Friday, March 19, 2010

last week

So I have made it through chemo, and have just one more week of radiation left to go.
My Liver function tests are still improving, although I still have NO idea why they went abnormal. I would have put money on it being the chemo at the beginning, but it is so unlikely because they kept getting better while we continued the chemo. So they will probably remain as one of my bodies little mysteries.
I must say that it feels good to have finished chemo. I really didn't like it at all. (Not sure if any one does). The only good thing about chemo was the other patients. I was always with a good group of people and we usually spent a good part of the day laughing through it. What I really hated: the dexamethasone. Its a steroid drug (not like the body builders use) thats main job is to combat the nausea. And it was pretty good at it. But it also made me constantly awake, fairly grumpy, extremely achy on the days I wasn't taking it (they give it to you 4/7 days) and it has turned me into a chipmunk.
I can cope with most of the side effects of most things, but the fact that every time I look into a mirror I see a puffy, chipmunk "dex face" it really reminds me that I have cancer, and that I am a patient. I know it will go away, and in some ways should be grateful that I have put on all the weight that I lost (and maybe a bit more - also from the dex), but I really don't like it, and it is such a small thing.
Next week I have 4 more zaps of radiation and then I am done for a bit. There are a few more bits and bobs to do in a couple of weeks, then follow scans in a couple of months. It takes a few months to work out if the radiation has done its job so thats why we wait for the follow up scan.
In the mean time I have to work out what to do with myself. I get very tired doing even small things at the the moment and the fatigue will take some weeks to months to resolve.
So once more I guess it's a case of take it day by day and see where we end up.

Wednesday, March 3, 2010


I've been a bit slack with the blog updates I know, but its a good thing really.
The liver tests were improved on Monday so we went ahead with chemo. It makes me feel very washed out, and gives me a feeling of a hangover for most of the week, but I can still eat pretty normally, and still no puking (Whoop whoop).
I am on so many drugs, and also ginger drinks, and acupuncture I really have little idea as to what works the best.... so I just take it all!
The other reason I haven't been writing much is because I don't really know what to write on here. Its not a diary, so hopefully theres not too much airy fairy crap, or deepest darkest thoughts (although there really aren't very many of those at all!) so really right now its just the basics. And when things are into a routine, there isn't a lot to say. Tomorrow I am half way through my radiation/chemo. Radiation Treatment 14 out of 28.
The radiation is really very easy. I turn up, lie on the table, get laser measured up, pushed and pulled into the right spot and then zapped (which I can't feel) for about 10 minutes. The hardest thing is trying to get my bladder (yup more bladder talk people) appropriately full. It helps to push the small bowel out of the way so that the bowel gets less radiation. When I have an early morning appointment it means setting an alarm 2 hours earlier to stat drinking fluid. I have to down about 1.5L over 2 hours to get a comfortable fill. On Monday, I got it wrong! It was a chemo day, so they give you lots of intravenous fluids and medicines to encourage you to pee. I got to radiation and was quite uncomfortable. And when I say quite, I actually mean really uncomfortable. I was in a cold sweat, couldn't breathe properly and thought I was going to loose it (literally!). But I made it through and (because they make you measure your pee volumes on a chemo day) I now know (and so will you....) that I have a bladder capacity of approx 950mLs! ouch.
The only other thing that is a bit weird with all the treatments is running into other people. Some of the young children have to have a general anesthetic for their radiation, so I see the anesthetists quite often. There in all my hospital gown glory. I don't really mind it, it just feels weird.
Again we have been so blessed by the support and care from our friends and family. We so appreciate every message, every coffee, every ride to the hospital, every meal and every visit. Rob has gone on a work conference for a few days and Mum is here with me. I'm loving having her here with me and feel quite pampered.
So a little bit nauseated, a bit more tired, but definitely getting there. Bring on the second half!

