Woo hoo for Moo Goo!

The last week of full head radiation is behind me - thankfully! I have to say, it was bloody tough. Whoever said that radiation was going to be easy peasey - is an idiot. That is right, that idiot was me! I had gotten through the last of my whole head treatment and could see the flickering light at the end of the tunnel. I had been feeling well enough to have a few outings during the week, all of which were followed up by long afternoon naps. Thursday night I was getting ready for bed and started to feel a bit off colour. It was at approximately 10pm that the Vomit Monster came to visit and didn't leave until 4am. Needless to say it was a very uncomfortable and sleepless night. The issue with brain swelling is that it not only causes headaches, but vomiting and nausea as well - it is all very chemo-like and not very fun at all. Although, I would like to comment that 6 hours of vomiting does wonders for your stomach muscles!

After a night of no sleep and the removal of most of the fluid from my body, I was feeling pretty horrid on Friday. I went to the hospital early so that I could be seen by a radiation oncologist. I literally dragged myself out of bed, put what ever clothes I could find on and went to the hospital. Of course, this would be the one and only time in the last 2 years and 3 months that I get to see a cute, lovely and young doctor!!!!!! Where is the justice???????? Given that my blood pressure was very low, I was feeling horrid, the power was lost to the radiation building which caused a 2.5 hour delay for treatment - I was allowed home without having my brain fried. This means that my treatment will finish on Tuesday, but I was happy to have a day off.

As mentioned in my last post, I had my hair clipped short and it was still falling out. My clothes looked like I had been attacked by some black short haired animal. When I say falling out, it was falling out pretty much everywhere - except a very stubborn tuft on the crown of my head. That is also the hair that grew straight up and took much product to flatten. Those are some tough hairs! After a few days of hair depletion, I realised that I started to resemble Sloth from the Goonies - so I attacked my head with a razor to try to regain some dignity. I am not sure if Sloth is an improvement on my Uncle Fester look of 2010, but I still felt it needed to go.

I have been continuing to smother my head in Moo Goo Scalp Cream and so far it seems to be holding itself together pretty well. I do not want to get too excited, because that is what I thought about my hair this time last week. I have been told that the week after radiation finishes your scalp gets much worse before it gets better. I have also noticed that my forehead is starting to look very tanned, so I feel that it fits in with my happy island cocktail image during radiation - at least I have the tan for it!

I have been thinking about going to away for a week with some friends when this thing is over. I have been reluctant to book anything, as I don't want to make plans and then have to cancel. If I am totally honest, I am also worried about going away and not having hair. I know the hair thing seems superficial, but to me it is a very big deal. This week I watched 18 months of hair growth go down the drain - literally. Part of me wants to be brave like the lady I met at radiation and the other part of me is too afraid to be so exposed in public. I know it seems stupid as people stare anyway and know I have no hair because of the scarf. No matter how many times people tell me I am brave and strong for going through treatment - it's not bravery when you have no choice, it is brave when you make the hard choice. I just don't think I am that brave.

A whole new bald game.

My hair started to come out in clumps on Monday and I was hoping that it might stick with me long enough to last through the whole head radiation, which would give my scalp some protection from the powerful rays. However, once it started coming out there was no stopping it. I made the decision that I would have my head shaved as I couldn't stand watching the long hair come out in such large amounts. Mum drove me over to my sister's place and she put her clipping skills to work. To ease the pain of losing my hair, she first cut my hair in a very unstylish bowl cut, so then I wasn't so upset about farewelling that hairstyle. I was sporting a very short number two, but since the hair is still coming out - it has gone from number two all over to mangy looking with large bald patches exposing the bright pink scalp. When I rub my hand gently over my scalp, I end up my hand covered in short dark hair. Not too dissimilar to patting a doberman, rottweiler or any dog with short hair that is Garnier Cappuccino colour. All in all it is hideous to look at and painful to touch.

The doctors and nurses advise you that radiation is like bad sunburn. However, it is like bad sunburn in the same spot every day for three weeks. Add to this that my scalp has always been protected from the sun and it is now revolting about the amount of radiation exposure it is getting. It is bloody sore. I have been smothering my scalp in Moo Goo Scalp Cream and this has definitely given me some relief from the pain. I still have three treatments to go and I just hope that my scalp holds together a bit longer and doesn't blister, peel or weep. To add to my frustration, my nails have gone gang-busters and would be perfect to scratch my irritated scalp, but I have thus far resisted the temptation. My scalp will get worse before it gets better, so I am prepared for a few more painful weeks.

My family and friends have been a constant source of strength for me during this time and I love all the messages that I have been receiving. I have found that times like these really do sort out your true friends, the ones who will stick with you through thick and thin. Pretty much all of my friends have been amazing, but there have been some whose absenteeism has surprised me. I know I can't expect people to react to these situations in the same way that I would, but it has reiterated to me that when you don't know what to say to someone - just call and say 'I don't know what to say'. Once again, Barney has been my constant companion and a great source of entertainment for me. My mother cries at least once a day and it breaks my heart to see her in so much pain. I think this is harder on her than it is on me, as she is helpless to protect her child from this.

I finish treatment on Monday and that is when the repairing can begin. I am on quite a few drugs at the moment, most of these are to combat the side effects of the drugs I am taking, and this has really stuffed by up immune system. I am feeling very depleted, exhausted and very run down. I have to be careful about what I can eat, drink and ingest at the moment, but as soon as radiation is finished Mamma Bear's Health Retreat/Jail will be in full swing!

Two weeks down, one to go.

So another week of radiation is behind me and all in all I am feeling much better than I was after the first week. I am on a long list of drugs, all of which include other drugs to combat the side effects of the drugs - but at least the headaches, nausea and vomiting are under control. I am on a steroid, which has artificially increased my energy levels, but I still feel exhausted. I still get dizzy at times and my head is pretty cloudy all of the time. I notice that I struggle to think of the right words to say and sometimes forget what I am saying in the middle of a sentence. For those of you who know me well - it will come a a shock that finally I am a loss for words!

Today marked two weeks into the treatment and was also the day my hair has started to come out in clumps. I knew it was coming and I have gone through this before, but I still balled my eyes out in the shower when it started to happen. I hated being bald. I remember the first time it happened, it shocked me that this meant I was really sick. I don't want to be sick like that again and I certainly do not want to be seen as the sick person again. When you are bald, you can't hide that something is wrong and people look at you differently. I am still me, I just happen to have no hair and recently had a brain tumour.

I did spend most of the day feeling sad and sorry for myself. I really didn't want to be here again in my life and I was hoping against hope that my hair wouldn't abandon me this time. I know it was overly optimistic and went against every medical opinion, but I was hoping there was some slim chance I might be the medical miracle who got to keep her hair. Alas, this was not meant to be. Anyway, I think the universe was sending me a sign today to not get too caught up in the hair loss issue. I went to radiation and they were running about an hour behind, so had to sit in the waiting room for longer than usual. A lady and her daughter sat next to me and the mother started chatting with me. She was bald and had a large scar across the top of her head - so we bonded over our brain tumours. She was telling me that she found her brain tumour after falling over in the shower, which was a week to the day that her husband had died. Suddenly, I didn't feel quite so grim about losing my hair - this lady had lost her husband and was now fighting for her own life. It certainly puts things in perspective. So, hair today, gone tomorrow at least I haven't lost my husband and battling for my own life. Thanks universe for the slap in the face - I will be better tomorrow.

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!