a photo of the back of your own head. I got there in the end. Kinda. But look at all those pretty hairs!! Not a lot as such, but it's a lot to me :)









So what now? Well, in the immediate future I'll be off on holiday number 2. In the next hour in fact. My two boys are being left home to fend for themselves while I head back off to the sun. I haven't been away from them in a year. The idea of it now bothers me a huge amount. Time to cut the apron strings Nick, I'm off again!

It's a weird feeling to think I'm done. Can I really just say Ok, done, back to life as it was before? Or will something always seem just a little bit different? Or a lot different? One thing is for sure. Lesson learned - you never know what's coming for you. There's no point worrying, worrying about things, by it's nature, means you've already considered them and their consequences. The only thing that can really throw a spanner in the works are the things you never thought of. The things you never thought could happen to you. Even then, you cope.

I intend to keep the blog going,  not just doctors appointments (as not much point in keeping it going once every six months) and certainly not about my daily life as, without cancer, I'm fairly boring. I'll just see what happens. Thanks so much for your loyal readership, comments, kind words and love so far. I mean it when I say it would have been quite a lot worse without you xxxx

The hardest part

Well, after a loooonnnggg few months, a little break and an AMAZING holiday, it's finally October (actually mid October - blame the amazing holiday for my absence). October is the month I have been waiting for all year. The month when chemo (for now anyway) would be over. Weirdly, it's been quite anti-climatic.

I'm wondering is it that I haven't been scanned yet to see what's what (scan Nov 1st, results on the 5th, holiday #2 on the 6th!). Maybe until I hear that word 'remission', and for real this time, not as the result of someone's cock up, I can't begin to move on. Maybe I simply won't move on even if I do hear that R word and instead will live in a kind of limbo, waiting for my relapse as if it's a certainty. Maybe I won't be hearing the R word at all and will be spending my holiday thinking about the bone marrow transplant that awaits me on my return. Or, maybe it will simply never sink in that chemo is over and then it will just become normal soon to be forgotten. 'Remember that time you had cancer?'

Just before I left on holiday, someone close to me asked what the hardest part of the whole experience so far had been. I told her that I expect the hardest part to be yet to come - the battle in my mind between wanting SO MUCH to put this behind me and not being able to forget that it's like a vicious guard dog, fenced in but snarling and ready to attack given the tiniest opportunity. Wondering if every twinge, every time I feel tired, every cramp in my neck or chest is a sign that it's back. That the dog has gotten through that gate and is chewing it's way through my body once again. To take that battle a step further you then need to throw in the irrational guilt - the feeling that just by thinking about relapse, by not being optimistic, by worrying about that dog getting loose that you are losing. You are moaning. If you mention the possibility to people naturally their first reaction is 'No, that won't happen, think positively'. Hmmmm easy for you to say, let's see how positive you would feel if you could no longer trust your own body after it has tried to kill you!

Weirdly, it hasn't been affecting me as much as I thought. The fact that I am no longer 'actively' fighting pacman and his buddies is not as scary as I had anticipated. It made me realise that in fact the hardest part was feeling relatively well and getting out of bed, going to hospital and allowing people to hook you up to the bags of poison, knowing all too well how you would be feeling by the end of the day. Nobody who has not been through it could imagine the willpower it takes to ignore the voice in your head yelling 'STOP WHAT THE HELL ARE YOU DOING DON'T GO IN THERE'!!! 12 times. That kind of endurance and motivation deserves that not only do you come away with your life and your health, but also a medal. A BIG one. And probably some sort of substantial cash prize. 

Who knows though, I'm still a baby in the cancer world, I don't even know do I still have it or not. The hardest part may very well be yet to come. I however am spending each day living under the assumption that the worst is well and truly over. What else can you do? If you spend the rest of your time living in fear of that dog getting loose and attacking you again then he might as well have killed you the first time.

The end of chemo (for now)

I am always too scared to say that I have 'finished' chemo, or that this is over, like it would be tempting fate to say (type) that. So, I'll say that THIS round of treatment, for now, fingers and toes crossed, is done. DONE DONE DONE :) It's been 4 days since the last 4 bags of poison were dripped into my poor veins. It was the worst dose yet. I was so sick, no amount of anti-sickness pills could get it under control. It was 'swallow a pill and a mouthful of water and immediately up comes the pill and the mouthful of water' sick. Horrible. Nick says I had to go out with a bang, like the grand finale of a fireworks display. I say it's more like chemo saying 'right, if this is going to be the last time I get you I'm going to make it count'. Whatever it was, it was unpleasant. It will also probably leave me with a skewed memory of chemo. Not that I would have remembered it as NICE, just not AS bad as that last one was. Then again, I'm convinced women are born with an innate ability to forget how bad things actually are. This is why we have more than one baby and why I have agreed to travel to Peru and do the Inca Trail to Machu Picchu AGAIN with Nick. If we didn't have the ability to block out the extent of pain and suffering associated with these decisions, we would surely never agree to voluntarily go through them again?

So my next scan will be on November 1st. If it's clean, I get 3 months off hospitals until the next check up. If it's not I get 3 months of a higher dose chemo and a stem cell transplant. There are no words to describe how much I want it to be clean. In the meantime, I have nothing to do but sit around and wait, trying not to think about it. Oh and go on holidays. HOLIDAYS!!

My shopping list for this holiday has been quite bizarre. One piece swimsuits to cover blood thinner injection bruises and my extra huge belly, a shorter wig, a big floppy hat, flat shoes (heels make my calves cramp up...who knows what that's about), SPF 50 suncream, a large supply of medications and 5 stretchy maxi dresses since none of my other clothes fit me. Good times. Couldn't care less though, I'll happy sit by the pool looking bloated and bald with a big smile on my face. Like a big, grinning humpty dumpty. Poor Nick.

