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...

neupogen and an arm bandage :)

Amazing the difference a few hours can make - grumpy stressed post this morning to be ignored. I think what was really bothering me was the PICC line and the thought of self injecting my white blood cell boosters today. I have just done the injection and, now that one is done, the rest should be infinitely easier. I also am the proud owner of a giant stretchy bandage that covers the picc line sufficiently that it can't move, hurt, twist, swing or repulse me at the sheer sight of it. Now, except at shower times, I am just a person with a sprained elbow in bandage. That's much better than cancer patient with horrible long tube hanging out of her arm.

Went for a quick lunch pre-injection. I was very grumpy to begin with, as can be seen from this mornings 'post of gloom' but, by the end of it, despite one of the all round worst dining experiences we've ever had, I felt much better. My family and Nick are great. Have I said that before???

Now, we wait. Will the neupogen shot incur the same level of unbearable bone pain as the neulasta?? They have the same end effect, I'm just hoping different side effects. Time will tell. I have my zombifying pain killers at the ready.

We have also decided that I need a hair cut. My remaining hairs are sticking out in all directions and have actually gotten quite long. I look a bit crazy. Only Nick has to look at it, but I don't think he's liking what he sees. Time to get the razor out again. I am still amazed at how little I am bothered by the hair loss now. Once it was shaved I barely thought about it again. I wonder will I be saying that when the eyebrows are completely gone. Eyelashes are getting there...

Couple of hours to relax and then, bone pain permitting, out for a birthday BBQ celebration. Hopefully this won't be the last good day of this cycle. COME ON NO BONE PAIN!!!

How should I be feeling?!

Exactly 24 hours since I heard the news that my treatment is a success, I won't be dying (from cancer) this year and, while the clean scan yesterday is all I've wanted since day 1 of this ordeal, I'm not as elated as I thought I would be. Obviously I'm delighted, relieved and thankful but I can't understand why I'm not jumping up and down. I feel ungrateful even saying that. The blog is about honesty however so here goes, don't judge me!!

My theory is that this is still not over. The tube is still in my arm and will be for another 40 days while I receive my last 3 chemos. Today, I have to give myself the first of the injections that last time left me a crying ball, writhing in pain as my poor boyfriend tried to lift what is now, thanks to the steroids, an even heavier version of me into the bath to see did heat help at all. I am still in for 3 more sessions on my good week bad week cycle. (better than 7 more sessions, I know)

The biggest concern I have however is the notion of reducing my treatments. This is a horrible battle in my mind- do I want to do 2 less months of chemo? Obviously, goes without saying. My 6 month schedule was leaving me in this horrible state until October- ending in July is like someone has just given me a get out of jail free card. But, what if I need those extra months to get rid of this for good. This comes back to the art of medicine, nobody really knows for sure. There are 3 options for someone with a clean 2 month scan with my particular type of lymphoma- 2 more months chemo, 2 months chemo and 1 month daily radiation, 4 more months chemo. The riskiest on the 'will it come back' scale obviously being the first one- my one. This is a cancer you want to beat first time. If it returns, I have a 50/50 chance of being cured with a stem cell transplant. I don't like 50/50. But, you have to balance it with potential over treatment this time (by adding radiation or more chemos that I don't need) which would reduce my chances of survival next time. See the dilemma? It would drive you mad thinking about it!!

But, for now I need to not worry about this and instead celebrate my 'medical marvel' status of yesterday. Today I have emerged from the chemo fog and have a great day of fancy lunch, doggie walks and evening BBQ in the wonderful Irish rain to enjoy.

The best part about yesterday was how much it really hammered home how many amazing people there are in my life. Such heartfelt joy from so so many people, some of whom I dont even know. Amazing. Life is good :)

Complete Remission!!!

In the words of the oncologist, I have just won the cancer lottery. My PET/CT shows that I am in complete remission with no evidence of disease 2 months earlier than expected. She just wants to clear it with my head consultant but it looks like I'll have to do a few more 'mop up' chemos to make sure there are no more danger cells lurking that were too small for the scan to pick up and I'll be done at the end of next month.

