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

You'd never know

Who would think this person is post 4 months of chemo and is bald, eyelash-less and eyebrow-less?? The picture is bad because I took it using the laptop (strangely difficult, especially when you can't work your laptop). I think its important to see though- if you have or get cancer, are having/ ever need to get chemo PANIC NOT! That fears of 'I just don't want to look sick, I don't want people to know I'm sick, I don't want people to stare, I'll have to hide at home, my social life will be over, I won't be recognisable' are unnecessary. Anyone you don't want to know wont know. Just don't write a public blog :)


 


















Edit: It has just been pointed out to me that my 'hair' looks grey in this photo. I assure you it is in fact the fault of the crappy picture and it is in fact a lovely chocolate brown! In order to show this, the photo on the right was taken today also when we visited my grandmother to bring her some birthday treats!

Alter egos

Yesterday I met a good friend for lunch. She was the first person (apart from Nick) that I told what was going on in my month pre-diagnosis and has been the person, outside family, that I have seen the most often during the last 5 months (WOW, I first went to hospital 5 months ago. Time flies when you're having fun!). She always says how good I look when I see her. Yesterday I came armed with a picture of myself, no make up, no wig. Basically, in the state that only poor Nick is subjected to. She couldn't hide the shock from her face. It didn't look like me, she said. And she's right, it didn't. In my head, I look like me. I have big bright eyes, long thick eyelashes, sallow clear skin, thick strong eyebrows, big curly hair. The reality is different. I am unrecognisable.

Over the weekend, half of my right eyebrow came off. Just came off. Not both eyebrows, not the WHOLE eyebrow. Just half of the right eyebrow. So, I was faced with a dilemma that has probably faced most eyebrow pluckers out there - do I do the other one and 'even them out' ??? I decided to go for it. I have now got ultra cool 90's teen eyebrows. I have discovered I have a talent in eyebrow make up though. My right eyelashes are also mostly gone. Left are hanging in. I'm definitely not planning on even-ing THOSE out though. I am facing water retention issues. My hands and wrists look like blowfish. My shoes are too tight. My face is pale and blotchy. I have dark circles under my eyes and, in another new development of the weekend, purple eyelids. So, full blown black eyes. I swear, you want to become a make up pro? Get cancer.

BUT if you see me, you'd think wow, she looks heavier but generally healthy and like herself. Thank god for make up and fake hair.

Similarly, next week I get my last treatment. I am outwardly (and to some extent inwardly) delighted. However, my mind is constant turmoil - will this be enough treatment? will it come back? is it already back? Doesn't help that I got a phone call yesterday asking me to come in on Friday to meet with the big boss haematologist guy, on Friday - a day that he doesn't usually see patients in my hospital, as he had phoned the secretary and asked her to get me in this week. I was due to see him in 2 weeks anyway. Why the urgency? Cancer brain, the brain of the newly hypochondria-affected, is a horrible affliction. Good thing I have alter egos to cover it up so people can't see how crazy I really am.

In spite of all this, this is a good week. I feel good. I'm seeing friends, going out, walking Louie (we had a day of fun yesterday). What I love most is that this will be the last 'good Tuesday'. From now on it will one more 'bad Tuesday' and then just 'Tuesday'. Nice.

chemo number 7

Firstly, one left one left one left one left :) :)

Chemo 7 seems to have been easier on the nausea front, in fact it's been fairly manageable this time. What has kicked my ass is some sort of indigestion/heartburn. Like I REALLY need to burp. Figures, I've spent the last 3 months complaining about the hiccups and burps and then all air movement stops making my life hell. Bring back the burps. I miss the burps. Poor Nick spent about half an hour 'burping' me last night to no avail. I swear I have no idea how he hasn't left me yet.

GREAT news on the fertility front - too much info warning- mother nature has paid a visit to tell me that my reproductive system is still in full function. Given that I only have 1 left (one left, one left, one left!!!) I'm getting hopeful that I have managed to dodge the infertility bullet which would be a fairly massive relief.

On the 'lump' that popped up over the weekend.... I had a new doctor (my doctor is mysteriously gone with no warning, not HUGELY confidence inspiring) who had no idea about my history feel it and she said that it's probably scar tissue. I'm not entirely convinced but I'm going to try to put it out of my mind until I have my post treatment appointment with my head heamatologist in just over 3 weeks. Can you believe in 3 weeks I'll be having my POST TREATMENT APPOINTMENT?? Let's just hope it really is the end of treatment. I could really do with this being over now. I want my life and my body back.