Tuesday, February 23, 2010

week 2 underway

So I am well into week two of this whole experience, and it's not really anything like I thought it would be.
Monday is my chemotherapy day. I arrive about 7.30, go through about 8 and then get started.
IV fluids, anti nausea drugs, then the chemo.
I always thought you would start puking when the chemo went in. you know, all sitting around puking together. But its actually a delayed thing. Now I have been lucky, no puking at all. Close a few times, but no puking.
Last week the nausea lasted 4-5 days. Just background nausea, like a hangover. I have 5 different drugs I take each day for nausea and I really do feel like a pharmacy.
I have to carry around a lunch box full of drugs with me everywhere I go just incase I need one of the many I have. Given that I know what all the drugs are for, and what all their names are, and how often to take them I have no idea how someone without a medical degree can keep up! I even have to have an application on my iphone to tell me when things are due. I just can't remember what I have taken each day and when!
I've even gone down the alternative medicine pathway for some things. I am giving acupuncture a go, and am wearing acupressure bands during the day. (I must admit, I did make sure there was scientific evidence behind it first - once a geek, always a geek).
Rob went away for the weekend, and I missed him a lot, but it was good for him to have a break and it gave me the opportunity to have some girl time with my Mum and Aunty Roisin. It was a pretty quiet weekend, partly because I managed to become a difficult patient (no surprises there really) and get myself a fever. Fever and chemotherapy don't really go so well. After 24 hours of regular paracetamol and keeping up with fluids it was still there, so then we started antibiotics. Which of course have upset my guts. Great. But at least the fever is gone.
When we turned up for Chemo on Monday I got the added complication that my liver function tests are becoming abnormal. And of course we have no idea why. When you are taking 10 different medications a day, are having chemo, have recently been through 3 anaesthetics, a cycle of IVF and had a fever its anyones guess. So now we are on official liver watch.
I'll get another swag of blood tests done tomorrow so that we have a better idea. Keep taking the antibiotics (caus it seems to have stopped the fever), stop taking the paracetamol and wait and see.
Each day I just have to take one at time at the moment. Try and be the patient and not the doctor and have a little faith (make that a lot) in other people.

Monday, February 15, 2010

Day 2 and going strong

We started. Whoop whoop.
On Valentines Day Rob and I wen tout for a lovely dinner. We were lucky enough to get a table at the French Cafe in Auckland - one of the nicest restaurants in Auckland. We had a fantastic 7 course degustation dinner. (Corn chowder with prawn balls, marinated tuna with asian flavours, seared langoustine with pancetta, goat cheese tart, Snapper with Lobster (for me, Duck for Rob), green apple sorbet and then chocolately heavenly goodness for me and raspberry soufflé for Rob). It was divine and we had a great time. especially as we checked out all the other dinners and tried to work out what their story was. It was a late night and then Monday morning a fairly early start. Suited me though. Less time to lie in bed, and I actually managed to get some sleep.

We got to the Hospital about 8.30 in the morning, and went through to start the chemo just after 9. I get a bed, a drip in my hand and then connected up to a pump. There are 3 beds in the day room, and a bunch of comfy chairs - which get filled up with patients pretty quickly. My first 2 room mates were David (Bladder Cancer) and Toni (ovarian cancer). They asked when I started and when I said it was my first day they stated making the its a new girl comments. They were very sweet and its quite reassuring having the company there from other people in a similar situation.
Before they give you the chemo they give you a bag of fluids IV (into a vein) with some salts and minerals in it. I reacted to one of those (magnesium sulfate) which made me feel as though I had flames coming out of my chest and mouth. It lasted for about 40 minutes while the fluid went in, and then gradually went away. The chemotherapy itself didn't really feel like anything. It made me feel a bit tired, but that was about it. Then more IV fluids and down to radiotherapy for my first treatment. I don't feel anything with the radiotherapy. It's a big room, with green laser beams coming out of the roof so that they can line up your tattoos with the right spots. Once you are all lined up they leave the room and the machine moves around you making whirring and beeping noises. then you're done.
Then back to chemo to finish the IV fluids. I had a couple of visitors which was fabulous and helps to break up the day a little.
We headed over to the main hospital to pick up a(nother) prescription. It's funny how many people you can see while you wait to pick up a script!
By that stage I was starting to feel quite nauseated, and apparently even I have paler shades of pale! who would have thought!
For the rest of the evening I just hung out in bed or on the couch. I didn't vomit, wasn't stuck in the bathroom perched over the toilet worshiping the ceramic gods, I just had waves of nausea. I have quite a few medications that I can take to help, but it still sneaks in there. I managed to get a couple of hours of sleep last night (which was pretty good, because one of the anti nausea medications makes you quite wired) and then back for a quick trip to radiotherapy this morning.
So I have felt better, but I have defiantly felt much worse. We are holding up really well emotionally, and are 2 days down. 4 or 5 more chemo days and 26 more radiotherapy sessions to go.

