Perspective and empathy

Just home from work after my first post-chemo day back. It was an eye opening day for two reasons.

Firstly, how petty, irrelevant and unimportant are the same everyday issues that two weeks ago would have concerned me. I was never one to be stressed, but always concerned. I can't help but look at these same things now with a kind of sadness at how they ever used to bother me. Regret that I spent the last 6 years (my relatively short working life) worrying about something that, without your health, means nothing. It strikes me that for so many of us, our priorities are way out of whack. At least 5 of our 7 days a week are spent working, one recovering from the 5 days work, and one being enjoyed. I think there's a lesson in this. I also know however, that once I'm better I will probably start working harder than ever before in order to catch up on the time I've wasted on the couch. Maybe I need to take action to ensure that I don't have this option. Like booking my next travel stint!

Secondly, it instantly struck me how much of a setback this illness was going to be work-wise. How much it already has and is going to take away from everything I've spent the last 6 years working up to. I finally felt like I was getting somewhere, now I feel like I've been knocked back a few years. This is gutting. It's been a fight to get to where I was, an every day battle, literally. I'm not sure I'll have it in me to do the battle again when this is over. This may be a blessing in disguise, a chance to step back and really look at where I am heading. It is however the first time I felt that this illness has won, even in some small way.

On my arrival home, feeling not-so-happy, I found that a package had been delivered for me. Among other items, it contained a book, one the greatest ever written on the subject of human struggle. This was thoughtful, the inscription in the book however was incredible. It needs to be said that I don't know the sender very well, I met him only a few times before circumstances meant he was no longer directly involved in my life. He has however faced more than his share of problems in his similarly short life and this has given him the ability to write incredibly strength-inspiring words. His struggles have given him the gift of such empathy, I can only hope mine will do the same for me. Once again, my resolve falters, someone boosts me back up. Thank you for your thoughtful, inspiring and impeccably-timed gift!

Sanctimonious "I have seen the light"/ "poor me and my thwarted career plans" spiel over, I am taking requests for hair styles I can cut into my hair before the shaving. I have had: mullet, step, mohawk and platinum blonde. I have had to reject the platinum blonde (I think this alone will make all my hair fall out, I'll do it in a wig for ya instead!) but all others will be fulfilled. Anyone else with requests needs to get them in asap - I think it'll be buzz cut time by next week at the rate my hair (and eyelashes - they keep falling out and getting stuck in my eye- grrrr) is coming out.  Requests on a postcard to the usual address.

Dinner-a-la-Nick is served, this lucky, spoiled and nausea-free lady is off to tuck in :)

Small victories

I feel like I climbed Everest yesterday (although I still plan to climb ACTUAL Everest someday. Base camp 1 counts as climbing Everest yeah?! good, yeah I plan to climb Everest. ). I ate breakfast, a snack, I had a 3 hour tea and chats date (thanks for coming over, you really perked me up), I walked the dog, I went to my parents for dinner, came home and watched a movie and had a perfect nights sleep. I'm amazed at how that,totally non-special day, can seem like the best day ever. I think it means I am out if the woods for this chemo dose. Woohoo!!

I have also decided what is by far the best thing about cancer. It is definitely this horrible disease's ability to bring out the best in people. This doesn't just mean the people who are with me every day, taking care of me like I'm a child, pushing me when I need to be pushed, nursing me when I need to be nursed. It extends to people I barely know or have never even met. Here are two examples :

Example one : yesterday I blogged that I was worried about having passed on my pre-cancerous white blood cells to some poor unfortunate blood recipient. I asked that if anyone knew anything about this could they please get in touch. Nobody knew, but plenty tried to find out and called/ texted me with their findings. One in particular, a girl I knew in school and have merely bumped into a maximum of twice in ten years since then, wrote a long text with info,contacts, phone numbers etc. She had taken the time and researched ways I could find out and put my mind at ease. That's amazing.

Example two: did anyone see the comment on an earlier blog post from a lady called Paula in the UK? In 2010, when Nick and I drove to Mongolia in our beloved ambulance (weird sentence to anyone who doesn't know we did that!) we met a couple en route in a supermarket in Turkmenistan. We stayed with them up to the finish line 3-4 weeks later.  This lady was his mother. We never met her, but knowing she was worried about her son's safety (all our parents were up the walls, understandably!), we gave her a link to our gps tracker so she could make sure we continued to move safely in places with no phone coverage (most places!). To take the time to write such a personal, heartfelt, genuine and lovely message to someone you've never met is amazing. Paula, I hope I meet you some day. Steve, you were right, your Mum is awesome.

In terms of chemo effects, I have aches and pains all over and tingling in my hands. Nothing that a good shake cant fix. I had however, the unfortunate experience yesterday of being headbutted in the mouth by an agitated beagle. His rock hard head burst my lip open and loosened my front tooth. Wonder if chemo prevents clotting as it seemed to bleed forever. It serves me right for trying to once again display his 'robo-dog' moves for the enjoyment of others. Lots of disinfectant mouthwash and it should be OK. My head is also super itchy. Either the hair is on the way out or I have picked up head lice. Don't know which is worse actually!

Off now to take said head butting beagle to the dog park for a play. Life goes on during chemo, much more than I was expecting.

