First week of recovery mode.

It's been one week since radiation finished and so far my scalp seems to be holding together pretty well. Pre-radiation I was advised to expect my scalp to blister, peel and weep - but none of those things have happened so far (touch wood). I am putting down to the fact that I rub about 43829834kg of Moo Goo scalp cream into my head twice a day. I don't know what is in that stuff, but I am sure it has some magical quality. Overall, I am feeling not as bad as I had imagined. I haven't had the vomit monster come and visit me again. I have been feeling nauseous, but luckily I have managed to ward off the vomit monster with a range of drugs. I still feel dizzy at times and feel like I am going to lose my balance, but luckily Barney is never too far away so if I do fall, I will have a soft landing. I am on a reducing dose of steroids and seem to be coping with it well. I still feel angry and short tempered, but instead of my poor mother bearing the brunt of this, I am aiming it at Thomas and Carla from My Kitchen Rules.

The overwhelming feeling I have at the moment is exhaustion. I just feel like I have zero energy and the same amount of motivation - which is so unlike me. I feel like staying in bed, going to sleep and waking up some time in June when I am back to normal. Although, that would mean missing a few of the Reds home games, which of course I would never, ever do! I have been out a few times for short periods and then find that I have to come home and lie down for a few hours to recover. I look forward to the day when I can go to brunch for an hour and then still have energy to do something else. A friend of mine invited me to head up the coast for the day and my first feeling was that I felt nervous about going out for so long, so far from home. I have got to snap out of that! Hopefully, I will be up for a beach trip in the next few weeks. I have been feeling a bit down this week and not wanting to do anything. I have noticed that I have been struggling to remember words, people's names and have been writing down wrong numbers. Also my balance has gotten worse since the radiation finished. Add to that I have hurt my back and now walk like I should be wearing a cloak and living in a remote bell tower in some dark Eastern European county. I am really bummed about not being able to drive for another three months. So, I am taking things in hand and going to try and do something about it. I am going to see an Occupational Therapist who specialises in post-brain surgery and have an assessment. A friend of mine pointed out to me that essentially I have had a brain injury and that there are things I can do to work on it. I would hate to get assessed in May and be told that I can't drive for another three months!

I hate this feeling of running on empty. In true Mama Bear style, I am on every vitamin and nutrient that boosts brain function and recovery known to man. I think there is a correlation between how good something is for you and how gross it looks and tastes. I am on this "super food powder shot" which apparently is amazing, but looks and tastes like dirt. It isn't that bad, once I block my nose to drink it, wash it down with a glass of water and follow it up with a double Kool Mint chaser.

Tomorrow I have my follow up with the neurosurgeon, so will be interesting to hear what he has to say about my progress. I have been doing my balance tests and they have been pretty bad. Although, mum also tried the balance test and let's just say I don't think she is going to qualify as a deep sea diver anytime soon. It is the first Reds home game next Saturday and my aim to to get there and not fall over in the process! Here's hoping the boys will follow up their victory over the Tahs with a squashing of the Force.

Radiation over red rover.

Yesterday was my last radiation treatment and instead of feeling happy it was all over, I have been cranky and short tempered. I am happy that the brain frying has come to an end and I am very, very happy that I never have to put that bloody mask on again, but I still feel cranky. This could be due to the steroids I am on, so I could blame roid rage (this roid rage could also explain my Tourette's when I watch My Kitchen Rules). I found out at treatment yesterday that I won't be able to drive for another three months. To say this was slightly upsetting is a massive understatement. I love my car, I miss my car and I love my independence. Today would have been 21 days until I could get in my car and go somewhere alone. As my mother frequently tells me the Queen doesn't drive herself. I know this may come as a shock to some people - but I am not the bloody Queen and I love driving!

When I got home from the hospital yesterday I was so upset. I felt like this was a big blow. I know it is not as bad as being told that the tumour was back or that I would have to have more treatment, but this has implications beyond getting from A to B. When I got home I flopped on my bed and cried. Within about a minute the divine Barney jumped on my bed, put his head on the pillow next to me and wrapped his front leg over my neck. There is just something about a Barney cuddle that makes things better. Even as I lie on my bed typing this, he is curled up next to me and I find comfort in him always being so close. Anyway, back on the topic of not being able to drive - words can not express my frustration! I hate having to rely on people to go anywhere and I really miss being able to go to places alone. It also raises the question of when I will be able to move back home to my lovely housemate. My parents place is closer to public transport, which will make it easier for me when I eventually head back to work, but staying here for another three months is........... Don't get me wrong, I love my parents and they are amazing, but I miss being able to do my own thing and having my own space. So the next time you just jump in the car and pop out somewhere - appreciate your ability to do that.

I also found out yesterday that my hair could take up to six months to start coming back. I am hoping that I have super human hair growth power and it won't take that long. However, it it does take six months to start coming back, at least I will be able to feel the wind in my hair when I drive with the top down in August! I am still lathering myself with the Moo Goo Scalp Cream and so far it seems to be holding up pretty well. I hope it doesn't turn nasty in the next week or so.

A few months ago I read an article in marie claire that annoyed me so much that I wrote a letter to the editor. Looking back on it now, I may have been a tad sensitive about this topic and given that it was 8 days after my surgery I may blame drugs for my rant. The article was about a successful, single 34 year old American woman who told the story about getting her eggs harvested. She made a comment that egg harvesting was usually for 'last resort cancer patients' which really bugged me. She also complained about the bloating, acne, mood swings and getting her period for the first time in 17 years and how this was hard to juggle with dating her new boyfriend. Something snapped in me and I typed off an angry email. In the March edition of Australian marie claire - you can read my rant!

This may seem strange, but I bought my mask home from the hospital. I am not sure why and what I am going to do with it. Maybe I will smash it, maybe I will let Barney destroy it or maybe I will keep it as a reminder. But, then again, do I want to be reminded of the nastiness of being put in a mask and clipped to a table while your brain is being fried? In complete contrast to this burst of sentimentality, I have started clearing out reminders of my breast cancer. I still have cards in my room and I haven't bought re-fills for my filofax since 2010. I am not sure why, but until now I couldn't look at that diary again, but I feel that it is time to move on. I will go and buy new re-fills as soon as mum can drive me to the shops!

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!