This means a) obviously, I am responsive to treatment which was the biggest concern b) I am HIGHLY responsive to treatment given how fast it was killed which puts me in the category of people who are least likely to relapse in the future. This is certainly not to say I wont relapse, but I have a good shot at never having pacman rear his ugly yellow head again.

I am torn between feelings of relief, shock, joy, fear.. I don't know. I'm numb. It'll sink in eventually. I think I need a lie down.....

It's not over yet, but the finish line just got moved infinitely closer. Relief is.....

AAAARRRRGGGHHH

The radiologist who signs off the reports is off sick today and so I can't have my scan results. Maybe tomorrow. Bet he's not as sick as I am!!! GRRRR

Significance and relativity

Sometime within the next 5-6 hours I will receive a call to tell me whether my treatment is working or not and, if it is, to what extent. This determines not only the length of my treatment (they can extend it to 8 months if I'm not showing sufficient response) but will also tell how aggressive my disease is and therefore my overall prognosis.

While I sit here, awaiting this call I can't help thinking about utterly insignificant every other set of results I have awaited in my life was in comparison and how for the most part now I can't even remember what they were when I finally received them. And how unimportant was every phone call I anxiously awaited. I am so much more nervous about this than I was even when I awaited my diagnosis and stage. Maybe now because I have a clearer understanding of just what that diagnosis meant for me and how much I really really REALLY want it all to end.

As promised this is a picture of my picc line. This tube will hang from my arm for the rest of my treatment. As it stands this means until October. A delay would mean its there until Christmas. I'm not sure I would have ever been able to understand just how terrible a thought it is to have this hanging out of your arm for months on end.

All this being said, at least in these cases the amount of time is finite. The real fear is that I'll be told it's not working sufficiently and it's time for plan B. I won't go into plan B right now but suffice to say plan B is not pretty.

I'm torn between staying positive and trying not to build up my hopes. Doesn't help that I'm still in chemo fog and so can't get out to take my mind off it. Instead, I'll carry on like other fog days. I'll wrap up my new tubular buddy, have a very uncomfortable luke warm shower, force down some toast and a handful of pills and go to the couch and wait for it to be Saturday so I'll feel almost human again, thus concluding chemo number 5. Horraaay! Another one nearly over. But how many more will there be??? Tune in tonight to find out :)

Scanxiety

Tomorrow is the day I find out if treatment is working. Something tells me this is not going to be a very good nights sleep....

Picc line

My tube is in. It took a weird amount of people and some pretty massive machinery. Feels strange, achey. I hope this is just coz it's new and not the way it's going to feel from now on. I do know I'm going to HATE this in a couple of days though and until it's out of my arm at the END OF SEPTEMBER !! The next 3-4 months just got even longer sounding if that's possible. I have no idea how I'm going to go about life with this dangling out of my arm! I'll post a pic tomorrow when I'm not sitting in such a public place :)

Other bad news, in an attempt to avoid the agonising neulasta bone pain causing injection of last time, I now have daily injections. They start 4 days from now. Better clear a full day in my calendar for number one and two, half a day for 3 and 4 and then see how scared I still am of self-injecting. Fun little experiment.

I'm now sitting in the hospital coffee shop waiting for my blood counts to be reported to them to make sure I'm fit for chemo. 4 hours from now I'll be 5 down. 7 to go.

Edit- 1145am, more bad news. My platelets are too high (???!!) and so I now have to stay on aspirin and am not allowed to fly. There goes my UK trip next weekend. It just gets better and better...

Ultimate dread

I just realised that today is the first day in over a month that has been pain free. And tomorrow, I get chemo AND a whole world of vein/tube/needle horribleness. Cruel cruel disease, a taste of freedom and then bang, right back to pain. Booooo for cancer.

Not feeling too optimistic right now. Id give away Louie for this to be over. Ok that's a lie, but I'd give Nick ;) I wonder will it ever become the norm to induce coma in cancer patients and just wake them up when chemo is finished. I'd happily sign up for a 6 month nap.