Good days and better days

Just before I was officially diagnosed (but after I knew what I had) a very good friend of mine (who has always been a source of strength, motivation and focus - he's a pain in the ass and I love him for it!) told me that, yes, its shit, but I need to stay strong, focused and get through it. He told me there would be good days and better days. I loved this, no mention of bad days. Every day is a day closer to recovery and so how could they be bad? Today is a better day.

The sun is shining, I slept well, I had breakfast, the mental fog which has made it so difficult to think over the last few days has lifted and I feel almost myself. I have a morning tea date and an early dinner date and I feel like it's almost a normal Saturday. I keep saying (writing? saying? writing, definitely writing) almost as there are still the niggling reminders - my legs ache like I have the flu, the skin on my face and hands is dry, flakey and cracked and chemo constipation is alive and well (too much info again? apologies) but still, I feel like I'm alive again. One day chemo, one day throwing up, two days sleepy, back to normal. If this is my pattern I'm delighted, I always have been pretty jammy haven't I?! Besides the rare blood cancer obviously.

More good news, cirque was apparently very disappointing. My parents took our tickets and went. I know they can't say it was amazing given the circumstances but overall I'm glad I didn't try to drag myself out.

Found out something else interesting last night. As someone who has blood cancer, I will never again be allowed to donate blood. This leads me to two thoughts - one, please please please go and donate blood. In that chemo room there are countless people receiving blood. I will more than likely need blood at some point along this journey to keep me alive. The more people who donate, the better the chances of survival are for someone like me. Two, I have donated blood once in my life. Fairly pathetic I know, but between recurrent anaemia due to my refusal  to eat red meat (haven't you heard? red meat gives you cancer, oh the irony) and yellow fever travel vaccinations I was disqualified for quite a number of years. I'm worried about the person who received this blood. Does this mean they too are destined to life as a blood cancer patient at some point? Have I, while trying to do a good deed, actually passed on my dodgy white blood cells just for them to mutate in some other poor innocent's body? If someone has any expertise on this subject please let me know as I'm weirdly bothered by it!

Ups and Downs and Downs and Downs

I seem to have entirely beaten the nausea. HOORRRAAAAYYY!! That still doesn't mean I can eat. Imagine a 5 course meal, with pitchers of beer and at the end of it someone comes out with a loaf of bread and tells you to eat it dry - that's my reaction to food of any kind. I don't feel sick, I just really really really don't want to eat it. I'm trying to nibble melba toast and crackers just to get something down. Something tells me I'm going to have a great hatred for crackers by Christmas.

Yesterday afternoon, my temperature shot up. Now, to a normal person this isn't a cause for concern, probably a cold. To a chemo person this is panic stations. I sat obsessively taking my temperature while shivering for about 3 hours, watching it climb 0.1 degree at a time. I have, over the last month or so, had the misfortune of experiencing what is called Pel-Ebstein fever. It is a rarely seen phenomenon in Hodgkins lymphoma sufferers which causes your temperature to rise for a week or so, then fall for a week or so for no apparent reason. (As if the chances of me getting Lymphoma at all weren't low enough, I have to have a horrible rare symptom of it too, thanks lady luck. You seriously owe me after this. I'm talking Euromillions). I have had my week off and so it was about time for it to start again. Much scarier now though when you have been warned and warned and warned of infection and the risk even a common cold can pose. I took a couple of ibuprofen (naughty naughty, I'm not supposed to self medicate) and it came down. Back up again through the night meaning not much sleep was had. Seems to be OK now though (usually fires up around 5pm so I have one more hour). Ibuprofen at the ready.

Today started with a doctor at the fertility clinic I did my testing at last week leaving me this message 'Hi Sonya (first mistake), this is Dr. Dumbass at the gobshite clinic. If you could give me a call back urgently please, the blood tests you did last week have shown some problems'. Now, calling up someone who has cancer, has just done chemo 1, is worried about her fertility as a result and leaving this message is unreal. To make it worse, he wouldn't take my return call for 2 hours. Eventually I got him. What was it going to be? I was already infertile anyway? My fertility was so low that chemo was going to finish me off? I was already pregnant? (It occurred to me that nobody did a pregnancy test on me before starting chemo!)....No, he wanted to know when I had had hepatitis A. I told him I have never had hepatitis A. He said that's not possible as I had antibodies. I told him I had had the Hep A and Hep B vaccination before travelling a few years ago and could that be it? Ohhhh yes, that's it then, that's fine. OK, bye. I'm going to egg his office next time I'm there.


I have, with much sadness, decided I'm not up to cirque du soleil tonight. Instead, I will be sitting in the same spot on the couch I've been on since Tuesday. The exhaustion, which could be the chemo, the lack of food, the general depression due to the whole situation, or most likely a combination of all of the above, is debilitating. It's like a fog in your brain, you're too tired to form sentences let alone move. My Mam came over today to take me out for a drive (I really am 27 years old, I promise. I do however have cancer and happen to enjoy being driven around an unusual amount for someone my age, Nick can vouch for this. Born to have a chauffeur I think. This is where the Euromillions will come in handy.). We were in the car a half hour before I was asleep and being shipped back to the couch. It's a sad day when you realise you cant even be driven in a car without being exhausted.

