One week down.

My first week of radiation is over and all I can say about it was that it was completely crap (I would have used a much stronger word, but my mother could be reading this at some point). The side effects knocked me around a lot and it felt similar to chemo. I was exhausted, had a headache, nausea, vomiting and dizziness. Add to this that my blood pressure, which has always been normal, has totally bottomed out. I can't stand up without feeling dizzy. It is a very strange feeling to know that your headache is caused by your brain swelling - it creeps me out.

I had treatment on Friday and a nurse came and spoke to me as another nurse was talking to her about me during their gym session that morning. She tried to take my blood pressure, but couldn't get a reading and my pulse was weak. I admitted to her that I had been feeling rubbish all week, but didn't want to admit how bad I had been feeling. I think that when you have gone through chemo - everything else seems tolerable, but this week has been a struggle. She suggested that I go to the emergency department and that they may admit me for a few days. I hate hospitals and I definitely hate sleeping in hospitals, so I wanted to avoid this as much as possible. Luckily there was still a radiation oncologist there and he gave me a long list of drugs to take over the weekend. I have felt better since being on the drugs and have even managed to go out with some friends.

For those of you who know me well, this will come as a surprise, but this week I haven't felt like going out or seeing anybody! I just want to crawl into my bed, go to sleep and wake up in March. I haven't felt like talking to anyone or seeing anyone, which I feel bad about because so many people keep sending me messages of support, but I have been struggling to reply to those. I do love the messages - so keep them coming, but don't hate me for the lack of response.

I think next week will be even harder as it is the week that I am likely to start losing my hair. I haven't put a brush through my hair at all this week, for fear that it will be full of hair when I finish. My scalp has started to feel itchy and irritated, but I am secretly hoping that this is a battle between my hair and the horrid radiation rays trying to evict it from my scalp. I am backing my hair all the way! I absolutely hated being bald. HATED IT!!!!!!!!!!!!!!! I particularly hated it when strangers looked at you, cocked their head to the side and gave you the 'cancer face'. I hate that face. When I see that face I just want to put my fist in the middle of it. No matter how many times people tell me about the fashionable hats this season, or remind me about the gorgeous scarves I have, I would still prefer to have my hair.

So, one week down and I survived. Here's hoping my hair survives next week.

Let the radiation begin.

It is a bleak and miserable day here today, which matches my mood perfectly. I had my first radiation treatment yesterday and whilst it wasn't as bad as the breast, it is going to be much more difficult than I thought. Before the treatment started, I met with a radiation nurse who explained the treatment in detail and once again went through the side effects I could expect. Last time I stopped listening when I was told my hair would grow back 'patchy at best', so this time I listened until the end - but I wish I hadn't. Apart from the baldness, I can expect the following to happen:

• headache (due to brain swelling)
• nausea and vomiting
• exhaustion
• balance issues and dizziness
• personality and mood changes (so if I am cranky when you call - it's not my fault!)
• scalp to become red and sensitive
• scalp to peel, blister and weep
• loss of memory and concentration (similar to chemo-brain - which last time caused me to forget which country I was in at the time).

Some of these side effects will be with me for 3-6 months after treatment is finished. The affects of radiation are accumulative, so the more you have, the worse you feel. This is not good considering I got home from treatment yesterday and felt exhausted, sick and had a headache. I think the next three weeks are going to go very, very, very slowly.

The radiation treatment itself isn't too bad, but I am not a fan of the mask. The mask, which they moulded a few weeks ago, is put over my face and affixed to the table. The mask is quite firm and you can't really open your eyes as it is squeezing down on your face. It actually reminds me of the scene in 'Girl with the Dragon Tattoo', where Mikael is in Martin's cellar, hanging off a hook with the plastic bag over his face - obviously minus the hook and the creepy, freaky, sexually depraved serial killer. For the twenty minutes I am lying there I try to keep my eyes closed and think of a happy place, but this is quite difficult when you have two people who are sticking things on your face and talking over your head; which interrupt my visions of sitting on a beach with a cocktail in hand.