Now, the usual pattern, another day or two of fogginess and by Saturday I'll be at a decent level of functioning. So, I just wait. For the second last time.

Fat fat fat

Weight gain another 2.5kg since last time. Keeps my average at 3lbs a week. This is getting seriously out of hand. How is it even possible? I had a dream last night that Nick came home with a bag of new pairs of leggings and some sort of moo-moo and said 'it's because nothing else fits you anymore'. Next ill need a dialling wand for my phone.

So, herein lies proof that for any of you diagnosed with cancer and you have that 'silver lining' thought of well at least some of this extra weight will fall off- that no, you in fact almost double your body weight in the space of a few months. Losing all this is going to be a harder battle than the cancer was. As if I didn't have enough to do. 3 more weeks til I join that gym. Wonder if I'll even be able to fit through the doors by then.

Anyway, here I sit, waiting for my poison to be wheeled in. Fun times.

Chemo eve and the lump

Right, tomorrow is number 7. The dread has become unbearable. It's getting earlier and earlier in the 'good week' that I think about it. You know that stomach flip when you remember something really important that you've forgotten to do? I get that repeatedly for a good 3 days before chemo now. Not nice, especially in combination with other gastro-intestinal issues.

Yesterday, while doing my usual neck poke-about that I fear is going to become a daily event for me for the rest of my life, I found a lump. Not a new one, one that was huge on diagnosis and had since shrunk to nothing and was now suddenly back again. I went to bed truly scared for the first time in this whole process. The upside of this is that I am so looking forward to seeing the doctor to ask what she thinks of this new lump that the chemo has paled into insignificance.

So, off I go to bed again, after 5 hours of 'progression during treatment' googling. I wasn't expecting the relapse panics to start before I've even finished this line of treatment. I guess I was wrong. Proof that it will never be far from my mind. This time tomorrow I'll only have one left...... I hope.

Grim? Naaaaah

Someone mentioned to me today (in a caring, not a criticising way) that my posts of late have been 'pretty grim' in comparison to my earlier posts leading them to believe I was in a bad way. I was quite surprised by this as I've been feeling better this week than I have in a while and, with the end in sight, have been happily planning my life post cancer. I read back over the last couple of week's posts and have to agree - I've gotten pretty moany! I'm not sure why, as, like I said, I'm doing great!

This week has been more or less symptomless (or asymptomatic if I'm being fancy) and, in exactly 17 days, I will be having MY LAST CHEMO!!! How amazing is that? I even decided on my 'no more chemo' dance while visiting my amazing work family today. It will be a combination of the one legged ass wiggle I used to celebrate my recovery from the painful bone marrow biopsy and the the head spin that happened a couple of times a day to celebrate the fact that I could turn my head all the way around after my first chemo and pacman began his hasty retreat. I will of course upload a video of this hilarious spectacle for all to see.

In the meantime, in apology for my dreary posts of chemo symptom complaints I will include a photo of how hilarious my head now looks. Fluffy and thin. I also have to admit, Nick was right - my nose really is huge. Bald and from above is not my best look. Well, with an extra couple of stone and no hair I'm not sure any look is my best look at the moment. Nonetheless, enjoy.....

Still, for having had 3 months of chemo I'm doing OK hair and eyebrow-wise. If it can just hang on a little bit more I'll be a very happy camper. Few months from now I'll have a nice pixie cut, no flakey skin, fewer excess fat rolls and all my lovely eyelashes back (a very good friend having seen me for the first time in a couple of months last night said 'awwww, your eyelashes, now they look like a normal person's eyelashes'!) . I'll be fighting them off with a stick. Watch out Nick, you better be on your best behaviour. I also will be able to turn my kitchen, bedroom and bathroom back into lovely house instead of cancer house. My kitchen is full of disinfectants, hand sanitisers, a 'hazardous materials' bucket for my empty syringes and my fridge full of full ones. This is my bedside table in it's current state, sexy eh? This is about 1/4 of the drugs I currently possess, most of which i refuse to take. I'm a rebel me.

Anywho, tonight Nick and I are having a nice night in. Got a couple of activities lined up for the weekend. Whatever I do, with chemo on Tuesday, the weekend will go far too fast. Not that I care this time, the faster the better. Let's get number 7 over with so I can get cracking on magic number 8. Now, something tells me someone wants a walk.....

Happy Friday to all! xx

Holidaaaays!