In other chemo-related news, my hair hurts. I know that sounds crazy but it does. Like it has been tied in too tight a ponytail for a day and then let down (ladies you will understand, gents think of it like your hair is being pulled creating a kind of ache). I assume this means its going to happen soon,  egg-ness. I'm ready for it. Just praying my neck goes down in size soon. If there's one thing guaranteed to make a bald chick look worse it's if her neck is wider than her head. Now there's a wish I never thought I'd be wishing - that my neck shrinks before I'm bald. Just goes to show, you never know whats coming for you and how your priorities change as a result.

Another day

13 hours sleep and a total lack of food for 24 hours coupled with many-a-antisickness tablet seems to have done the trick on the nausea front, although I thought the same thing at this time yesterday so don't want to count my chickens.

The weirdest thing about today is that my neck hurts. Not pacman, but his right side counterpart. This is the first time anything has hurt since that first A+E day a month and a half ago (wow, just hope the next 6 months goes equally fast). I like to think this pain is being caused by cancer cells dissolving. Die little cancer cells! Either that or I slept on it funny. Naaah, lets go with dying cancer cells. I could do with a heartening boost.

I didn't go to work again today. I'm going to try to get out at some point though and get some air. Just a little walk around. So far not loving life as a chemo patient I have to admit. I find myself getting jealous of people on tv - THEY obviously don't feel this rubbish. The scariest part is I know it's getting worse before it gets better. I think the sitting around feeling sick is getting to me, I need to get my mind back in the zone. Have cirque du soleil tomorrow night - bought the tickets in December, I'm going!! The feeling sorry for myself vicious cycle stops now.

Nausea is....

Here goes again, another emotion/sensation I believed I have felt before now but haven't. After my cocky post this morning Mr.C (Chemo, not cancer, cancer is pacman, try to keep up) dealt me an almighty blow in the form of debilitating nausea. All day I have been lying perfectly still trying to hold down water, crackers, my pills. Now you're all probably thinking 'yeah, thats what all nausea is like' but no. I've done my fair share of binge drinking, I've traveled to some pretty filthy places, I've had salmonella among other food poisoning experiences. This is not the same. I think its because this one comes with the added mental images of the drips going into your veins, the syringes, the pills, the blood the smells of the alcohol swabs, the hand sanitiser, the latex gloves, the taste of the saline, of the marzipan mouthwash to prevent oral thrush, the red liquid which last night leaked (or exploded) from everywhere it can leak from... you cant get it out of your head. Once again, this needs to be a case of mind over matter but I'm struggling. Even writing this is turning my stomach. I have been trying to do the online supermarket shopping since 945am (one less thing for nick to think about). It's now 750pm. I open the page, close it again, lie still sipping water and popping pills for an hour. Then I start again. That's nausea.

The anti-sickness tablets are probably curbing it, it would probably be worse without them but at the moment I hate them. They were given to me with such promise that CINV (Chemotherapy induced nausea and vomiting - see, I'm a pro! And i didn't even study) is a thing of the past. That the drugs to counteract it are so foolproof that it gets brushed over and not elaborated on in the list of side effects. Not so Mr. Oncologist, not so. More weight needs to be given to this in the pre-chemo chats. I hope its just me, I hope not everyone feels like this. I also hope it passes and I'm not facing 6 months of it non-stop. It's very difficult to maintain any sort of normal life when you're trying not to throw up.

Speaking of normal life, listen to this for something you don't hear every day... Yesterday during chemo I sat for a brief period beside a 67 year old lady who is battling breast cancer (I wonder at what point of cancer do you start saying 'battling' cancer rather than 'has' cancer. It's like at what age do we start saying someone 'had a fall' instead of 'fell'?!). She told me the most important thing I could do was to shave off all my pubic hair. 'Otherwise it falls out all over the house and its just disgusting'.  Hmmmm. SOMEONE GET THIS LADY SOME CLOTHES. On that note I'll leave you all and get back to my staring at the wall (tv makes me nauseous).

Sona 1, Chemo 0

Well, shockingly enough, since the last post (which was done in the five minutes of nausea relief post vomit) I have been fine. A little queasy feeling but nowhere near the same level. Looks like the anti-sickness drugs they gave me do work IF I manage to keep them down long enough to take effect. I had a very unexpected and restful nights sleep....JOY!!

I'm awake now and about to do my morning shower routine, with trepidation. At this second I don't feel sick, nothing hurts, I'm a little sleepy but I've never been one of those people whose eyes pop open and they're up like a spring in the mornings (you know who you are) so that's normal. I just feel a little off, like the beginnings of a flu. Kind of fuzzy (although that could be the not shaving for 2 weeks). We all know though (from hangovers or otherwise) that feeling of 'Oooo I think I got away with it, I'll just stand up now and oh...no....urgh....back to bed'. I'm literally scared to move in case it comes back!!

In my chemo fear I had decided to take this whole week off work. Its 840am on Wednesday and I'm wishing I was going to work. That however would be pure Sona silliness and so I'm going to put on my new comfies (thanks lob), go downstairs, get some cheerios, cover myself in my new blankie (thanks oof), watch daytime tv and pop an ungodly amount of pills. Maybe I'll try work tomorrow. For now though, I'm going to lie as still as possible in case that scoreboard title I have potentially jinxed myself with does a little switcharoo.

LIARS!!