Maybe it's because today is the first day I feel even slightly 'normal' or even human, or maybe it's because it hasn't quite sunk in yet that I don't have to go there anymore, but I don't feel that incredible elation at being 'finished'. However, next Tuesday, when I'm on the beach instead of in the chemo ward, I'm pretty sure how I'll be feeling.

Onwards and upwards, it's all just recovery from now on...... :)

The end is in sight

It's confirmed, my last (hopefully) chemo is on Monday and they will also be pulling my PICC line that afternoon so after Monday there's just one quick blood test the following Monday and then it's holiday time! No more appointments then until my end of treatment scans at the end of Oct/ start Nov. I can't believe how weird it feels to think I'll have 3 weeks with no hospital visits. Having gone from not being in a doctors office once in the 5 years up to 2012 and even then it was just for travel vaccinations, to this was quite a leap. I think the leap back is going to be even more traumatic.

I've said all along that as much as I wanted chemo to end (and BELIEVE ME I want it to end) I think the hardest part of all this is going to be the day they say 'OK go home, see you in a few months for a check up'. But....but....but.... what if I get a temperature? What if another limb turns blue? Who do I get to check it if I'm not in the hospital every second day? Just how dangerous is a regular cold/flu? If I get one a month after chemo do I still need to go to A+E or do I just carry on as usual? How do I cope with the thoughts that I'm not doing anything to fight cancer? Surely I'm not expected to just go back to normal? Wait? Wait to hear it's gone? To hear it's not gone? To hear it's back? While I'm doing chemo I'm DOING something. As soon as I stop the ball is back in Pacman's court. I'm out of control. Ah who am I kidding, the ball was always in Pacman's court. I never had a single shred of control over this. So nothing's changed. After Monday I'll have done all I can do in terms of frontline treatments. If it hasn't worked, I'm in trouble.  If it has, for how long? Will this be the end? I know it's going to sound INSANE, but I feel like if that's the end then I got off too easy!! Don't get me wrong, it was far from easy, but I coped. Ok, enough. I'm going to assume it worked, enjoy my holiday(s) and not think about it. HA. I wish.

I have invested in a large tube of arnica gel in an attempt to curb the intense stomach bruises. They are really getting out of control. Pretty soon I'm going to have to start injecting my ass cheeks if some of them don't start to fade. I'm out of belly space. Even with the steroids. Turns out the smell of the arnica drives Louie mad, that beagle nose doesn't miss a thing. It's not a problem, but trying to cover your midriff in gel is pretty hard with 20KG dog jumping up and down beside you like he's on a mini doggie trampoline at your feet and doing everything in his power to grab the tube while barking. Louie is hereby banished to the garden for all future arnica applications. Just hope the smell of the gel ON my stomach doesn't incite the same reaction or he'll be living in the dog house from now on. It's a nice dog house in fairness, has a porch. Fancy.

Time to walk said beagle. 3 more days. So close I can smell it. Actually, that's probably just the arnica.

Strong Trees

Today I received the most wonderful gift - an old neighbour (as in someone who used to be my neighnbour as opposed to a neighbour who is old!) called in during a short visit to my parents house to give me a painting she had done for me. She called it 'Strong Trees', because you're so strong, she said.

It made me think of how many people have said this to me over the last 6 months. People have even gone so far as to say that seeing my 'strength' has made them worry that, should something like this ever happen to them, they would be unable to cope in a similar manner. Well, let me reassure you.

If somebody, a year ago, had told me I would be where I am now and I would be fine with it, I would have never believed it. I would have thought I would crumble, wallow, break. I haven't. Why? Who knows. My only explanation is that it doesn't all come at once. It starts small and grows. However, by the time you take the next hit, the previous one is already the norm and you've grown stronger from the experience. That's life. It's not a co-incidence that in general a 60 year old is going to be better equipped emotionally and mentally to cope with a traumatic experience than a 14 year old. Let me use my own short story of the last 6 months as an example:

Lumps in my neck, assumed to be an infection, I go to the doctor. They rule out one thing after another, lymphoma was mentioned but never ruled out. Over the 3 weeks of testing, biopsies, scans, appointments, I was scared, cried, panicked, worried and came to terms with the fact that I had cancer. By the time I was diagnosed, I was no longer scared. I spent a week researching and learning about chemo. I prepared myself mentally for the sickness, the pain and made the decision that I was going to have to drag myself up each time lest I spend the next 6 months in bed. By the time the day came I was no longer scared. On this day I experienced the worst sickness I had ever had and over the next few days I recovered. By the time the next one came, I was no longer scared. I knew that this was the point my hair would fall out, I was terrified. The day it started was a low point. Suddenly it was real, really happening. I cried again. 3 days later I shaved it off. From then on, hair loss didn't bother me, not once. As I watched it fall from my head, eyebrows, eyelashes, I was no longer scared. After number 3 my blood counts plummeted. I received the infamous shot of neulasta. This week was the worst yet, I was in pain that made me cry...all day every day for a week. By the next chemo, it seemed like a nice day out in comparison. By the time it came to another shot, I opted for the daily self injections. With that pain as an alternative, self injection seemed like a much better alternative. After the worst pain of my life, I was no longer scared. At this point my veins had failed. I needed a PICC line inserted into my arm, through my veins to my heart. This tube would hang 4 inches from my arm, held in place with a plastic lock stuck to my skin, for the next 4 months. This was unfathomable. I felt sick going to have it inserted. I couldn't look at it for days. I held my arm awkwardly, was conscious while sleeping, with sleeves, towels,  the thought of tugging it was terrifying. At the next chemo I realised how smooth it went, how much less painful it was than the vein game I had gotten so used to, how I had no aching, no chemical phlebitis. I realised this tube was my friend, I was no longer scared. After 4 chemos I had a scan. All clean they said, 3 more chemos. 3 days before the last one, I was called to the office. A mistake, it's still there, I need another 4 chemos. This drastically reduced my chances of PFS (disease progression free survival, the ultimate goal of all cancer patients). I could not have been more scared, depressed, worried. It took 2 days to convince myself that the only thing I was going to achieve by worrying, was ensure I was going to lose this fight. It was not over until it was over. I was no longer scared. The months passed, one day my arm started aching. I ignored it, having gotten very used to aching. A couple of days later it was also swollen and blue. I knew this must be a clot. I went for a scan, I was right. The PICC Line needed to be pulled, I would have to do daily stomach injections for 6 months and have another line inserted in the other arm. Having been through the previous events, new PICC line, stomach injections? Please. Piece of cake. I was no longer scared. Next month, 5 weeks after treatment 12, I will have another scan. This scan will determine if treatment is finished or I need to continue to high dose chemo and transplant. It will give a very good indication of my chances of PFS / relapse going forward. I am very, very scared. If it's bad news, I'll be upset, I'll cry, I'll be scared, I'll wonder why me, I'll go to the hospital, I'll get more chemo, do the transplant and wonder why I was so scared. If it's good news, and this is over forever, I'll return to life. Just with a different view of what's worthy of my worry.


