Friday, March 19, 2010
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
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
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
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 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
Wednesday, February 3, 2010
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
Thursday, January 28, 2010
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!