"Patients receiving the ABVD chemotherapy protocol will experience mild nausea and no vomiting"..... They lied. In the spirit of too much information, the vomit, like the pee, is bright red. On the upside, throwing up helps the NOT MILD nausea. Looks like my 'make yourself sick and you'll feel much better' alcohol training will come in handy over the next 6 months. On the downside, I have officially been relegated to the en-suite side of the bed until the end of treatment. I wasn't even out of the bathroom and Nick was switching the contents of the bedside tables (his - gadgets, mine- a pharmacy). The sight of me climbing across the bed at the speed of light has obviously made him fearful for his gadgets. I hate this side. This means war Pacman.

One down, Eleven to go

Once again, amazed by all the support and messages, dont know how you all even remember what's happening in my crazy world each day but every message makes me smile even if I cant respond, it is so so so appreciated. Thank you.

So, one down. It was a long day. For those of you interested in what it might be like, I'll outline it, the rest of you skip to the end!

Arrived around 815 this morning, line placed into my hand as the veins in my arms are already too bad after all the stabbing over the last 4 weeks. Didn't like this so hoping next time it can go in my arm. Wasn't sore, just cumbersome, I was conscious of moving my hand all day. More blood taken (dont know how I have any left) and my white cell count was analysed and deemed fit for poisoning. Quick couselling session (these are the side effects again, how do you feel, any questions) and back into the chemo room to settle into my recliner for the day. 

They start with an anti-nausea drip, then a hydro-cortisone, then a steroid (as if my face isn't puffy enough from the tumours and general unfortunate genes and eating habits, steroids will be part of my treatment for the next 6 months), bit more saline, some glucose and then the heavy stuff. The first two drugs (A and B)can be injected into my line from the worlds largest syringes. The third one (V) from a drip which took 20 minutes then the final one (D) in a drip which took 2-3 hours. Whatever happened, whatever is in those drugs, I had to pee every 5 minutes. (Too much info? Sorry, I promised an honest blog, warts and all, thats what you're going to get!) Everyone was laughing at me wheeling all my gear in and out of the toilet. I also invariably either pulled my line out each time causing it to fill with blood or broke my machine. Made a total spectacle of myself. These toilet trips were made all the more traumatic by the fact that the first drug (A) turns pee a bright red colour. I was warned, still freaked me out though. For those of you curious as to what a chemo room looks like here's a pic....all of us sitting around with our drips having a chat. Some people knit, some read, some sleep, some chat but overall its a busy, lively, upbeat and in no way depressing place which surprised me. I could pass these people in the street and never know they were ill.

By 330pm I was on my way home armed with the worlds largest prescription list. Picked it up on the way - all drugs to deal with effects of other drugs. Over the next week, in addition to the chemo I will be ingesting this, not actually as many as I'd thought:

So how do I feel now? Wrecked. Kind of like I've been up early (ryanair early) for a flight and traveled all day. You know that tired, slightly nauseous feeling like you dont know what time it is and you want a bed? That's me. The effects will worsen through the night I'm told. Tomorrow will be a good way to judge what the next 2 weeks will be like.

Ok, I did it, I got the blog done...... zzzzzzzzzzzz

Chemo eve

Twas the night before chemo and all round the house.... Ok I dont know the rest, something about a mouse. I wish it was Christmas, it would be over if it were Christmas.

Today was another hospital, poke, prod day. Started with the ECG - remove all the clothes from your upper body and lie down there while I cover your entire chest in this gel and then rub this ultrasound thing all over you. In between boob, under boob, side boob, let me know if I'm hurting you. Are you kidding? After some of the other tests this is like a boob massage :) All quick and painless and revealed a perfectly functioning ticker.

Had an email (??!!) from my liaison nurse to tell me I am hepatitis and HIV free, always nice to know.

Fertility tests came next (so they have something to compare it to at the end to measure the effect chemo has had on my fertility). Since they couldn't talk to me about egg freezing as I don't have that option, the counsellor decided to spend the hour on my feelings. How do I feel about starting chemo (how do you think I feel, couldn't think of a better way to spend a Tuesday), how would I feel if I were left infertile (I think the answers to these questions are more than obvious) , do I think I'm in denial about my disease (nope, just dont want to keep talking about it), am I trying to be strong for others (nope, I'm just not one to panic),  do I need to cry (if this continues, yes, I think I'll cry) do I think Nick will leave me as a result of my cancer (WHAT? If I thought that I don't think I'd like him very much now would I?), am I scared he'd leave leave me if I were left infertile (well NOW I am!!). She was very nice, I just don't think I'm one to be counselled. I'm sure some people would find it very helpful, it's just not for me.

So how DO I feel about starting chemo tomorrow? Emmmmm, undecided. I'm trying not to think about it. The more I think the more horrible it seems. The best thing to do is try to forget the poison, the body devastation, and alter my mindset to think of it as medicine. Poisoning medicine. NO. JUST MEDICINE. It'll be fine. It'll be fine. It'll be fine.

Chemo positives: My neck will go back to it's normal size. I will stop coughing. The night fevers will stop. I will lose the fear of the unknown and finally know how it feels. I will be one step closer to the end. OK that's all I got. It's enough though right? LETS GO!!

Dread is....