Thursday, February 11, 2010

3 sleeps

3 sleeps to go now. I’m not sure quite what I think or feel. Relieved? Sort of, because now we are starting to get the treatment going, but not really, because I know what’s coming… I think that being medical in this situation is worse in some ways, you know too much, people don’t explain everything because they assume you know what they will be talking about, and when they do say things I don’t really want to hear it. So maybe I feel anxious. Yup, that I do. We didn’t have the easiest week this week. After surgery I struggled with 4 days of nearly continuous nausea. I was sore, but the pain killers made me nauseated, and even without them I felt sick (and sore) after the anaesthetic. I really wondered if having the operation was the right thing to do. The thought of having the embryo is still so distant. It still has a long way to go. Having the nausea just from the anaesthetic I do feel quite anxious about the chemo.

Today I feel quite a bit better. We had to go to a medical oncology appointment this morning. It is quite surreal sitting in an outpatients clinic and wondering which of the registrars (that you have seen out drinking, or at a med school happy hour) will be charting your chemo. Luckily it was someone who didn’t train in Auckland, so I felt a little relieved.

It was more of the same stuff. You are likely to feel sick, your kidneys may take a hit, you may have decreased sensation in your fingers and toes, you may loose some of your hearing, you wont loose your hair… blah blah blah

In the space of 15 minutes waiting to pick up a prescription we saw about 10 people we knew through work. It was quite nice to see them though.

Again this week we have been blessed by the love and support of our friends and family. Getting to catch up with old friends, receiving gifts from here and from afar, we do feel blessed.

Despite all of the support, especially Rob’s support, I do feel quite alone in all of this. Every appointment we go to I am the youngest person sitting in clinic as a patient. I know that I am the one that is going to have to go through the treatment and it’s pretty scary. I don’t know how I am supposed to feel, or react, but right now I figure most things are pretty normal. There are a lot of support groups, even one called too young to have cancer, but I don’t really think I’m ready for a support group.

I got an awesome photo in the mail today. It’s our embryo, just before it was frozen. Seems crazy to get a photo of it, and for it to mean so much to me. But it does.

Alright, 3 sleeps to go. 2 more days of feeling pretty normal, 2 more days before we get to start treatment, 3 more sleeps.

Monday, February 8, 2010

a little bit of good news

not going to type much today. a bit too sore, and feeling a little bit sick.
I had keyhole surgery yesterday to pickup the IVF induced eggs. And my right ovary seemed to have been doing what it was supposed to. Whoop Whoop, 2 eggs. They took the right ovary out too, so that it can be frozen (although it can't be thawed in New Zealand. We would have to fly to the states or australia to do that)
My lovely anaesthetist (Jo) thought I would be too sore to go home and would have to stay in hospital last night. But I think I was more sore when I spent a day at snow planet failing terribly at snow boarding! So we came home last night. I spent most of the afternoon/evening just lying on the couch. I was too nauseated (and then sick) to do anything else. We might have to get used to me feeling nauseated for the next little bit anyway.
This morning I got the call I really wanted. That one of the eggs had successfully fertilized and was going to be frozen! Yay - the injections paid off and it was the little follicle that could!

Wednesday, February 3, 2010

another day closer

It sure has been a busy couple of days since the weekend.

Monday morning wasn’t one of my better days. I just didn’t want to get out of bed. Didn’t feel sick, wasn’t overly tired, just couldn’t be bothered getting up. Didn’t see the point. I just wanted to stay curled up, and cry a little. It got pretty boring pretty quickly though. By lunch time I had managed to convince myself that I was really not doing myself any good. That I would have a much better day if I got up and had a shower and something to eat. So I did, and I did feel a whole lot better. Good enough to go round to a friends place and have a beautiful dinner. We got to hang out with Rox and Jeff and their two beautiful children. I just love when I get to hold a small baby in my arms, and when it’s one of our best friends baby, and I get to call myself Aunty, I love it even more. Rob took along the video camera, which has been sadly underused over the last few years, and took some great footage of the kids. They grow up so quickly.