In the spirit of 'seeing past cancer', Nick and I have just booked the celebration holiday. We will be spending 10 days in a fancy (and I mean private infinity pool on your balcony fancy) hotel in the Greek islands over my birthday in October. I'm giddy with excitement! Better bulk buy the suncream for my shiny noggin :) Weather likely to be in the mid 20s I think, not as hot as I'd usually like but still good enough for a swim.

I feel pretty good the last couple of days. I can take 2 more chemos. Easy. Well, not easy, but I'll still do it. Roll on next week and lets get another one out of the way....

I'm back!

Well, kind of back. Same tiredness and 24/7  nausea (that doesn't go away any more, good or bad week doesn't matter, it's always there), same old leg aches from the white blood cell boosting injections (I am however a total pro at injecting myself, so much so that I can't understand why it ever bothered me). My hair, eyelashes and eyebrows have also taken a major hit. I pulled out my whole lock (sideburn, hair in front of my ear) in one go over the weekend. I literally just touched it and it came off. Very funny really. Not sure most people would find that funny but this is what I have been reduced to. PICC line is becoming bearable. Don't get me wrong, I'll be glad to see the back of it when it's gone but I've definitely gotten used to it. It rarely causes discomfort anymore and, aside from always being conscious of pulling it, I would barely know it's there. Amazing what you can get used to.

This day 3 weeks, I will be having my last chemo. 3 weeks is so doable. One chemo this day next week and one 2 weeks later. They say it'll take 3-6 months before I feel 'normal' again. I don't care about feeling normal at this point, I just care about no more chemos. I can't begin to imagine how amazing it's going to feel, this time 3 weeks, when I'm hanging my head over the toilet, knowing that it will be for the last time. Ahhhhhh.

Now that the end is in sight, I am for the first time allowing myself to think past chemo. Past chemo. A time when I have no more chemo. Ahhhhhh. (I can't help but make that noise, at the suggestion of a fellow chemo-er I may also invent a little dance to do every time I remember that I have no more chemo. I may be getting ahead of myself, still 2 more to go). I definitely think a few holidays are in order. Like 2 months of back to back holidays. I also need to spend some time and effort ditching the weight- no easy task I fear when my energy levels are not likely to be great. There's a lot of it to go. I think I may need some sort of trainer. One thing is certain, definitely won't be going back to work for a couple of months. Louie will love all the walks. Nick will love having a housewife. I will love being a lady of leisure. Maybe. We'll see. Maybe I'll find something productive to do with my free time, something not cancer related. I certainly can't see a 'chemo how-to survival guide' being the xmas bestseller anyway. Unfortunately, I find it difficult to think of anything non-cancer related these days.

Things I wish I had

1. Energy. Not 'run a marathon' energy although I wouldn't say no. Simple 'get out of bed' energy would do. I just can't seem to muster it. It's a weird feeling to be lying down and have so many reasons to want to stand up - need to pee, starving, dog needs to go out and you just can't do it. Not even having been lying there for 13 hours.

2. A perfectly functioning gastro-intestinal system. No nausea, no constipation/diarrhea roller coaster, no cramps, hiccups, indigestion, heartburn, burping or, what seem to be the never ending hiccup/burp combos (herps as Nick calls them) which are a huge hiccups followed immediately followed by a large burp whether you've eaten or not.

3. A tongue that didn't hurt. Free from all blisters, raw patches and other equally annoying tongue ailments.

4. Eyelashes. I can't go 5 minutes without something getting in my eye. It really drives you crazy after the first 4 days of it. Come on eyebrows, hang on for just 4 more weeks. 

It's been another relatively rough few days, nausea is definitely lingering longer than it used to. Hopefully tomorrow I will emerge from the fog and, touch wood, have 9 good days before the next hit. Got a celebratory dinner and concert this weekend so I need to wake up. Also I think if I don't start taking Louie for some pretty damn good walks soon I'll never be forgiven.

How simple are these requests? Not too much to ask surely? Be grateful for the little things, one day you wake up and realise they were actually the big things.

Confusion

Yoghurt makes me need to throw up but chilli heat wave Doritos going down like a dream... Someone explain this to me...

#6

Chemo number 6 is done. Im out of it. Zzzzzz. Better blogging tomorrow, promise. 2 left.

ABVD x4

After meeting with the head haematology oncologist guy today (who after his holidays was tanned and smiling, leaving me resenting him just a little), I am happy to reduce my treatment by 2 months. The basic logic was that it's gone, why over treat it which will just cause further toxicity and risk of second malignancies. No thank you. Mr cancer can stay well away, I've had enough of him for a lifetime. Lets hope hes learned his lesson.

I had a lovely weekend away. Very glad I disobeyed doctors orders and headed off anyway. I miss airports and planes and basically just doing things, going places, having a life.