I am not sure why, but I am finding this treatment more difficult to come to terms with than the last radiation. Maybe it was because I was initially relieved to hear that it was 'just' radiation and thought I could sail through it. I am scared about what could happen to my brain. When I had scans in December, they could tell that I had had radiation treatment to my breast as there was a difference between the right and left side. My radiation treatment finished 14 months ago and the skin and muscle still haven't recovered - how long will it take for my brain to recover? The brain is the engine room of the body - which means it can affect everything. I know that I am pretty tough, but nobody can tell you the extent to which I will be affected and recover. It is the unknown factor that scares me. I suppose if my personality changes, I lose half my IQ points, my memory is shot - I can always run for Prime Minister!

Radiation planning....again.

Its been a month since I have had my surgery and I am feeling pretty good. I do have times where I get really tired and I still feel a bit dizzy when I get up too quickly, bend over or look up. I am not starting my radiation treatment for another few weeks, so am going to go back to work for a few hours a day. I know at this time of year, most people are not looking forward to their holidays ending and starting a new work year - however, I am itching to go back to work!

In other news, I had my two year breast check which involved a mammogram and ultrasound. Usually I would feel a bit anxious about this coming up, which coincided on the second anniversary of my chemo starting. However, the good thing about having a brain tumour is that it puts things in perspective - so I wasn't worried about the results at all. I was not looking forward to the mammogram at all. The pain of having your boob squished between two cold machine plates until it is almost flat is not a pleasant experience. I kept looking at the screen to see if I could see anymore of those sinister looking black blobs - which I couldn't. I wasn't worried about the results as I have been poked, prodded and scanned so much in the past few weeks, I figure if there was anything scary hiding in my boobs someone would have noticed. It was the next day that I received a phone call from my surgeon to say that the scans were all clear and things were looking good on the boob front. Normally I would be overjoyed at this news, but with the impending radiation treatment, I am feeling a bit blah.

I went to the hospital the other day for my radiation planning, which I wasn't too concerned about. After my last planning experience, which was horrific, I thought things would be much better. Before I went into the room for my scans and planning, the radiation oncologist came and spoke with me about the possible side effects. She did talk a lot, but I didn't really take in much of what she said after she told me that I could expect my hair to grow back 'patchy at best'. It took all my strength not to burst out crying right there and then. I know it seems quite superficial, but the thought of losing my hair again is just painful - especially for only three weeks worth of treatment. Not that I would ever wish to experience the awfulness of chemo again - but I can understand why my hair evacuated my scalp for the six months worth of treatment. However, I am hoping that my strong, afro-like hair will be tough and stick through the tough times and stay with me for the next three weeks.

As soon as my name was called and I was taken to the scanning room with a radiation therapist, who remembered me from my last radiation. While she was making small talk, I just kept thinking that I can't believe that this is my life once again. As soon as she closed the door on the scanning room, I burst out crying - I just couldn't hold it in anymore. The therapist was very kind and tried to make me feel better by saying that this planning won't be as traumatic as the last one, but that many other women have benefitted from the trial and error of my breast radiation. I was relieved to know that I wouldn't be spending 2 hours lying in a room full of strangers, half-naked being pushed, prodded and moved around on a cold table. What I didn't realise is that the planning involved a warm mask being put on my face and clipped to a table until it hardens. I was told that it was like having a facial, except a facial doesn't feel like your face is being wrapped in glad-wrap until it hardens. It wasn't the most pleasant experience, but I am thinking that what I am going to go through in the next few weeks is going to be much worse.

Rest, recovery and my favourite Red!