There was a little bald girl with a teddy getting scanned with me today. Around 7 years old. Life isn't fair sometimes. She was still smiling though. Maybe us cancer patients are like the Irish football fans, we know the situation is dire, but we keep on singing because life's no fun if you dwell on the negative. Just keep swimming? Naaah, just keep singing, just keep singing....

The weekend before the week

Well, night away was one big expensive disaster. Bad food, bad room, bad bed, bad night. We woke up from a terrible night's sleep at 8am on Saturday morning and looked at eachother - 'should we just go?' Yup. We got up and went home. Disaster. So much for my nice pre-chemo treat! Not to worry. I'll double up on treats next time to make up for it.

Today I'm finding it difficult to think of anything other than the week ahead. Tomorrow I have the PET/CT scan. This in itself is not a worry except that involves a hospital trip, the drinking of 1.5 litres of water before arriving (you wouldn't think this is an issue but believe me it's no easy task at 7am!) and the dreaded 'find a vein' battle. Once all that's done its fine.

Tuesday is another story. The PICC line will be inserted into my vein at 830. This, for those of you who don't know is a tube that is inserted into a vein in my arm and runs, in my veins up close to my heart. 2 tubes then hang permanently from my arm - one to put drugs in, one to take blood out. I am not thrilled about having this hanging out of my arm for the next 4 months but the 'find a vein' games are becoming more stressful than the chemo and so it can't continue. I will have to visit the hospital on my good weeks to get it 'flushed' (run saline through it) and get the bandage changed. I can't get it wet so its 'arm in a bag' showers for me from now on. After this is put in, under local anaesthetic, I have chemo number 5. It's going to be a long, long day.  Then comes the chemo'd days of Wednesday, Thursday, Friday and increasingly, Saturday. Bleugh. Not a nice week to be embarking upon. But after it, I'll be almost halfway to the finish line. Just have to keep going. Scan results on Thursday. 'Never flinch, never weary, never despair' - Winston Churchill. This too, shall pass. Just keep swimming, just keep swimming, just keep swimming....

Romantic night away

So here we are, arrived at our hotel just in time for our dinner reservation. Are we eating? No. Our reservation was changed and we're watching football. Again. And Im bored and blogging. Sometimes I wonder why I put up with him, it's not like he does anything for me ;)

Today I went to work for lunch and stayed for four and a half hours. I miss my work buddies. They made me a lovely hamper of goodies and ordered my most favourite dessert- a maltesers cheesecake (of which I could murder another slice now while I wait for the worlds most delayed dinner). It's a lovely family we have in there and I can't wait til I'm once again a full time member. I even let some of the girls try on my wig, one of which left and went to the hairdresser armed with a picture of herself in the wig to tell them to make her hair look like that! I told her to just shave her head and I'll give her the wig.

In cancer related news, arm pain is about the same as yesterday- present but definitely manageable. I'm concerned as my eyebrows appear to be thinning. Not an immediate concern as I have a hellova lotta eyebrow. I'd definitely be sad to see them go altogether. It's always been scarier to me than head hair loss. On the subject of hair loss- I've lost most of the hair on the rest of my body. I'm reminded of the old lady at my first chemo who advised me to shave off all my pubic hair to "avoid it falling out all over the house". At the time I thought she was a crazy woman who was obviously wandering around her house naked. I have however yet to see one of these hairs falling out. Not in underwear, not in the shower, nowhere. Where are they going? I have visions of them falling out my trouser leg as I walk around the house. Maybe she was onto something this not-so-crazy old lady. Too much info again? Sorry. You're probably getting used to it by now.

Overall today is another very optimistic day- im going to enjoy my last few days before my week of hell, the end of which will mark the end of chemo #5 . Let's do this pacman, I'm totally back on form. You don't stand a chance little yellow fella....