Rob went back to work on Tuesday for a bit, and the house was really quiet. Not because he makes a lot of noise when he is here, but just because it is so nice just having him here that when he isn’t I miss him. (pathetic, I know). So I decided to get out of the house, and had a lovely lunch and shopping expedition with Sash. I was running out of clothes that fit me, and had to go buy a belt and some skirts. I have now realized that Cancer does nothing to stop my desire to spend…… hmmmm, clothes….. Pity my shoe size hasn’t changed, or there would be shoes too!

A nurse from the cancer society came out to visit in the morning, and she bought more pamphlets (we have a lot of those now) and she was really cool. I get to go to this thing called look good, feel better. Basically a makeover and goody bag for women with cancer undergoing treatment. Such a great excuse to have a pampering session.

Wednesday was another appointment filled day, and another day dominated by pee.

It started with an 8am ultrasound (that requires a full bladder) to check on the IVF progress. Of course, despite drinking 4 cups of water before 8am, my bladder wasn’t quite full enough, so another cup and a cup of tea to get it all going. The IVF doesn’t look particularly hopeful at this point. I wasn’t as disappointed as I thought I would be however. So far I have made just one follicle (the bit that helps the egg develop) of a reasonable size, despite maximal IVF drugs, where they would normally be hoping for closer to 10. That one little follicle has a lot of pressure on it now. Maybe it will be the little follicle that could…… Time will tell.

After another blood test, we had our medical oncology appointment. The chemo adds about a 10% absolute benefit to the radiation (which is the main part of the treatment), but also adds to all of the radiation side effects. We got a good run down on those: nausea/vomiting/diarrhoea/fatigue/bone marrow suppression/loss of sensation in hands and feet/skin changes (similar to sunburn)/hearing loss/etc etc. I had to keep saying to the doctor (and lets be honest… to myself) well, if you have the side effects at least you are ALIVE. Isn’t that the whole point….

So during this appointment I was drinking a lot of water, so that I would have a full bladder for a simulation CT (to plan the radiotherapy) which was supposed to be at 2.30. Of course, me being me, I had practiced how much I needed to drink, and by when etc, so had it timed perfectly. I should have factored in public hospital delays…. By 3.20 when they did my scan I was pretty ready for a pee.

It’s when I have to undergo scans and procedures that I know I have cancer. The rest of the time I feel pretty good. But when I’m lying in a hospital gown, on a radiotherapy table, going through a CT scan, having radiation tattoo markers put on my body, I know it isn’t some big dream. I know its real, and I’m scared. And damn it I’m allowed to feel scared. I’m allowed to cry. I’m allowed to feel a little bit sorry for myself. And I’m allowed to get over it with a positive attitude, a bit of shopping and a hug and kiss from Rob.

Saturday, January 30, 2010

Just a few ramblings

Our house is back to its quiet little normal state. It's nice. Just Rob and I. (I was going to say "me and rob", but thought my mother would tell me off for improper grammar).
Hospital appointment letters have been the main source of mail for the last few days. It really is quite weird having my name on an appointment letter. I'm quite used to seeing other people walk around with them (hopefully I won't look quite as lost as they will when I go from appointment to appointment, seeing as after 5 years I really should know my way around Auckland Hospital...)
Next week is filling up with places to be and people to see, mostly during the day time, which is lucky, because by the time it gets to 4 or 5 O'Clock I am feeling pretty tired. I'm not sure if that is the muggy weather, the emotional exhaustion, a physical thing, or if it's kinda in my head a bit. What I mean is that up until I got admitted to hospital I was getting up, going to work, coming home, studying the night away, still catching up with friends, and I don't remember feeling this tired.
It's the same with feeling sore. I was feeling sore before the diagnosis, probably more sore than I am now, but now I know why, it bothers me more. Nothing that a few panadol can't fix by the way, but it still bothers me more.
But onto nicer subjects.

We went to Mangawhai yesterday to see some friends. Matt and Rach have an awesome beach house with fabulous views right out over the sea. We all just sat around watching the sea, drinking Moot. What is Moot? Moot is a term given to anything liquid (but not milk) that was coined by a now 18 month toddler. His parents have encouraged the use of the word, so I figure, why not. The sea is Moot, water is Moot, beer is Moot, paddling pool is Moot (Just not milk).
I managed to drive most of the way up to Managwhai, but about 1/2 hour from actually getting there decided that I could no longer put up with Robs sighs and glances at the speedo as I stuck to the speed limit. Time to let him take over.