I can hardly believe it is only three weeks to the day since I had my brain tumour removed. It still seems surreal to me. I think the recovery from this surgery has been easier than my first surgery. In the three weeks since my brain surgery, I have had nothing else to do but focus on my recovery. I have celebrated my birthday and travelled to Canberra for Christmas. In the few weeks after my last surgery I had my eggs harvested, my portacath implanted and started chemo - with my birthday and Christmas celebrations thrown in the mix also. Also, after the first surgery I came home with a wound drain and had to see the surgeon every few days to have my wound syringed. I am not sure if it is a psychological thing, not being able to see my wound, but I feel I have recovered faster from this surgery. Thankfully, I have been able to shower and dress myself since my surgery, so haven't had to get my mother to assist me with that!

I have seen a number of doctors since my brain surgery and they have all commented about my remarkable recovery. I still get tired, but my headaches have disappeared and my balance is improving every day. It has only been in the last few weeks that I have really thought about how different the outcome of my surgery could have been. I feel very grateful that I am able to walk, talk and function just as I did before my surgery. Once again I listen to my body and when I am tired, I lie down and I don't push myself. Hence, I am in bed at 8pm writing this blog.

There have been a number of good things that have happened in the past few weeks. Once again, I have been blown away by the tsunami of support that I have received. When we returned from holidays yesterday, there were fresh flowers waiting (which luckily hadn't died while we were away!). However, one of the best things happened last week, thanks to some organisation from a friend of mine. A friend of mine contacted my mother to see when a good day would be to have a morning tea before Christmas. All week friends had been saying that a mystery guest was coming along and I was asked numerous times by a variety of people if I liked the show 'Home and Away'. I had visions of me trying to make polite conversation with Alf! I was slightly worried about this, so invited a few friends around as well, who could act as a buffer, so it wasn't just me and Alf talking about flamin' galahs!

Thursday morning came and mum and I were busy getting things ready. I was getting nervous about who the visitor could be and trying to think up topics of conversation if it was in fact Alf who rang the doorbell. When the doorbell rang I almost fell over when I opened the door to find Greg Holmes standing there with flowers! It was one of those very rare moments in life where I was totally lost for words. My feelings were a mix of complete shock and relief that it wasn't Alf from Home and Away (no offence to Alf fans). For those of you who do not know me very well - I am a huge Queensland Reds fan and Greg Holmes has been my favourite player for a few years now. He was so lovely and stayed for almost two hours and even bought me a Reds jersey that was signed by the entire team. My sister happened to 'pop in' looking glamorous with a Reds cap for him to sign. She also needed some coolant put in her car, which Greg also helped her with. He was so lovely - posing for photographs and signing any Reds stuff I could find!

I didn't know the story of how he came to be at my house, as my friends had been quite secretive about it, so I asked him. It was arranged through one of the performance managers who spoke to my friend and asked Greg if he would mind visiting a woman who was quite sick. He didn't know what to expect - but it wasn't the vast array of morning tea delights, 8 of my friends and putting coolant in my sister's car! He said he was a bit nervous as he didn't know how sick I would be, if I was going to be propped up in bed and he wasn't sure what we were going to talk about. It was a week to the day since my surgery and I wasn't propped up in bed - I had been running around making sandwiches and getting things ready for the morning tea! I felt very lucky to have had a visit from my favourite Reds player and I said to him that I didn't feel sick enough to warrant a visit. I keep forgetting that I had malignant brain tumour removed and that is pretty bloody serious!

I have felt grateful that I have had the opportunity to rest, recover and enjoy Christmas without having to worry about treatment at this stage. I have seen the radiation oncologist and will go for my planning day next week, with treatment to start the second week of January. It will be three weeks of intensive radiation therapy - 2 weeks of whole head and 1 week which will focus on the site of the tumour. Whilst I am very happy not to have to go through the horror of chemo again, I am sooooooooooooo upset about going bald - again! Just when my ponytail was getting long and my hair had started to grow down! It just isn't fair that you have to go bald for only 3 weeks worth of treatment. I keep hoping that my super strong post-chemo hair will take pity on me and not evacuate my scalp - but I think that is overly optimistic. So many people have said to me that I have a great shaped head, that there are so many cool hats out this season and that I have an array of great scarves. To those people who do not understand what it is like to lose you hair - it doesn't matter about the shape of your head, the hat fashion or how cool my scarves are - I want to keep my bloody hair!