What I have is not strength, it's a different perspective than I would have had last year. When you are faced with your death, are you going to worry about self injections? A tube in your arm? Pain in your bones? No. And you're certainly not going to worry about your hair, the embarrassment of talking at length about bowel movements and yeast infections. You wonder how people can worry about things that last year would have been normal concerns, can I afford this holiday? Someone scratched my car in a parking lot. My co-workers were bitching about me in the canteen. pfffft. Yeah right. The truth is that you never realise how strong you are until there is no choice. You don't face each obstacle thinking 'OK I'm going to be strong'. No. There's just no option. You have to get through and so you do. It's not bravery, it's not strength, it's survival and in my position, you would be exactly the same. It certainly doens't hurt to have an awesome family, awesome friends, a Nick and a Louie each time you get knocked down though to remind you of the reasons you have to get back up.

Strong trees don't become strong overnight. Each day, each event, makes them more resilient. More beautiful.... Thank you for painting this for me

Cumulative effects

They weren't lying - the effects of chemo are definitely cumulative. It's now chemo Sunday. A day where traditionally I would have been back to 100%. Not last time. Or this time. I woke up in pain, all over, my jaw, my shoulders, my face (who knew you're face could hurt for no reason?), my legs, arms, urgh. I got up at 1pm, went for lunch, to my amazing sisters latest stage spectacular and was back in bed by 630. Weak.

I've found accepting this new 'half' me really tough. Cancer is always synonymous with imagery of battles, warriors, strength. They make you think that if you're lying in bed feeling sorry for yourself and your aching body that you are somehow losing. Letting the cancer win. You start to feel like if you take those extra few hours sleep that you so clearly need and then hang about in bed for an hour after you wake up that you have lost your fighting attitude and you actually start to feel guilty. Like you're being a pushover, letting it get you and thus letting it win. Then, you start to feel guilty just for feeling sorry for yourself. Like you're being ungrateful for the fact that you're still even alive when so many aren't and cancer does nothing if not make you grateful right? Or guilty for moaning about the bad days rather than being thankful for the good. Guilty for letting those around you, who are already worried sick, see that it's beating you into submission, worrying them further. Guilty for those who have to pick up your slack.

I get how crazy this is, I know you're reading this thinking that I must be mad to think that anyone would blame me for taking a few extra hours sleep and not pulling my weight in terms of dog walking duties but for some reason it's there. Nagging me, shut up, get up and keep going. I'm starting to think that this unreasonable guilt may be what keeps people going. Whatever it takes. I have seven days until my last chemo. Sixteen until my holiday. Whatever gets me there!

The chemo truck

The chemo truck got me again. Everything hurts - bones, muscles, joints, skin, eyes, chest, stomach, mouth, head, bowels, back.....

I've been asleep for the best part of the last 24 hours, for the hours that I've been awake I've been unable to move. Lying here wishing it was over. Wishing that was the last time the truck was going to get me. Wishing I was one of the people on the tv I've been staring at since they don't seem to be in any pain. Even the idiots on Jeremy Kyle. You know things are bed when you're jealous of THOSE people. Or when trying to find the remote seems worse than spending 2 hours watching THOSE people.

Now I just wait for the next three days to pass. ONE MORE.

24 hours from one more

This time tomorrow, I will have one more chemo left. I have however felt sick all day thinking about tomorrow. This is a great lesson in willpower. Come September 25th, nothing will ever require this amount of willpower. Want some cake? Nope. What would you like to do today? A jog. Anyone for wine? No thanks I'll have some water. Easy. Very easy. Anything is when you compare it to dragging yourself into that chemo room. All in the name of life though. I hope I can apply the same conviction to everything else I want to achieve once this is all over. Now that I know it can be done I have no excuses. Something tells me however that all I will ever want to achieve is having fun and not having cancer. I probably had more ambition before this happened. Then again, 'not having cancer' seems like a fairly sensible life goal right?

So this has been a relatively uneventful 'good' week. No major health scares, no clots, extreme pain, crazy numbness or unexpected side effects at all. Mr. Extreme Fatigue is alive and well and other than that and the lingering clot issues and the usual GI issues it has been plain sailing. I'm kind of hoping I've had all the 'in rare cases' side effects and that there will no more surprises. Then again, I've gone and had that thought now which mean's fate will more than likely strike me down with something crazy this week. Blue limbs or something. Oh no wait, I've had that.