You know the Sunday night feeling? The one when you remembered you didn't have your homework done and were going to have to face school the next day and the fun of the weekend was over for another whole week. Or the night before an exam. Or even now at this age, just knowing you have a particularly tough week ahead. The Sunday night dread.  I thought I had experienced dread, Sunday night or otherwise. I hadn't. This is dread. Dreading poison being pumped through my veins causing armageddon on my entire body. Dreading the fact that I will spend the next 6 months marinading in a stew of toxic waste designed to kill human cells. Knowing it's coming and that there's no way out of it is a feeling incomparable to anything I've felt before.

I cooked dinner for friends this evening ( well, its me, cooked means I bought a cooked chicken and reheated it with some veg and potatoes). Naturally, the fact that I would be poisoned this week came up in conversation. 'Like a good night out' he said. On the back of that hilariously observant comparison, we're going to try to start a trend and we need your help - 'how was the head after Saturday night?' ....' Awww I was totally Chemo'd, got sick all day'. Spread it round, you heard it here first.

Something tells me that in my 27 years, I have only experienced the PG version of a whole range of emotions. Cancer will give me the chance to really feel them. I can now say I have felt dread. Real dread. Sunday nights will be a breeze 6 months from now. There's one more thing to add to the 'upsides of cancer' list. Maybe it will help you all feel a little better about your Sunday night dread too :)

PS Nick's feeling a little sore that nobody has clicked the facebook 'like' buttons that he spent an hour setting up, do your good deed for the day and click on one. You'll make a little geek very happy. 

Makeover

Inspired in some way I think by my awesome pacman cake yesterday, Nick has given the blog this pacman makeover. Amazing the things that can make you grin from ear to ear like a child at Christmas!!! He still won't read it, but this is his way of supporting it. I could not be any more lucky. Today is my last day of normality. Tomorrow is a hospital day and Tuesday is C-day 1 of 12. I think the reality of what the next 6 months are going to feel like is starting to hit me. I'm still in bed. That's 17 hours in bed. Cancer makes that almost acceptable. That mindset however just makes you lazy. I'm getting up now and taking Louie for a walk. You can't be lazy when there's a bored beagle puppy loose in your new house.

Pre-chemo afternoon tea

Today started badly, I'm worried about Nick. I'm worried about the effect this cancer is having on him. He wont read this blog. My over-analysing female brain is wondering why. His simple man brain is saying its because he knows everything and hates reading. Sometimes I think it would be so much easier having a simple man brain. I cant stop thinking about how unfair this whole situation is on him. Not what he signed up for at age 27. Nurse/cleaner/chef/chauffeur to cancer patient. He is amazing at making sure I know that he doesn't see it this way.

I also had a mini melt down drying my hair this morning. I always hated my hair. Stupid big curls. I now love my hair. I feel so stupid for hating it. If I was given the choice now I would not make any changes to my curls, or my greys which have started to come through. Since the PET scan results (showing I had cancer of some sort) I also cant bring myself to pluck my eyebrows or shave my legs (lucky Nick eh?). I have no idea why. So, to snap myself out of it I spent an hour teaching myself how to tie a scarf around my head. I definitely think I'll be able to rock the scarf look. Panic over.

When it comes to friends, I am lucky. Mine are the best in the world. Fact. Not only am I lucky enough to have people who I met through different avenues (jobs, college, trips abroad etc. ) over the last 27 years, but I have a group of school friends who have been all together since we were about 13 - my Mawts. Today they came to my house, en masse, for a pre-chemo afternoon tea (I cant drink and I cant stay awake past 8pm so this is about as crazy as my social calender gets these days).

They came armed not only with all the food and drinks needed for the occasion, but presents. Things to make me comfortable, things to keep me entertained, things to make me feel better, things to make me look better and things to make me smile. They're amazing. I am definitely gonna be the coolest kid in the oncology ward. One in particular (who was actually the first friend I told way back on day 1 of testing and who has been incredible in terms of all support since that point) made me a cake. Look at this and tell me this is not the most awesome mars bar rice krispie cake you've ever seen..... A PACMAN CAKE!!!

Mawts, you're deadly, thank you for today. How can I not smile through this with all of you around me.

Another interesting/ thought provoking event from today happened while picking up last minute tea party provisions. There was a charity bag packer who was determined to explain the ins and outs of the condition of the person she was collecting for. A guy who had gone blind at age 22 and needed money for a radical treatment not covered by insurance. At the end of her, very sad, story of this young man she said ' so you see, whatever stupid little problems you think you may have are nothing in comparison to what he's going through'. Now this is a ridiculous thing to say to anybody. You have no idea what problems someone has. Someone may have been diagnosed with blood cancer 4 days earlier. However, I left thinking yeah, you're right, he's worse off than me. There's always someone worse off. Remembering that means 'why me' can never set in.

Finally, you'll be glad to know that Louie is back to himself. Our garden is minus one more shrub. Good to have you back Lucifer :)

Wiggin it

Right, I am now officially a wig expert. As hair loss is one of the biggest side effects of all chemo-therapies, I think it is worth a mention or even a whole blog post! Not all chemos cause hair loss. Most cause some degree of hair thinning. Also all people react differently. I'm told I have a 90% chance of losing 50% or more of my hair. My eyebrows and eyelashes will also go (Eeeek!) as well as all other body hair (so long gilette venus my old friend, I will not miss YOU). A very good friend, on hearing my diagnosis, pointed out that I have spent thousands on laser hair removal. Stupid move, would have come out anyway. Hilarious, I love her.