Last week a friend of Robs mentioned that he might be able to get me a ride in a V8 around Hampton Downs racetrack. So this morning we jumped in the car and headed down. Rob may have got a bit carried away with the thought of racing, and may have broken the speed limit a little, which may have been in front of a speed camera (Read: I took too long getting ready, Rob was trying to get us there on time, and we may have another piece of mail coming from the traffic department in the next week or two).
We watched a few of the warm up laps and before you know it, it was my turn. I got to go in a race with a guy called Mike aka the mexican (although I'm not convinced that he was mexican at all......)
So I'm strapped into my 4 point harness, know where the fire extinguisher is, helmet on, ready to go. We made it to the first corner before there was a red flag. So back to the start again, someone had started a bit too early... So I got the chance for another starting flag and another high speed start. Because it was raining a bit Mike said it wasn't quite as fast as it would normally be. I'm pretty damn sure it was fast enough for me though! As we came up through one of the tight corners into a straight the back wheels spun, then so did we! We came inches (and I don't mean too many of them) from the concrete wall! Apparently Mike had his fingers crossed at that point too! It was exhilarating, and for 15 minutes I totally forgot that I am apparently sick.
Another day, another bit closer to this thing being finished and us being well and happy.

Thursday, January 28, 2010

and so it goes.

I'm only writing this less than 2 weeks after I first was admitted to Hospital, but already Rob and I are forgetting when we spoke to people, when we saw them and what we have said. I guess thats because we have been blessed with so many people offering help, support, bringing flowers and food.
Sean and Jane came up on the Sunday from Wellington, as part of a pre planned trip. And I got my Drama queen crown. Complete with poking stick, "Cath" Bell (rather than call bell), ear plugs (for if other doctors start yapping), note pad, stamp, ID display (so people know I'm the boss) and all sorts of other goodies - including a parcel from mum and dad and baking from Roisin.
It was very cool to be able to sit down and just hang out with them. And then to eat. I have no reason not to eat whatever I like at the moment (apart from the fact I don't really feel like it) so when I do feel like it I can have all the creamy sauces, the deep fried food, rare steak and then dessert!
We are so lucky to have such amazing friends and family. For those who have sent messages and emails that I may not have responded to, I am sorry. I have appreciated every single message and treasure them. I just haven't been able to write reply's to everyone.

One of the hardest things that we have been going through is facing the issue of infertility. The radiotherapy and chemo have a 100% chance of putting me into early menopause, and the radiotherapy itself would mean I would never be able to carry a child. Its tough, especially as we had thought about just getting my exam out of the way and then deciding when to have children. So rather than the few months to years we thought we had to make a decision we had 4 days. 4 days to decide if we were going to try for IVF. It scared me, and still does. No one can tell us 100% what effect the hormones would have on the tumor, although the residing opinion is that it would be safe. We weren't sure if we could handle the extra emotional battle that it might throw at us with even more hormones. Then we have to pray that it works, that they can get the eggs, that they can be fertilised, that they can be frozen, that they can be thawed at some point in the future, and that we can find a surrogate. phew. thats a lot of hoping and finger crossing. But, it came down to a simple equation. If we tried, we might have a chance, if we didn't then that was it for any chance of biological children.
We will still have the option of adoption to consider, and I know a number of very lovely people who have been adopted, we're just not sure it's for us, and thankfully, for once this week, we don't have to make that decision straight away.

