Thursday, December 29, 2011

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!

Thursday, December 15, 2011

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!


Monday, December 12, 2011

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!!!!!!!!!!!!!!!!!!



Sunday, December 4, 2011

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.