Once chemo is over, my hair will regrow. Very fine at first, they call it chemo hair. This needs to be shaved off 3-4 more times and my own hair will return. I will not be allowed dye it for 6 months. It will take 12-18 months to get chin length hair. At this point I will be 30 years old. Wowzers. Should have enjoyed my hair more.

At this moment, I feel OK about the hair loss. When it comes to the day it starts coming out, or the day to shave my head I will not feel OK about the hair loss. Simple as that.

So my Mam, my Sis and I went to the wig place. A strange sort of environment, wigs everywhere, alopecia and chemotherapy patients. Overall a nice vibe though weirdly enough. We were taken upstairs by what turned out to be the owner of the shop, a woman in her 30's who had been treated for cancer for 9 years and had lost her hair and regrown it 3 times. Her father owned the shop before she was diagnosed with her first malignancy. Weeeeeird eh?

So, wig choices are: synthetic (don't need styling, cheaper, cant be worn past shoulder length as they get tangled and matted when rubbing against clothes) or real human hair (need to be washed and styled, can be any length, lasts 2 years). So i decided to try both. The worst part about this was when she put all my hair under the net - it showed what I'll look like bald. As expected, my head looks like a pea on an orange with my neck at its current size. Then came the fun part!

Settled on real hair - couldn't handle the shorter ones for some reason, they were unbelievably realistic but just too much of a change from my own hair which is long and curly. At the moment when I put it on I look like cousin it, once its styled it'll be just like my own hair. Not sure whether I'm freaked out my having someone else's hair on my head or not. Going to try not to think about it. Also, wondering whose hair this was and why they sold it. She told me all the hair was Asian hair. What kind of life must they have to spend years growing this hair to sell. Made me feel very lucky.

Moral of the story, appreciate your head hair, don't waste money on removing your body hair :)

How do I feel?

Firstly, WOW. Wow wow wow. Thank you all so much for the messages, emails, calls, thoughts and kind wishes. If I sat here til C-Day ( thats what I've decided to call Tuesday for chemo day, I think I miss D-Day, here's to you D-Day) I wouldn't be able to respond to each one. Please know that I read, appreciated, and cried my eyes out through over 100 facebook messages, comments, texts messages and emails this morning alone. You are all amazing.

Everyone keeps asking how it feels, not the physical effects, the psychological effects. I think I tend to be a positive person, I see how situations could be worse, I am grateful for the small mercies. I never took any experience I had for granted. There is purpose in every experience good and bad. I will not deny though that the last month has been a roller coaster.

Last night I cancelled an amazing trip Nick and I were due to go on in 2 weeks. I bought it for him for his birthday. That's depressing. Really depressing. It's like normal life, fun life, has been put on hold and replaced with cancer life. This is a strange feeling, like I'm gone and been replaced by an interim version of me who will finish off 2012 for me. I don't like this feeling. Anyway, I'm not going to dwell on the holiday. Next year, when it is all over, I'm going traveling again. I had always intended to go again but I got stuck in the rut of life. Life is too fragile and unpredictable to do the 'maybe next year' thing. Next year, I'm going.

There are moments of sheer panic. When for a split seconds it hits you, I could die from this. I wont. I know I wont. But people do. However, more recover. When I hit panic I go into the logical mode that so many of you know in me - this has, since day 1, been explained to me as 'the one to get'. The 'nicest cancer' - 90% chance of full recovery in 6 months. After that, 70% chance it wont come back. I like those odds. Panic over.

All along, fear of the unknown has been the biggest stress factor. What could it be, what will the open biopsy feel like and how big will my scar be, what will the bone marrow biopsy feel like (I shudder when I remember!!) , what will my treatment be, what are my chances. Once these things pass I forget them, onto the next. Now it's how will I react to Chemo. Some people carry on a near normal life - continuing to work and just sleeping more. Some people are knocked down instantly. My treatment plan is weird in that its 6 months of chemo - most chemo plans are shorter. The effects of chemo on the body are cumulative, each time a little worse than before. I need to start strong! Once I get going, that fear will be gone and I can go back to the hair loss fear!

I don't feel like I thought I would feel, I don't feel unlucky or hard done by. I feel that 1 in 3 of us are getting cancer, I got mine early when I'm strong enough to fight. I am also in the strong minority of lymphoma sufferers whose cancer caused pain. Without pain I would never have gone to the doctor that day. Without going to the doctor, and without treatment I would now have 5-6 months to live and I wouldn't know it. I also got 'the nice cancer'. I also got it in a country that means my treatment, despite having no insurance, will be 100% free meaning I will not be left with financial burdens at the other end.  None of this is unlucky, its really really lucky. Someone's looking down on me. We're all getting something, some illness, some hardship - nobody's life is plain sailing. If this is all the hardship I get then bring it on, I'll get it out of the way now :)

Last night I had the first full, restful, instant and unassisted nights sleep I've had in 3 weeks. My symptoms seem less. My cough is subsiding, the blockage in my throat feels smaller, my neck and arms move freely. How is this possible? This morning it hit me. This is purely a psychological battle. The chemo will kill the cancer, the rest is in my head. I have a plan, I'm working towards it, I'm calm, the physical signs lessen. Amazing. The mind is a powerful tool and is going to be my best friend or worst enemy. I need to make sure its the former.

