Saturday, January 28, 2012

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.

Monday, January 23, 2012

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!

Sunday, January 8, 2012

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.