Now, back to the England match

Happiness is

A great, normal, cancer free day! Arm pain is subsiding, now nothing more than a dull ache that I can ignore.(for anyone who is reading this who may have the misfortune of suffering the joys of chemical phlebitis now or in the future- the pain lasted 5 days, could be reduced with OTC medicines and was greatly eased by heat. Always thinking of the cancer contingent among my readers!) I Visited my grandparents, cleaned the house (the cleaner is coming on Saturday and I can't let her see it dirty- true Irish style, clean before the cleaner arrives!) and than a yummy dinner with friends . What I am also noticing, is how much better I feel on my good days than I did before I started chemo. It's midnight and I'm still wide awake and full of energy, never would have happened a few months ago. I can't believe it took me so long realise I was so unwell for the last year or so. It's a great sign to me that the chemos working. PET scan on Monday should provide proof!

Tomorrow Im popping into work to have lunch (fat Friday lunch, who'd have thought it was a health company) with my wonderful family there who I miss every day. Can't wait to see them and moreso can't wait to get back to working with them. Then, Nick and I are heading to a nice hotel for the night . Louie is gone to his granny's until
Saturday, lucky pup, getting spoilt rotten. I can picture him now sitting on the couch being fanned and hand fed sausages while having his belly rubbed. All in all we're a happy pack of campers at the moment :) I get another 3 happy cancer free days too...

Finally, you will all be happy to know, my faithful blog readers that we've added a few new countries to our readership again this week, crazy that this is reaching so far around the world. So, welcome to the 4 people who visited from Serbia, the 19 (!!!!) from Russia and the 3 from China !

Phlebitis

Phlebitis- Inflammation of veins, also the reason why I am considering amputating my own left arm. That fella in 127 hours has NOTHING on me. I'd gladly cut it off using a rusty butter knife if it would end the pain. It will just go away in a week or so, so what painkillers would you like in the meantime? None. I must be mad. I was offered any painkiller I wanted and I said none. Told her I'd just stick it out. No idea why. I think it's the fact that I'm already losing track of what's being pumped into me day and night and to add another one to the mix seems silly. Whether or not it's more silly than sitting around in pain considering self mutilation is debatable. I could always pop a couple of my neulasta bone pain pills and go to sleep for a couple of days I suppose. Naaah. Can't waste a relatively good day asleep. They're too precious. Tomorrow's a new day and I've a dinner date to look forward to! It is funny how much my perception of 'good day' has changed that I now consider a morning in an oncology ward and moderate-severe pain a good day. Ahhhh the life of a cancer patient.....

This is the most exciting thing that's happened in the last 24 hours - I received a photo of Louie wearing devil horns...

Ok who am I kidding, cancer or no cancer, this would always make me happy! Who needs painkillers...

Tuesday lie-in countdowns

This sounds like fun, but it's not. I have been up all night with a weird pain in my left arm. It's an ache, about a 4 on the pain scale. So, my choices, go to the hospital and get them to look at it meaning best case scenario a couple of hours of hanging around the dreaded chemo ward OR lie in bed, pretend it's not happening. On a normal day, in the life of a non cancer patient, a pain in the arm is not something to consider a hospital trip for. This is what I have been reduced to! So here I am, still in bed at 1130am on a Tuesday, researching 'arm pain chemotherapy'. I have such a great life at the moment....

5 more days til my scan. 6 more days til they put the PICC line in my arm. 6 more days til I start my third month of chemo. Everything is one giant countdown these days. The largest countdown obviously being the one to the end of September when chemo will be done and this can hopefully be put behind me. I really think, among other things, poor Nick is getting sick of waking up with tiny hairs from my head in his mouth and all over the bed. I know I am. It's the exact reason Louie has never been allowed on the bed. I'm starting to feel a little hypocritical though, maybe I should sleep on a blanket in the kitchen too?? We can shed there together. Louie would LOVE that. Nick probably would too.

However, it is 1 more day until my ladies day out with my mother and sister for lunch and to spend a very generous voucher I was given by Nick's colleagues, 2 more days til I have a much craved dinner with the girls, 3 more days til Nick and I go to a nice hotel for a night of yummy food and Jacuzzis. 15 more days til we head over to visit his family for a weekend. 19 days until the Euros are over and I can reclaim the TV. Countdowns don't have to be bad when you have cancer.