On the subject of blue limbs, the arm clots are still improving. The biggest clot related issue is now the stomach bruises at the injection sites. Each day and it's corresponding injection brings a 2-3cm bruise. I have a problem injecting into an already present bruise and am fast running out of space. Maybe it's a good thing that my stomach is double the size it was 6 months ago or else I would have run out of space much sooner. Nonetheless, I'm having to go higher and higher up near my ribs with the injections (even less pleasant than doing it near the belly button). I have however bought two one piece swim suits for the holiday though, so, like so many other things, only poor Nick gets to witness the full horror of the situation. Couple more months of injections and hopefully the only shots I'll be doing will once again be the alcoholic kind. (One day I should do a blog post about the new meanings some pretty everyday words now have to me, the list is growing!)

In other news, I'm pretty sure my new menopausal state is bringing with it hot flushes. I'm ashamed to say I've always brushed this menopause symptom off with a kind of 'oh get over it, so you feel warm for a minute, big deal' attitude that can only come from someone who has never experienced it. Allow me to describe a situation for the other 20 and 30 somethings out there who are yet to experience the joys of what we will all face in 20-30 years....

I'm sitting at a table of 5 friends. The room temperature is perfectly comfortable. I'm wearing a dress with string sleeves and a cardigan. I start to feel warm. 30 seconds later my legs are sweating (????) so I pull my dress up around my thighs under the table. Then my arms are sweating. Off comes the cardigan. My face turns bright red. One friend asks am I warm. Next thing I feel sweat dripping from my forehead into my eyes. I dab them with a napkin. Another friend starts fanning me with a menu. I feel sweat dripping down my back from my head. I lean under the table so nobody can see and pull my wig back to let some air at my head. I use my napkin to dry the sweat off my chest that is falling from the front of my neck. The waitress brings water. 2 friends are fanning me with menus. Within 3 minutes the sweating has stopped, the wig is back on, the dress is back down and I'm sitting with 4 very confused faces looking at me. Hot flush, I say. You need a shorter wig, they say. Good idea.

The next day I'm at the wig place, asking for a smaller, lighter wig. It happens again. The woman who owns the shop is wiping sweat from my head with baby wipes before giving me the wigs to try on while I strip to little more than underwear trying to cool down. I make a mental note to add this to the list of most humiliating cancer experiences. My mother and I are in stitches laughing at how ridiculous this situation is. I pay for my new, shorter, lighter, cooler wig and leave with a new found respect for women who suffer this for years. Never mind fertility, the hot flushes alone are reason enough to want menopause to be temporary.

So, tomorrow is number 11. Today 2 weeks will be number 12. One week before my 28th birthday. No more cancer in my 29th year please. Actually make that any year. I've had enough. Ok? Thanks.

Judging eyes

It happened again, another idiot with some sort of issue that they feel the need to take out on me. These last few days I'm very very VERY tired. My daily outing rarely includes more than a half hour trip to the supermarket in order to provide my other half with the gourmet lunches to which he has become accustomed since realising the benefits of a live in partner on long term sick leave, which he sees as 'stay at home wife with nothing to do but cook and clean'. He's disappointed on an ALMOST daily basis.

Anyway, today's outing brought me to M+S to pick up some lunch time yummies (see why I say ALMOST always disappointed?) where I met 'bitter that I'm working and not claiming benefits' lady. The conversation, started by her, went something like this. Lovely day out isn't it, yeah it's lovely. On a day off are you or did you call in sick for the sun ha ha ha ? No I wasn't supposed to be in work today. Oh, on holidays? No, I'm off sick at the moment. Ha ha ha and you're out, that's brave, what if they see you and know you're not sick? Well I'm on long term sick leave so it's ok if they see me. This is when she gave me THE LOOK. The ahhhh I see, a welfare scammer look and said under her breath, and far less cheerily, 'not too sick to be out shopping'. So I decided it was time to drop the C bomb. 'Well, I have cancer and I'm on chemo so it's good days and bad'. Her response? Oh I know someone who had that. Yes, genius, we all know someone who had THAT. Now, less of your judgement and more shelf stacking please. I still hope she'll never know what THAT is like.

This round has been tough for some reason, nothing big, no surprises, just some long lingering fatigue that I can't seem to shake. I haven't managed to accomplish much in my good week. I did get to catch up with some friends a couple of times which, in itself, can make a good week. I also, in an event unrelated to cancer, ran into the ER doctor who first tested me and told me it was looking like I had cancer. He had a good grope of my neck there and then, with no evidence of Pacman, and told me I looked 'remarkably healthy' for having had 5 months of chemo. One of the best compliments I could have had and yet one I wish I never had reason to receive.

The new PICC line is giving me some trouble, coupled with blood thinning injections my arm is looking a little worse for wear with all the bruising and bleeding. I remember however that I was quite unsure of the first one for the first couple of weeks too and grew to love it for the pain and anxiety it saved me from on chemo days, so lets hope his left arm counterpart (that my friends have named 'chewey', apparently due to the fact that it sounds like 'tubey' which begs the question why not just call it tubey?) grows equally in my affections. My right clotted arm, aka giant smurf arm, is also on the mend. The swelling is subsiding slowly but surely, the pain and aching is all but gone and it's looking a much healthier colour in comparison to the corpse-like colour it was a couple of weeks ago. I'm hoping that after a couple of months of blood thinner injections I will be done and that will be the end of my experience with 'extensive thrombosis'.

Speaking (typing) of blood thinner injections, these babies are not too bad at all. I am not bothered in the slightest by the self injecting which caused me so much anguish a few short months ago when they first suggested my blood cell boosting growth factor shots. The only problem is some fairly extensive stomach bruising at the injection sites. I've taken to living in dresses so that I don't have a waistband pressing on the site which seems to be helping, but lets just say a bikini on holidays will not be an option unless I want poor Nick to have to answer some pretty serious questions. Then again, with an extra 35lbs since my stomach last saw the light of day, it's probably a holiday more suited to a one piece either way! Not sure how I'm going to cope with the dress situation when the weather turns cold but it will work itself out like everything else. I'm sure someone somewhere manufactures and sells some sort of woolly moo-moo that will keep me and my newly large and blue belly warm in a non-bruising fashion.