What a week!

Since leaving the hospital a few days ago, things have calmed down and I have started to process the magnitude of what has happened in the past week. Sitting on my bed, I can't believe that a week ago I had a malignant brain tumour removed. I heard my mother talking to someone about it on the phone and for a split second I thought 'geez, poor girl' then realised, that 'poor girl' was me!

I went back to my house the other day to collect a few things, which was the first time since leaving the house in such agony last Thursday. It was good to be there, but initially it felt a little weird. The last time I was in my room I honestly thought I was going to die. I have never been in such pain or so scared in all my life. I am so grateful to have my parents so close to me and a hospital 10 minutes down the road. Last time I was diagnosed, I had a week to process the diagnosis and wrap my head around the surgery. This time it all happened in a few hours, so it will take me a while to process. I was quite out of it on Thursday morning and didn't fully appreciate the extensive list of possible side effects from the surgery. People keep saying to me that I look remarkable for someone who had major brain surgery a week ago. Apparently it is remarkable that I can walk, talk, type and function. I would have to say that it was going to take a lot more than a 3cm brain tumour to stop me from talking!!!!!!! The reality is that I could have come out of the surgery a different person, but a week down the track I am pretty much the same - just with some cool new scars. I do notice that when I get tired I tend to drift to my left and it takes me a while to think of some words.

I had a bit of a traumatic day the other day when I went to have my bone and body scans done. I had to have a needle put in for the tests, but because my veins on my right arm had been hammered over the last week, they found it difficult to get a good vein. After a few attempts and a lot of tears they were able to access a vein. Lying there waiting to be scanned, I can't believe that this was once again my life. The technician was chatting to me and asking if this was a follow up from previous cancer, I had to reply, no, that once again I am starting all over and again and my two year follow up was the next day. Luckily the scans were all clear and I just have to deal with the brain tumour, which is a big enough deal.

My speedy recovery will be accelerated by my sentence at Mamma Bear's Health Retreat/Jail. Once again I have given my parents a few more grey hairs, but it is good for them to be kept on their toes! Once again we have been overwhelmed by phone calls, messages, cards, visits and gifts. It is amazing how quickly word spreads and how the community comes together. Today I had my staples removed, which wasn't nearly as painful as I thought it was going to be. I am sure this will make sleeping a lot more comfortable and even now I notice the ache in my head has subsided.

Next week is Christmas and in between making plans for the festive season, I will be going to see my radiation oncologist about the next step. I have heard that the radiation makes you dopey, bald and looks like you have a bad spray on tan. So basically, I will be like Brittany Spears having a break down; which I guess is better than Uncle Fester from last year!

Spoke too soon......

So for those of you who keep up to date with this blog, you may remember that I mentioned the shooting pains in my head that I was having last week. I had two days off work because of my headaches and was feeling a bit soft. I woke up on Tuesday and Wednesday with the pain in my head and nausea, which was very unlike me. Luckily, our cleaner was home on Tuesday and was able to help me. The pains continued for a short time and then ceased. My cautious father booked me an appointment with a neurosurgeon on Wednesday afternoon to have a check-up, as he was concerned about the shooting pains in my head. The neurosurgeon ordered a MRI and CT, which I thought I would get on Thursday, as I was tired and cranky and just wanted to head home. Thursday morning I woke up in a torrent of pain with nausea and the shooting pains in my head. Unlike the last two mornings, the shooting pains didn't subside and after 45 minutes of agony, I rang my parents at 4.30am.

Luckily, my parents are 10 minutes away - which includes getting out of bed, dressed and driving to my place. By the time they arrived, I was doubled over in agony, grabbing my head and throwing up in a bucket in my room. I can honestly say that I have never been in so much pain in my life. Looking back at it now, I thought I had an aneurysm and that was going to be the end of me. We have a history of high blood pressure and aneurysm in our family with people passing away at 36....which was how old I was. Dad bungled me into the car, gave me a injection of Maxalon to stop me throwing up and drove me to the emergency department of the local hospital. I hear about long waiting times in waiting rooms, but I was sitting down for about 30 seconds before they whisked me away to see a doctor. Mum told me yesterday that dad also suspected an aneurysm, which helped speed up the process. I was a bit out of it, but I remember them giving me a magical drug which made the pain go away.