I'm back!

I can assure you I am in fact alive. The last 4 days was the longest I have gone without blogging since my diagnosis. It has also been the toughest 4 days yet. I have not felt much worse physically than other days, still nauseous, still tired, still counting the seconds until it all ends. This time, the problem was in my mind. It has been a dark few days.

Chemo on Tuesday was tough, it was a long long day. I had a couple of collapsed veins mid-drip meaning we had to start again a couple of times. Back into the hot water trying to make another viable vein (of which I am fast running out) come to the surface. Eventually they got a needle into my knuckle and it held strong for the rest of the poisoning. This was tough, in the knuckle just seems wrong! I don't think that's what did it though, I don't know what caused the mini depression I slipped into. Maybe the thoughts of 4 more months like this, 8 more chemo's. Maybe the effects are starting to hit me harder, no such thing as a full recovery anymore as that concept from round 1 is long gone. Even my good days aren't perfect anymore. I still need that little bit more rest, still get out of breath that little bit faster, still randomly feel nauseous for a few minutes and then there's the never ending hiccups which you wouldn't think would be an issue but are really starting to bug me! Suffice to say (I am completely ashamed to admit this) it entered my head this week that I should stop treatment, that dying would be better. I now see why every other warrior in that ward is on anti-depressants.

BUT, and this is why I waited to write this post, it's over. I am back. In 7 days I get another PET/CT scan. This shows where in my body there are cancerous cells. This will show whether this is working. I know it's working, I can barely feel anything in my neck anymore, even when really trying. The chest and armpit issues disappeared after round 1 so I know they're long gone by now. I am SO looking forward to this scan. It's like an exam I know I studied really really hard for (hmmm, not that I know what that feels like, was always pretty damn lazy) and just KNOW I'm going to ace.

Positives keeping me going this week? I got Louie back from my parents on Friday (they take him for a couple of days over chemo, it's better for him and me, he's pretty demanding!). I've taken him to the park twice this weekend (both times requiring a rest afterwards but they were more than enough to bring a grin to my face). I'm so glad I have him, the therapeutic effects of a lovable pooch should not be underestimated. For those who love dogs I suppose. Probably wouldn't do much for a Cynophobia sufferer, which google has just informed me is a person with an abnormal fear of dogs. Thank you google. Nick is amazing as ever. I also still have all my eyebrows and my remaining head hair (think I'm at about 50% gone) has taken enough of a spurt that it needs a trim in places, this shows me my body is still going. Even with 2 months (can't believe its been 2 months) of chemo behind me I'm still in the game hair-wise. Most of all, I'm one third of the way through this ordeal which will soon be a memory. A story I tell at parties to make people feel guilty for complaining about their bad hair day, or hard day at work! "You think that's bad? Once I got cancer".

Some more requests, once again on the hair front, for photo's of what I now look like sans-wig. Photo here for all you morbidly curious people, those of you ballsy enough to ask and those of you who wish you were! Sexy eh? Have to say, still haven't found the hair loss to be as traumatic as it is for most people. So many people say it was the hardest part of cancer. Maybe it helps that I always hated my hair anyway? I don't know. I do really REALLY want it to come back though. Please note jaw line on left hand side. HORRAY!!

Still shocks me to look in the mirror. That photo really doesn't look the way I look in my head!! Then again, does anyone?

This morning Louie came up to the bedroom for his morning cuddles, same as he does every morning. He goes straight to Nick's side of the bed, knowing there's far better chance of attention over there. As Nick does his good morning greetings, Louie taunts me in his usual Ahahaha Nick prefers me to you way....I even caught this one on camera. Tell me that's not a taunting face! Tongue out an everything. He's lucky I love him. And so is Louie.

I'm sorry to everyone I worried this week, falling off the radar like I did. I'm alive, well and ready to keep fighting. Pacman is feeling MUCH rougher than I am. Thank you all for noticing I was temporarily MIA.