What DOES feel good is the fact that I'm down to a countdown in days as opposed to months or weeks... 4 days until my 11th chemo, 17 days until my LAST CHEMO (I managed to convince them to give me the last one a day early so I have a better chance of being well enough to attend my friends hen party on the 29th by lying ....ha! And to think those crazy doctors are laughing at me thinking I don't understand the seriousness of my condition.... pppfffftt!) and lastly but by no means least, 25 days until I jet off on holidays to spend my final chemo recovery in the sun. I've said it before and I'll say it again...just keep swimming, just keep swimming. Eventually, I'll get there.

Day of hell 2 eve

Anyone remember the dread I had before the last time I had chemo and PICC inserted on the same day? I think this is worse. I have that night before an exam butterflies feeling where I forget for a second and then remember and it hits me as if I'm hearing for the first time that tomorrow, again, I will have to have my arm cut and a 45cm tube inserted in my veins straight to my heart and then have 4 hours of chemo. Oh but this time I get the added fun of injecting myself in the stomach beforehand in an attempt to heal my right 'giant smurf' arm which is still huge and blue from last week's blood clot fiasco.

Chemo is the ultimate endurance test. Every week, two weeks, three weeks whatever, you have to walk into a hospital knowing that you feel perfectly well and by the time you leave you'll feel like death for 4 days. Sick, hot, sore, tired, out of breath and achey. Then you feel well and it's back in again. Round and round we go. For six months. That time feels a lot longer than it sounds. As well as the ultimate endurance test it is the ultimate lesson in appreciating your time. I love the times I feel well. Love the mundane tasks I am able to do. Love the feeling of waking up, hopping in the shower and heading out for the day (even if I do have to draw on a face and attach someone else's hair to my head first). Anywhere. Just not the couch for daytime tv and pills. Soon, every day will be like that and I'm sure, like before, I will be bored of those mundane tasks and will spend my days in search of something more exciting. Now though I will know that something extraordinary happening doesn't necessarily mean GOOD extraordinary and sometimes boring is just fine.

So as you can tell from my moan I am not looking forward to chemo #10 and my new PICC line tomorrow, nor is my arm improved much. I'm hopeful that by the time I recover this weekend my arm will be better, not fully but enough that my fingers work! By then, I will also be just over 3 weeks from what I hope will be my final encounter with Mr. Chemo. That hateful bastard. Then again, he is theoretically saving my life so I guess I shouldn't be too hard on him. Tough love. He loves me really.

Something good did come out of my 3 PICC free days - I've been happily soaking in bubble baths - something you can't do (comfortably) with an opening to you heart just dangling out of your arm (even after having it there for 3 months, the concept is no less bizarre to me so I can imagine how that sounds to the rest of you). So now, it's off to enjoy my last bath before my new tubular buddy gets inserted tomorrow and I'm banned from my bubbly tubs of heaven for another month until they take it out BEFORE I LEAVE FOR GREECE :) Yup, still determined that that's happening. I'll drive there if I have to. I'd say walk but with the pace I'm held to these days I have a feeling it would take me a year. If it comes to walking I'd probably give it a miss. Otherwise, I'm as good as there. Bald and smiling.

The day of the clot(s)

So yesterday was a fun day. I woke up and my right arm was twice the size of my left arm, numb and blue. Not pretty. I obviously immediately realised there was some sort of blood issue and drove myself quicksmart to the hospital. Ultrasound showed 'extensive thrombosis' throughout the vein that my PICC line was in. Basically, clots had formed around the PICC line from my shoulder to lower arm and into other nearby veins. Not a pretty sight.

Out came the PICC line and, after 7 hours being tested and prodded and poked, I walked out with another, yes ANOTHER prescription. This time it's daily blood thinner injections for 1-3months and then warfarin if 3 months of injections hasn't done the job. Oh joy.

Unfortunately, my uber-crap veins are still not good enough for even a blood draw after their 2 months of chemo beating before the PICC was put in and so there's no hope of me getting through my last 3 rounds without a PICC and so, on Tuesday, before my 10th hit, I will need to have another PICC inserted into my other arm. The injections should prevent the same thing from happening to this one.

So, in advice to anyone who has or will ever have a PICC line, the second it starts to feel heavy or just 'wrong' get it pulled. My arm felt weird for at least a week before this but I paid no attention as I had no specific symptoms to explain to a doctor. Very much like leaving my diagnosis for months and months before it eventually showed a physical symptom. Sometimes you just know your body, you know something's wrong. Make them keep looking until they figure out what it is.

Nobody's really saying what effect this new problem is going to have on my holiday (yes, this is still all I'm worried about). Hopefully the shots will mean that a flight to Greece which is obviously not long haul won't be a problem. The main thing is that there will be no treatment delay which is my biggest fear at the moment. I need these last 3 on time or my beloved holiday can't happen. The doctor who removed the PICC line laughed when I said this 'Oh I've heard about you, give me the last dose quickly I'm outta here on a plane'. Apparently most people wouldn't be crazy enough to go on holiday a week after their 12th chemo session? Personally I can't think of a better time. Except maybe 5 weeks after their last chemo session which what I will also do. And 4 months after their last chemo session and probably a couple of times in between.

After this, life will be a holiday.

Hair update

You'd be surprised how many people ask about this. Hair. Along with 'when can you start drinking again'. I'm not as surprised by the hair one as I am about people's fascination with me not drinking. I never really drank a whole lot before so it doesn't bother me. Also, do 5 months of chemo and see if YOU feel like pouring alcohol into your already sore mouth and queasy stomach. No thanks.