Now, here we are again. The night before chemo. Bleugh. There are very few things I wouldn't give to not have any more of that stuff pumped into me. It will however, thanks to my treatment reduction put me at 3/4 of the way through chemo.

I would have thought the clear scan, the word remission, the fact that my treatment will be 2 months shorter than planned would spur me on. It has had the opposite effect. Even though the end seems so much more achievable, the chemo itself is seeming increasingly arduous. I'm not sure if this is because I know the scan was clean and am having a 'THE CANCER'S GONE LEAVE ME ALONE' moment, or whether it is just the nature of chemo and, as promised, the effects are cumulative. There are definitely no more days where I feel 100%. Even the days where I feel 50% are few and far between. Don't get me wrong, I am not nauseous or in pain all the time. It's just the fatigue. A strange type of fatigue that can not be eased by rest or sleep. Just a general feeling of exhaustion that hangs around no matter how you spend your day. My hair is getting thinner and thinner. My eyebrows and eyelashes really struggling to stay attached. I get nauseous and kind of sweaty just entering the doors of the hospital, even when I know I am not having chemo. My legs ache night and day, not unbearably so, just like I've been standing for 10 hours. Reminds me of my waitressing days. I am however getting used to my tubular arm friend, Mr. PICC line. My new arm sock coupled with some general healing of the wound and dying off of some nerves means I have regained 80% function in my arm. 4 more weeks my little friend. Then you're in the bin.

Just like I get nauseous entering the hospital, I am experiencing negative connotations with lots of other things. Goodfells chicken provencal pizza - Nick ate one one night soon after my first chemo. Just the sight of the box now turns my stomach. Melba toast and jacobs cream crackers will never again cross my lips. I can't use my iPad, earphones (sorry mawts, but Nick is making excellent use of them!) or watch the UK office. Too many chemo sessions spent on them to ever be able to do it again. I stopped rinsing my mouth with salt water as prescribed after my second chemo. I realised it was going to create and aversion and really didn't want to never enjoy the sea again. I am sad to say even my new, very expensive, very comfortable, amazing bed is starting to remind me of chemo. I've considered sleeping in the spare room for the remainder of treatment in a hope to stop this is its tracks. Soup -they bring trolleys of it around at lunchtime in the chemo ward. I also ate a lot of it during the worst days of nausea. Never again. Soup is definitely out. Alcohol - they swab everything with it. The room stinks of it. Lucky I was never a lover of spirits or alcohol in general or I would really be feeling the effects of this one. Hand sanitiser and hospital soap - reminds me of my many mid chemo toilet trips, IV wheeling along behind me beeping. Constantly knocking the needle out, tubes backing up with blood. Red pee. Anything you associate with red pee is never going to be liked again is it?! I'm definitely going to start making a conscious effort to avoid things I like for the next 4-6 weeks (woohoo only 4-6 weeks left!!!) to make sure this list doesn't grow.

Anyway, I say it a lot, I mean it a lot - be glad of whatever you're doing tomorrow that doesn't involve chemo. I wish I were you. Nearly there....nearly there.....

No to incanceration

It's so nice to be away. Cancer can make you feel a little imprisoned. Life becomes completely taken over by appointments, side effects, restrictions, medications, pain, sickness. Everything else eventually, no matter how determined you are that this won't happen, gets put on hold. I call this my 'in-cancer-ation'

This weekend, I'm breaking free. I went to an airport, got on a plane, got off the plane and into a car to my final destination. A place that has nothing but lovely connotations and is far removed from cancer life. I think it might be just the little boost of a break that I need at the moment. A reminder that life as usual can and will resume soon.

The trip (more specifically Lucy) also furnished me with a new arm sock to cover up/hold in place my arch nemesis - my PICC line. I swear it felt like I'd just been shopping and was sporting the latest designer outfit- I was so pleased by how much better it felt. Thank god for nurses and their car boots full of medical goodies. It's the little things that make me happy these days as you can see- my wants and needs really seem to have been stripped down to the bare basics of survival and ability to function! Nothing wrong with that I suppose. A reminder of everything I should have been, and will be again, grateful for.

Now, off to enjoy a yummy meal and a normal Friday night :)

Naughty naughty

My white blood cell count was good yesterday and my platelets back to normal so I'm going to risk the forbidden trip to England. As if that wasnt 'naughty cancer patient' enough I've decided not to take my final injection as prescribed. My counts are high and the bone pain was beginning and I take this to mean its not needed. I may regret this ballsy-ness. Watch this space.