Today is wig day (W-Day just doesn't have any ring to it). I will choose something that looks as close as possible to my hair and get it fitted. When/if (face it Sona, its when, its happening) my hair starts coming out I can call them, they'll get it ready for me and even shave my head. Nick is off the hook! They'll style it there and then and thats it, no more ghd for a year....its like I've been given the gift of time!

First though, time for work....thanks again for all the love, you're awesome. xxxx

Cancer = free fillings

There are two lessons in this -

1. If you are about to have chemo GO TO THE DENTIST. I was told my teeth were fine, I mentioned that I was starting chemo next week and ended up with xrays and 2 fillings ('they would have lasted you 10 years but with Chemo they'd be abscessed in a month without fillings'; dentist, 2012).

2. If you would like free dental work, get cancer. On the house filling, best of luck with your treatment and make sure to get checked again at the end of it. Thank you Ms Dentist, I most certainly will be seeing you again in 6 months.

Other teeth/ gum related side effects of chemo apparently include regularly bleeding gums (use a lot of mouthwash as often as possible), mouth ulcers (bonjella, I'll give lysine a go for these too *insert shameless supplement plug here) and very dry mouth (sip water- she's smart this dentist, never would have thought of it. No need for the sarcasm Sona, she's only being nice.)

I have removed Louie's cone of shame, under supervision. He's back to himself already. So far (2 hours) no attempted licking or stitch snatching, he's happy as Larry. Lets see how happy he is when the cone goes back on at bedtime. MOI HA HA HA I'm drunk with power....

Before I go eat my delicious dinner a-la-sister (thanks Nyree!) I just want to, once again, thank everyone for the messages, calls, love, support, help, presents, flowers, cards, prayers, thoughts. It's overwhelming.  What you soon realise when faced with something like this is that it is impossible to be weak when you have so many people holding you up from all sides. Thank you to all my human support beams for keeping me strong :)

Round and round it goes

What if, when, why, how, what if, when, why, how..... They said chemo would cause insomnia but can someone please tell my brain that chemo hasn't started yet? The little mice working the controls in my brain seem to have taken speed, I can't shut down. I'm so tired! Going through the alphabet listing a boys name for each letter then a girls name for each letter helps (got this rather strange idea from the blog of a colorectal cancer survivor!). Until I get to girls letter Q- can never think of one and then it's back to what if, when, why, how. If someone can think of a female name beginning with Q please pass it on, you may just save my life. For the moment I'll continue to skip it.

Some more preparation I have been forgetting- dentist trip pre chemo seems to be an absolute must. Any 'about to happen' opportunistic nasties need to be nipped in the bud before they get the chance to gain advantage on my non immune system. I'll get on the case.

Must raid work for a supplement supply. In a strange crystal ball moment I brought out two new products in February( a month before pacman reared his swollen head) - a fibre capsule and a ginger capsule for nausea. Given that my greatest chemo side effects (bar obvious egg-head look, that coupled with my triple sized neck is going to put humpty dumpty to shame) are going to be gastrointestinal I am left with no choice but to assume I have the power to see the future. I will charge only a modest fee to those who wish to avail of this power.

Enough rambling... Aaron, Benjamin , Carl, Daniel .....

Plan and Organise, Plan and Organise

PFT (Pulmonary function test) went perfect today. I have above average lungs ( ' They didnt need to test that, sure you can see it' said my Mam! all from you Mam, all from you) so they should be fine for chemo. Made an appointment for a wig on Friday, recruited my Mam and Sis to come for support. We'll make a day of it :) Have the heart stress test on Monday morning, the fertility specialist on Monday afternoon to talk through the egg freezing options that I dont have due to the urgency of chemo (seems a little futile no?!) Also, got my appointment for Chemo- 830am next Tuesday.

The news of the Chemo appointment (which I got while walking out the door from work) hit me hard for some reason. I knew it was Tuesday anyway, but the confirmation, with a time and place, made it seem more real. After a brief 'can this really be happening, panic, why me, panic, oh god, panic' spell on the way home I walked through my front door followed closely by two amazing friends, armed with new PJs, slippers, new trakkie bottoms, hoody, choccie and plenty of hand sanitiser to help get me through comfy and happy. We talked cancer, but mostly normal things. Upcoming weddings, upcoming babies, work, holidays, friends. Normal stuff. Just what I needed. I'm so grateful for everyone I have. If I'd have known that all I had to do to get friends home to visit from Oz was get cancer I would have done it years ago :) So far, every wobble I've had to my resolve, every moment of fear, sadness, panic, stress has been met by someone who instantly refocuses me and clears the fog bringing me back to strength. Thanks for the chats tonight guys xxx

In other news my precious furbaby is just back from the vet, armed with the worlds largest cone of shame having had the snip. Seeing him confused, scared and in pain is heartbreaking. Few days to nurse him back to health before I'm the patient myself and he's nursing me like only a loyal puppy can. Look at that sad puppy face. How could I feel sorry for myself looking at that?!!

The events leading to D-Day!