Anyway, all body hair completely gone. Very few random lower leg stragglers but aside from that it's bald as a baby. Actually, fairly sure I had MORE body hair than this when I was a baby (thanks Dad and your 'amazing hair covered human' genes). Eyelashes - I'm hanging onto my last ten or so for a couple of months now. Can't decide would I look more weird or less weird without them at this stage. Eyeliner helps make me look less like a snake. Eyebrows- need to be drawn on daily to make the few remaining hairs look dark and eyebrowlike. Head - I'd say I have 10% of my hair in patches, 0% in other patches. I am now sporting a very fashionable and stylish receding hairline look with some remaining fluff at the top and back of my head. Not a good look. For weeks now I've been torn between the idea of shaving off the remaining fuzz or just leaving it. I've gone with just leaving it. Not sure why. Maybe just so it can stick out and make me look insane. Who knows. But poor Nick. Wow. For those of you who are not fortunate enough to see it daily, here's my noggin post 9 chemo sessions over almost 5 months. A big smile both distracts from, and adds to, the hilarity of the baldness I find....

So there ya go, all you hair wonderers - that's what it's like.

Alcohol wonderers - no I still don't drink more than an odd glass of wine every week or so with dinner, I'm sure I could drink more if I wanted to but I don't and who knows if I ever will again!

Halfway through another good week. 4 days from another bad week. 6 days from chemo #10. 4 weeks and 6 days from magic #12. Ok I'll stop now, I'm even boring myself with these continual countdowns.

The mystery of the missing blog posts

I've just come on the laptop (as opposed to iphone) for the first time in a week and see that the two blog posts I've done on the phone since chemo #9 are not here....mysterious blog thief? Weird.

Anyway, there was nothing too exciting. If I remember correctly I wrote a post about old friends. This stems from the fact that during my last chemo session, a girl I was in school with and haven't seen in 10 years popped in with a card from her and some equally long lost school friends. Amazing to know they've been thinking of me and that she took the time to call into my treatment room! Unfortunately I was beyond out of it on drugs at the time and am fairly sure I made very little sense and was probably dribbling at the time, nonetheless, it was very much appreciated.

I also wrote a post about bouncing back. I seem to be bouncing back faster now, and feeling better on the good weeks than I was for the first 3 months of treatment (can't really believe I'm in my 5th month now. Time, she flies). I can't figure out why. I have a few theories.
1. Chemo is no longer working, I'm becoming immune. This one is far from likely. As far as I know. Can you get immune to chemo??!!!
2. I was feeling so awful because of my disease and not solely the chemo. So, now that my disease is gone (see how I've decided that it's gone with absolutely no evidence? That's positive thinking) I'm generally feeling better and healthier.
3. I've gotten so used to feeling completely utterly awful that when I feel 50% I think its 100% because I've forgotten what actual 100% feels like.
4. I've learned how to manage the symptoms so well that the worst of the side effects no longer get to that 'out of control' stage that makes me miserable.

Whatever the reason, I'm not complaining.

There have been some other developments symptom-wise. Firstly, I have almost lost feeling in the last 2 fingers in my left hand. I thought it was coming back last week but it has plateaued and I don't think it's ever coming back. Not until I'm far out of chemo anyway. I have also officially entered 'chemo induced menopause'. This, I'm hoping is not permanent. For the majority of people doing my treatment at my age, they will go back to normal a few months out of chemo.

Otherwise, I'm doing awesome. There are full hours where I don't even think about cancer, chemo, tumors, hair, nausea, hospitals. How crazy is it that I've obviously gotten so used to this life that it doesn't even register with me as noteworthy anymore?! My 2 weekly schedule has become one day chemo and indescribable horribleness, two days of minimal horribleness with extreme tiredness, 10 days almost normality with moderate tiredness. I live as normal the vast majority of the time which I would have never expected. Especially not after so many months of chemo, whatever about for the first month or so. I figured I would have taken such a beating that at this point I'd be bed bound! Nope, still kicking. Maybe just a little slower than before.

That said, I'm very much tired of it now. It's going on a really really really really long time. I want to get this PICC line taken from my arm. I want to be able to stop organising my life in 2 week chunks. I want to stop going to the hospital. I REALLY want my hair, eyebrows and eyelashes back. This day 5 weeks will, all going well, be my last chemo. Tomorrow 6 weeks, all going well, I'll be hopping on a plane to Greece. This time cannot possibly pass fast enough. Sigh.

Chemo #9

Blood drawn, I've been stabbed, sterilised, weighed and groped. Having a cup of tea and it's chemo time!

Good news:

1.I've put on no more weight (just the 30lbs then, that's GREAT- sarcastic interlude to the good news section)

2. mr head haematologist finished a conversation with 'you'll be fine'- a rare moment of hopeful sentiment which many people who have had a lot of interaction with medical professionals is on a par with spotting a pink toucan in the hospital costa coffee in terms of rareness.

3. The cause of my dead 2 fingers is unlikely to be neuropathy and my chemo doses can continue as usual

4. They can feel no lumps at all in my neck - no enlarged lymph nodes

5. There is no bad news, even rarer than the encouraging doc and the pink toucan combined.

4 hours from now I'll be 9 down and home for recovery. Today also makes 6 weeks to my final chemo - magic number 12.

New reality?

Recently I was asked by someone about to embark on the fun journey of chemotherapy how I coped with the 'new reality' I was faced with. How I could prevent myself from becoming resentful of friends and family moving on with the life that I had had pre-cancer that I wish I still had now. How I could process the thoughts of death, cancer, sickness, my appearance. How I felt about the fact that my body had betrayed me meaning I would never 'trust' it again. How I felt about having the naivety of my youth stripped away leaving only a harsher perception of a cruel world.