So, this weekend I get a little mini break. Ok so I'll still pop pills, wrap my arm up in a giant sock, sleep 15 hours a day but I'll be doing it all somewhere other than home which makes it better. It'll be just the boost I need to get me through another month.

On the subject of another month, I'm coming to terms with the treatment reduction. Nonetheless I've got myself an appointment to discuss it in person with the head consultant on Monday so I'm hoping he can convince me 100% that it's safe and not paramount to suicide. If he manages this, I have 3 more chemos, the last of which will be july 31st. Very doable. By August 31st I'll be feeling well, 2 months earlier than planned. Nice.

In other news nick has just bought a drum kit and so, after the weekend I will be seeking alternative lodgings. If anyone would like to house a cranky, messy cancer patient feel free to get in touch...

Being in my head this week

This good week is being more or less consumed by my frantic searching for more information regarding stopping chemo early. Also, I'm starting to wonder if there's any such thing as a good week anymore. It's definitely a better week, but I still don't feel well. Very tired, very out of breath and feel like sleeping most of the time. I guess it's just the 2-3 months of chemo catching up on me. When I feel like this I definitely lean towards stopping chemo early. Then my 'what if' head kicks in and I'm right back to googling hodgkins trials to see what the outcomes of 4 months chemo have been. It's becoming an obsession. I have to stop.

Today, I'm going to the hospital to have my beloved (GRRRR) Picc line flushed (cleaned) and bandages changed to help reduce the chance of infection. I'm going to see if I can grill them on the 4 vs 6 debate a bit and get their final recommendation. I'm then going to go with that. I've never studied medicine, I should leave the treatment decisions to those who have.

I had a great night out last night, a catch up with girls from work. They commented on how much better I look now than I did before I was diagnosed. Once again, they've confirmed how sick I really was and was just too blind to see. I'm looking forward to how well I feel a few months out of chemo. Soon, soon. I really really miss 'normal'.

I can't imagine however, that you could go through something like this and then simply slot back into life as usual afterwards. Without sounding dramatic, a cancer diagnosis, maybe more so when so young, changes your perspective. In a way, it takes your innocence. The naivety and invincibility of youth.  You are forced to face your own mortality. The fact that you will not live forever and moreover may not even live 5 more years. This forces your mind to prioritise. Ok, I'm on a time limit here, however long it may be, the end will come. The mentality of 'Ahhh we'll do that when we retire' suddenly seems very foolish. On the other hand, I wasn't unhappy before, I was happy. So what, if anything, should I be changing?

I know one thing for sure, there are number of things I will never again take for granted once I'm back to 'normal' whatever my new normal may be:

• My digestive system
• The ability to roll over in bed without panting afterwards due to exertion
• Nose hair which catches 'drips' before they fall out and hit the table I'm sitting at
• Eyelashes, eyebrows and hair in general
• Having full use of both arms and no tubes hanging off me
• The fact that most days don't involve extended periods of uncontrollable hiccups
• Not having to stick my remaining eyebrow hairs down with vaseline so they don't stick outwards like a crazy aristocratic professor
• Going full days without things getting in my eye
• The ability to function on less than 14 hours sleep
• Having no form of ache or pain for weeks at a time
• Having the ability to plan more than a day in advance, knowing chances are I will be well that day
• Being able to think of something, anything besides cancer, chemo, side effects, prognosis blah blah blah blah
• Having a better paid and more interesting full time job than 'cancer patient'
• Being able to say 'remember that time I had cancer?'

Good news bad news

Good news: mother nature informs me that I am still not infertile (albeit in a manner that is causing much additional pain and irritability) AND neupogen related bone pain seems to be actually stopping at mild-moderate as the leaflet promised which makes it far less suicide inducing than the neulasta of last month.

Bad news: I've been awake for 5 hours and have still not managed to get myself out of bed and in my 5 hours of internet research it seems only Canada and its standard treatment of my type and stage of lymphoma would advocate reducing chemo by 2 months. All other countries would have me finish my 6 months regardless of remission after 2 months. This is due to the nature of blood cancers over solid tumor cancers - the cancerous cells can be invisible in scans and just hang around ready to pop up again next year. We don't want that.

As you can see I'm not managing my 'forget about it and do what the doctors want' strategy too well. I think it's time to pop a few hundred painkillers, have a shower and attempt my first doggie walk of cycle 5 before the painkillers send me back to sleep. Poor Louie is being very neglected these days. He's not used to coming second to the humans. I think he probably hates cancer even more than we do...