So yesterday off we went to the fertility appointment. I didn't realise it was going to be quite as long as it was, which wasn't a problem, apart from having to do a 24 hour urine collection to check my kidney function. Yup, pee in a bottle for 24 hours. (The things us doctors make patients do!) So there we are, half way through seeing all the different people, when I really have to pee. Luckily there was a lab down stairs, so I managed to get another bottle, but they gave me a nearly clear plastic bag to put it in. So there I am, in a building with a whole lot of people I know and have recently worked with, holding a bottle which is half full of pee. We couldn't stop giggling. We had to make a quick dash into the pharmacy to buy a bag so that we could hide it!
It was while we were getting my new drug supply (for IVF) that it was confirmed that treatment will not start until the 15th of Feb. Up until that point in the day we had been doing quite well, but I lost it then. I managed to make it to the car before I started crying. Tears just running down my face, and I couldn't stop them. Another week. It feels like forever.
When I got home I tried to see if I could make any of the appointments privately, caus maybe that would speed things up. No Joy. Some of them just have to be done at the hospital. Can't see the doctors any earlier, can't start the treatment any earlier. we just have to wait.
It was probably the second worst day in the last 2 weeks.
My parents arrived not long after. We weren't expecting them, and it was a bit of a shock. They are just such amazing people. They saw we needed a bit of space, and despite that more than anything they just wanted to be here for us, they left again, and gave us some space. And I know that that is true love. Once we had pulled ourselves together a bit, they came back, and it really was a great relief to see them.
We didn't do much. Just sat on the couch and watched TV. But it was lovely.
I started my IVF injections last night. Strange how it is so easy for me to stick needle in someone else, but when I was faced by this tiny (and I mean TINY) needle I almost couldn't do it. I would never make a good diabetic, or druggie, I just hate needles too much! But I did it, it wasn't too bad, and there aren't that many more to go.

I have just got back from having some more blood tests (I can cope when other people are doing the needling) and from seeing Mum and Dad again. Next week is starting to fill up with more appointments and Rob may even go back to work a bit.

So for today, there isn't much more to add. I think I have filled in the last 2 weeks, and I will try to add a bit more every few days, if there is something to add. Most likely it will just be random rambling thoughts and updates.

week one

We’ll I’ve never really kept a diary, but things are happening pretty quickly at the moment, and lets face it, right now I’m so bored I’d even watch cricket!

I guess things started properly on Tuesday night.

What are you supposed to do when you are in hospital, as the only anaesthetist and you start bleeding, heavily, and you have a patient on the table. Saying oh fuck oh fuck oh fuck was a pretty good place to start.

It’s awesome that there were so many great people to make it a bit easier. Having a Tech with that many years experience is very reassuring, and nurses to wheel me out of there, and a registrar from another department to come and bail me out – I guess I can say fuck I’m lucky, well maybe not luck given the circumstances, but grateful to have so many awesome people around.

It’s kind of a weird thing to be able to ring another doctor in the hospital, to know who they are, and to have them say, just come in, to feel like the whole world is swimming, and then to feel so reassured that they were going to look after me and help sort this whole mess out. I developed a whole new respect for Deborah. Her bedside manner was amazing. I was pretty sure the news wasn’t going to be good, and could see it in peoples faces. Astrid listened to my story and said it sounded reassuring, but then her face when she examined me! May I say fuck?

I never thought that I would have to have a mcfarlane roll inserted, and even though its only a couple of days later there are already things that I can’t really remember happening. Pretty glad that’s one of them.

My first night in 97 was in a 4 bed room, but with only one other patient. It’s weird sleeping in a strange bed, and even weirder waking up without my rob. I love him so much. In fact the thing about all this that is the hardest is seeing what it is doing to him, and knowing that he is so upset, and that right now I am pretty damn well, especially compared to what I might be like with chemo/radiotherapy! But I’m jumping ahead.

I went to theatre on Wednesday Morning. I was holding it together pretty well until I saw Rhada. Then I pretty much lost it. They gave me some midazolam, and I have no idea what I did or said after that. Which I guess is a blessing. I remember feeling so tired when I woke up, struggling to get out of a deep heavy daze. Sneha was looking after me, and was amazed that I could remember her.

The rest of the day is a bit of a haze to me. I do remember going to have a chest xray and being told I would need an MRI. I guess I already knew the news was going to be a bit shitty by that stage. Ange and Kate and Anna and Sasha all came to visit me. It was beautiful. I’m still waiting for someone to bring me my drama queen crown though. After rob went home Sasha just stayed with me. She didn’t even have to say anything, it was just nice to have her there with me.

Valeria came to see me the next morning. You know it can’t be good when the doctor is crying. Poorly differentiated squamous cell carcinoma of the cervix. Despite a normal smear 6 months ago, I now have a 7cm tumor. So another few days wait, another trip to theatre and another consultant telling me the news. It’s too big to operate on so it is going to be chemotherapy and radiotherapy. Ok, so we had a plan. Here I am ready to start the next day, maybe the next Monday. I had no idea we would have to wait 3 weeks after the second trip to theatre to start treatment. 3 weeks! F*&K!