The answer, I just do.

The truth is, and this is something I have tried quite strongly to portray in this blog (sometimes, unsucessfully I'm sure) is that much of day to day life carries on as normal, with a few added unpleasantries! I chose not to work during treatments but many carry on working on the good days and from home on the bad days. Not working has been the biggest change to my life. This is obviously not a 100% bad change! Then there are the days that I'm in hospital or feeling crap after chemo. These will always be there, and are not fun. You adjust though. You learn now to cope with the effects and learn to deal with it in the way you would deal with a terrible 3 day hangover (albeit without the benefit of having had the fun night out!). Aside from this, over the last 4 months I've had a great time of lazing about, lunches, shopping trips, airplanes, dinners, dog walks. I've spent more time with my Mother and Sister than the 5 years previously combined, I spend each morning having a lie in with my snoring puppy until one of us wakes the other for brekkie. In a lot of ways it has been really nice!

I don't resent my friends. When I can join them I do, when I can't I can't but that was always the case. I've always been up for an adventure and will be again after this ordeal is over. Sometimes the best thing about an adventure is waiting for it to happen. I am also confident that, having experienced a life threatening condition, these adventures will be all the more exciting. If my friends can join me they will, if they can't they won't. Whats to resent? I don't feel like I've missed out on much of anything so far.

Dealing with the prospect of dying is going to have a positive impact on my future. Most people, including me, my age have the 'there's always tomorrow/next year/retirement' attitude. I no longer have this. If there's one lesson it's that so many people, of which I or you may become one, don't get tomorrow. Existing now to live in the future is foolish. One day I was thinking about this and asked myself, if I died this year, what would I regret having not done in my life? Next year, I will start doing these things one by one and constantly amending that list. I don't for a second believe that if I were to die in 5 years I would have nothing on my list, that's impossible. But, at least I'll know that I did what I could with the time I had rather than putting it off until 'tomorrow'.

My appearance? Meh. It'll be fine. Yes I look like uncle fester now, short fat and bald, but that won't last. Only poor Nick has to deal with it. Even I barely see it without make up and wigs. I'll put 'become good looking' on next years list. Easy.

My body DID betray me. It attacked itself. I am fighting back though, hard. Will I ever feel 100% confident that I can trust it again? No. In fact I'm sure that I'll be over analysing every twinge for as long as I live. But, what better way to stop me from becoming complacent again? Little reminders not to slip back into the rut of life.

Cruel, harsh world? No. The reach out I've had from people I had long written off in my life, the help from total strangers who will take the time to make me feel better, the way on the good days I can look around and think WOW I really want to be here for a really long time.... no, the world looks better to me than it ever did.

The new reality is going to be so much better than the old. I just need to keep fighting and hope I get the chance to live in it.

Mind over matter and peripheral neuropathy

Last Tuesday I had chemo number 8. Every hit I've had has been on a Tuesday (every 2 weeks) and every time it's Saturday before I'm up and about again. When I got the news that I in fact need 4 more hits (sounds so much more dramatic than 'treatments' or even 'chemos'...also, they feel more like hits than treatments) meaning 2 months, I decided I was going to have to reduce the number of 'bad days' I was having in every 2 week cycle. So, I decided to plan a full day of activities for the Friday and drag myself out of the slump one day earlier. Not only did I carry out the full day's activities which involved a hospital trip, shopping, lunch and entertaining for dinner until 1am (that's the latest I've stayed up in 6 months!!) but I did it all again yesterday staying up until TWO AM! Once again, mind over matter.

Number 8 seems to have passed relatively easy. I do have a new issue in the form of peripheral neuropathy. Well, I've always gotten slight neuropathy, but this week I completely lost all feeling in 2 fingers on my left hand. Remarkably annoying. It felt like they were asleep for 2 days and no matter how much I tried to shake them out the feeling just didn't return. Thankfully, they're back and have been tingling for 2 more days which should be the end of that. For now. I'll need to have a chat with them next time, I may need a dose alteration. Can't have me losing fingers.

I have a great week of activities planned so I just need to get through the next two days worth of bone pain inducing shots (oh how happy I was to be finished with those and how unhappy I am that I am still stabbing myself in the stomach with them on a daily basis) and I'll be free as a bird until number 9. Number 9 will be 3/4 way through. It's a little heartbreaking that I thought I was 3/4 way through a month ago but I'm not one to dwell.

My focus is on staying well enough to finish number 12 on the scheduled day (September 25th which is marked on my calender IN PEN which last time I checked can't be erased) so I have a chance of being able to go on my much needed holiday.

Some blog related news - this week we hit 50,000 views, added Fiji, Ukraine and the Philippines to the list of viewer locations and I seem to have attracted a reader who has decided I am a fake, do not in fact have cancer at all and am using this life threatening illness along with 'photo-shopped' pictures to build sympathy and publicity for myself in order to boost sales of my future book that I didn't know I was going to write. Oh how I wish you were right crazy lady. That would certainly make my life and it's associated problems much easier.

So, 50 days until my last fake treatment, 55 days until I'm awake after my last fake treatment, 59 days until my holiday. Let the countdown begin :)

Beaten down

I've just arrived at the hospital for chemo #8 and I've just had a flashback to my first day. I arrived with all the apprehension, nervousness, curiosity and, in some ways, even excitement that came along with starting something as foreign and so widely known, but little understood by someone who has never had the misfortune to be touched by it, as chemotherapy. I was in the lift on the way up to the appointment with one other woman. She had hair, thin hair, a large bag full of magazines and water and was wearing a black track suit and big slip on uggs. She looked tired. Today I would have easily spotted her as a chemo patient. Not then though. She happened to be put beside me and later that day I got talking to her. She asked if this was my first one. She could see it in me. I asked her how many she'd had - this is number 8 she said rolling her eyes in a soft, defeated voice. Resignation to the fact that this was happening, she had to do it and having any feelings on the subject was futile. That's how I feel right now. This is happening. I'm here. Might as well shut up and get on with it.

