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.
Tuesday, July 31, 2012
Sunday, July 29, 2012
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.
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.
Saturday, July 28, 2012
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?
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?
Friday, July 27, 2012
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??
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??
Wednesday, July 25, 2012
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!
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!
Tuesday, July 24, 2012
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.
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.
Thursday, July 19, 2012
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.
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.
Tuesday, July 17, 2012
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.
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.
Monday, July 16, 2012
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.
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.
Friday, July 13, 2012
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
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
Wednesday, July 11, 2012
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 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....
Tuesday, July 10, 2012
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.
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.
Friday, July 6, 2012
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.
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.
Wednesday, July 4, 2012
Confusion
Yoghurt makes me need to throw up but chilli heat wave Doritos going down like a dream... Someone explain this to me...
Tuesday, July 3, 2012
Monday, July 2, 2012
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.....
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.....
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