One of the first things people always ask is how did I know, or what tests did they do to find it. I'm going to outline it all below -from my first twinge of pain to D-Day (Diagnosis Day!). Its a long one, ignore this post or at least grap a cuppa first!

After Christmas I began getting a low-grade, non-consistent, definitely bearable pain in my neck. I put it down to a minor car accident last October, a new bed, sleeping funny, whatever. Not serious right? I was also SHATTERED all the time. I would come home from work and sit, not able to move again until bed.

11th March 2012

Woke up with swollen glands. Went to the doctor to get an antibiotic (would have generally ignored this but I looked like a hamster). He sent me straight to A+E and gave me a note for 6 weeks off work. I thought he was crazy. Looking back, he knew. I went to Beacon private to avoid waiting all day. 10 hours, 2 rounds of blood tests, an ultrasound (where I first had the pleasure of meeting Pacman) and a chest x-ray (which showed a mass in my chest) later I paid my €480 bill and left armed with a promise for a call from a consultant in Vincents Public. Have I mentioned I have no health insurance?!

19th March 2012

After an ungodly amount of harassment of the poor secretary I got and arrived for my appointment. More blood tests. Looks like 'some sort of lymphoma'. More tests will confirm, we'll call you. Grrrrr 

21st March 2012 - 11th April 2012

PET/CT scan in Blackrock clinic. I was injected with radioactive material, put in the doughnut machine for 35 mins and sent on my merry way. 2 days later I got the call, the scan had also confirmed there was 'activity' in the other side of my neck and my left armpit. To me this was bad - FOUR areas of tumors?! At this point I decided to call my parents who were travelling in South East Asia and tell them what was happening. I had made the decision to see what it was first before worrying them but this was now serious. They were home on the next flight. 

Node Biopsy -Delighted - what I had been told would be an open biopsy neck incision became a quick and easy needle biopsy. Quick horribleness with the local anesthetic and then I was able to watch the really cool process of needle popping in and out of my neck on the ultrasound screen. Probably not what most people would describe as cool  - the vision of a giant needle with the apparent diameter of a hoover nozzle blasting in and out of their neck - but I like to know whats happening! Even asked, and got, to see the samples at the end!

Bone Marrow Biopsy - NOOOOOO! When they told me I had to do this I freaked out. Didn't sleep for 3 days before it. Ouch. Ouch ouch OUCH. Most uncomfortable thing ever. I think the level of pain is not the problem, its the type of pain, it just feels so wrong to have something in your bones. I shouted and and even kicked the doctor during it. I cried a little bit while I was lying on my back waiting for the 'leaking' to stop afterwards. Please god make it so I never have to do that again. I think I had been a trooper up to this point, but this broke me. Cranky pants, that was me. Exhaustion could have had something to do with it.

D-DAY - 16th April 2012 

Firstly, clean bone marrow -YEAY! No more biopsies, no stage 4 disease, no Leukemia! Matter of fact doctor-  this is the type, the stage, the plan. Awesome. Lets go. I left delighted - weird eh? Nick and I met my Mam and my sister, we bought me 4 scarves for my bald head to come :) Then we met my Dad and surrogate sister Claire for a 'Cancer Early Bird' :) My family are awesome. 

Today 

Now its Chemo prep time. Full virology blood tests done. Heart and lung function tests this week to make sure I can withstand the chemo. Fertility specialist on Monday to discuss egg freezing (hopefully not necessary on this treatment and if it is I have no time anyway, but I need to be ready in case the treatment doesnt work and we need to try something stronger) and once all thats done its time to go. So ready. At the rate I can feel this worsening and growing (I now cough full time, have difficulty swallowing and breathing, cant turn my head, look like I've been fatboothed, have a fever that comes on every night, I sleep 14 hours a day and cant fully raise my left arm!) I'm really ready to get rid of this. Scary to think how bad its gotten in just over a month. Lets go!

Let the games begin!

Yesterday, after a month of testing, I was diagnosed with Nodular Sclerosing Hodgkins Lymphoma. This is an agressive, but treatable form of blood cancer usually found in younger people with an average age of onset of 28. (Ive always been advanced for my age :) ) The presence of 'activity' in more than one location (namely both sides of my neck, my chest and my left armpit) and the absence of other, what they call 'B' symptoms such as drenching night sweats and extreme weight loss, puts me at a stage 2A. Next week I will start a 6 month cycle of chemotherapy called ABVD.

There are 2 reasons why I want to keep the events of the next 6 months and beyond on full view in such an open way. Firstly, during the last month, despite the fact that I was not yet diagnosed, I knew what I had. The doctors knew what I had. My family knew what I had. I spent a large amount of time reading blogs of other lymphoma sufferers and survivors. I cannot describe how helpful I found this. I now feel I owe it to the Lymphoma world to put another one out there in the hope that maybe someday I can help a scared person in the same way.

Secondly, I understand that with this illness comes a responsibility to keep those who care about me informed. The response even this early is overwhelming, I am trying SO hard to keep everyone updated and respond to all calls and messages but I fear this will get harder. This way you can all check in when it suits and see whats happening. Thank you SO much for all the thoughts, prayers and kind words so far.

This is going to be a long and tiring road but I'm ready for it. So long Pacman. Let the games begin :)