The nurses could barely look at me today. They knew it was supposed to be my last day and that now it's not. They're amazing. I don't know how you could do that job and smile so consistently. Then again I don't know how I can do this and smile so consistently. Well, when I'm with other people, consistent smiling at home on my own would just be creepy.

The head consultant came to see me this morning also. He said he was worried I was 'stewing' all weekend and wanted to talk me down to calmness again. He did a stellar job, I'm calm. 5 more chemos and I'm done. We'll worry about after that after that.

So I'm waiting for my blood results to come back so they can make sure my body is up to another hit. It is. What's weird is that my mind is too. By Saturday I'll be good as new and one step closer. 2/3 done.

I always win :)

Ok, panic, crying and feeling like I'm already dead OVER. I have regrouped. I have had a great weekend, thanks once again to Nick who talked me out of depression first thing Saturday morning and made sure I carried on as normal by allowing me to do 4 loads of laundry, the grocery shopping as well as the cooking and cleaning up of all meals over the weekend. Isn't he just swell?? It's just want I needed though, life as usual. He refuses to let me wallow. Wallowing is such a slippery slope. He also painted the bathroom that I'd been nagging him for months about (we had only moved to our newly renovated and nowhere near finished/furnished house shortly before I was diagnosed and a lot has gotten left behind in the unfortunate re-prioritisation of our lives). Now, I should point out that it's less of the airy, bright, flowery bathroom I had wanted and more 'bat-cave' since he decided to take artistic control and painted the entire room, ceiling and all, dark grey but at least it's done. I'll repaint it pink while he's at work on one of my good weeks.

Anyway, regardless of my bathroom woes, which are for once not gastro-intestinal, we had a lovely day out today with friends, family, doggies and sushi. What more could I want? No cancer I suppose, that'd be nice. But I'll get there. I don't think I would have enjoyed today nearly as much if I didn't have Friday to compare it to. There's some truth in the cliche of experiencing the lows to appreciate the highs. Cancer does nothing if it doesn't give perspective.

2 more months and I'll be a couple of days away from heading off on my lovely holiday. I can do 2 more months. I have no choice. But knowing that in those 8 weeks there will be 4 good weeks as well as 4 bad weeks makes it easier. Even the bad weeks will be good from now on, I'll make it happen. This week my oldest and bestest buddy is visiting from much lovelier lands and will be hanging out with me on the couch until I emerge from the fog and we can have a weekend of fun. It was supposed to be my 'end of treatment celebration' but instead, since I was fighting for more chemo when they told me I didn't need it, and now I'm getting just that - MORE F*****N CHEMO, I'm going to call it my 'I always get my way' celebration. Let that be a lesson to you Pacman, I always win.

Pacman lives...for now

My thoughts are a LITTLE more collected today. This is the way I see it.

Who cares about 2 more months chemo, the PICC, the injections the pain, sickness, tiredness, hospitals blah blah blah. I've done 4 months, I can do 2 more. It won't be nice but I can handle it.

However, the prognosis is different. I have just taken a giant leap out of the 'most likely to be cured' box and into the 'least likely to be cured' box. The ramifications of that are too big to consider, I'm going to have to try to forget about it. Forgetting that after the next few months you're likely to require further, stronger chemo and a bone marrow transplant is tough.  Forgetting that you're much more likely to die than previously considered is tougher. Forgetting that a scary percentage of people who have been in my exact situation have not made it is impossible. Not to be too negative or anything....

I'm sorting out a second opinion on whether or not I should be continuing this line of treatment at all if it's not working (which is still up for debate seeing as they are arguing between the terms 'partial response, complete response and near-complete response to therapy). I also might push for another scan before making decisions. It's been 2 months since the last one so things could have changed a lot in that time. Finally, I'll be organising a mass drive-by egging of the doctors who, despite there being disagreement, chose to tell me that I was in remission, needed less treatment and was on my way to a cure. Let me know if you'd like to participate. They deserve more than an egging in my opinion but lucky for them I'm a pacifist. That or Nick has talked me down.

I am definitely not ready to die yet (nor am I ready to stop being dramatic it would seem) and there's still a fair amount of fight in me. You're strong, pacman. I'm stronger though (hope he doesn't know how scared I am, the fighting talk is a lot less convincing if you're crying). As someone told me today, statistics are useless when I'm involved (you know who you are - thank you, that statement really made me smile!) and I'm planning on really blowing them out of the water this time.

Now, back to my puppy kisses. I'm lucky really.....see?

First big setback

Today I went to the hospital for what I thought was going to be my end of treatment appointment. It turns out it was my 'oops, sorry, you need 6 months of chemo after all' appointment. Due to a disagreement/oversight/ cock up on my scan 6 weeks ago, the head guy is not sure 4 months is enough and wants me to do a full 6 months of chemo. I was geared up to have my last chemo in 4 days. To have no more injections, have my PICC line removed and have a decent covering of hair by christmas.

Instead, I have 5 more chemos, 2 more months of injections and PICC line, and, and this is by far the worst part, I am no longer one of those pretty much guaranteed to be cured people . Having an 'unclean' scan after 2 months is significantly worse prognosis-wise than a 'clean' scan. This feels worse than actually being diagnosed. I have literally no words. Except why oh why can I not be normal??

My first last

I love that I have started my 'last time' for treatment related horrible-ness. I just injected myself in the stomach for the last time. Farewell you sharp, pain inducing little bastards. You will not be missed