I was assured by the doctor that it wasn't an aneurysm, otherwise I would be dead and not sitting up talking to the doctor. I felt somewhat reassured, but then wondered what else could be wrong. I was taken for a contrast CT and the results came through. Before I knew the results, I heard the neurosurgeon from the day before saying 'right, what ever that is, it has to come out today'. Luckily he was operating at the hospital that morning and he was able to fit me into his list. It was very surreal, going from lying there with a headache to facing fairly major brain surgery later that day. I had to ring work and let them know I was in the hospital and wouldn't be at work that day. The events of the day are still a little fuzzy for me, but I had an MRI and was taken up to the operating theatre. The MRI revealed a 3cm malignant brain tumour which was pressing up against my brain and causing all these issues.

I woke up a few hours later in the ICU - tumour free and in a magical cloud of anti-pain medication. I was a bit out of it for a while, I am told that my brother came to visit me and we had a great chat - none of which I can remember! I also have vague recollections of cancelling a date on Thursday night via voicemail...........I apologise now to that particular gentleman! Coming out of the ICU, I was advised that I can walk, talk, touch my nose, recognise people, colours and move all my limbs. I didn't have epilepsy, seizures or a stroke - which upon reflection makes me realise just how bloody lucky I am! I have spoken to a few of my friends who are doctors and they all have very concerned looks on their faces when they look at my scans. I guess the benefit of being non-medical, is that I didn't understand just how sick I was. The rest of this week will be tests, tests and more tests. This will include new tests and my two year check up. I feel somewhat ripped off that I am coming to the end of one cancer crap and starting a new one simultaneously.

Sitting here in hospital six days later, I am still coming to terms with what happened. I still can't believe that only a few weeks ago I was so excited about getting to my two year anniversary and having my port removed. Thinking that all this cancer shit was behind me. I thought I was done and dusted and could continue with the rest of my life. I was actually thinking about the blog and wandered what to write about since the tumour thing was finished. I guess I spoke to soon.

I am sure that I will once again find humour in this tumour, but at the moment, I feel ripped off, pissed off, angry and sad. That is even before I get on to the topic of losing my hair......again!!!!!!!!!!!!!!!!!!

Lumps, bumps and scars

Leading tup to the removal of my port - I was excited. I felt like it as a big milestone having that thing out of my chest. I had a very quiet weekend, spending the weekend relaxing and thinking about the past two years. Over the weekend, I was having strong shooting pains in my head - like I was being stabbed in the head. After an x-ray and ultrasound, it was discovered that I had a lump in my thyroid - for which I had to have a biopsy.

It was a good thing that I was so busy at work, because I didn't have any capacity to think about it. I do not think about the cancer coming back, even when I went to the same place for the ultrasound and biopsy. It was even the same man who did the biopsy - and I did tell him that the last time he stuck a needle in me, it was cancer and I don't want to go through that again since my ponytail is getting long!

Even after having a needle plunged into my neck, I didn't even think about what it could be. When the results came back as benign, it was only then that I realised that it could have gone the other way. I think I felt that they had blasted me so much with chemo, that there can't be anything sinister growing. I don't think about the cancer coming back, even if it does, I kicked its ass once and I will do it again.

The scar when my portacath was removed is healing well and the pain is pretty much gone. I did have a friend comment on it today to say that I should start putting vitamin e cream on to reduce the scar. I put Bio Oil on my last scars and they are barely visible. I started thinking about my scar on my chest which is pretty visible. I am not embarrassed by it, I am not ashamed by it and I wear it proudly. I think of my scars and a sign of a battle that I fought and won.