Day of hell 2 eve

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

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

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

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

The day of the clot(s)

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

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

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

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

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

After this, life will be a holiday.

Hair update

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

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

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

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

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

The mystery of the missing blog posts

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

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

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

Whatever the reason, I'm not complaining.

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

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

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

Chemo #9

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

Good news:

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

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

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

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

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

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

New reality?

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

The answer, I just do.

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

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

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

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

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

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

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

Mind over matter and peripheral neuropathy

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

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

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

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

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

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

Beaten down

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

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

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

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

I always win :)

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

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

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

Pacman lives...for now

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

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

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

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

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

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

First big setback

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

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

My first last

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

You'd never know

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


 


















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

Alter egos

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

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

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

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

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

chemo number 7

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

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

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

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

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

Fat fat fat

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

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

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

Chemo eve and the lump

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

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

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

Grim? Naaaaah

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

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

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

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

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

Happy Friday to all! xx

Holidaaaays!

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

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

I'm back!

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

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

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

Things I wish I had

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

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

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

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

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

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

Confusion

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

#6

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

ABVD x4

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

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

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

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

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

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

No to incanceration

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

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

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

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

Naughty naughty

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

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

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

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

Being in my head this week

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

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

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

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

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

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

Good news bad news

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

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

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

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 :)