It's Finally All Done!

A bit of catching up is needed again in regards to my blogging.

My last post was about my first radiation session, so I’ll pick up from there. Wearing the mask for the first few treatments was pretty awful. There were little lines in the wood on the roof, so I would focus on counting those to take my mind of the feeling that I was suffocating. Thankfully the treatments were very short, as were the waiting times. Most days it’d be about 10 -15 mins from parking my car to getting back in it to go home!

I think after the first week I had gotten used to the mask and it didn’t really bother me any more. About 7 or 8 treatments in I started to get a very red chest and my throat started hurting a bit. It didn’t really make me tired, but it was very draining to have to go every day.

After that my chest got redder and drier as the treatments progressed, thankfully my throat never got any worse. I did get a dry mouth that was particularly bad during the night. As my chest got drier it began to really itch and it was so difficult not to scratch it. I’d often have to sit on my hands so I wouldn’t touch it.

It’s now been just over 2 weeks since I finished (yes, FINISHED!!!) my treatment. Still feeling fine! The redness is going away and it’s nowhere near as itchy.

I’m now well and truly ready for things to go back to normal for me! I feel like in a lot of ways my mind has already moved on and now I’m eager for my body to follow.

Anyway, I’m done, I’m done, I’m done! No more treatment!

Starting Radiation

On the 18th of May I had my first of 20 radiation sessions. These are daily for four weeks (no treatment on the weekends). I went in for my first treatment and they put my mask on and strapped me down to the bed. They spent a few minutes lining me up correctly with the lasers (and speaking what sounded like another language), took an xray, then left the room while they radiated me.

The machine has a big arm that reaches above the bed and over my face (Click here to see a picture of one http://folhealth.com/Varian%20iX%20with%20patient.jpg). The big circle part over your face (very technical terms I'm using!) open up and then you hear the machine turn on and start radiating. You can't feel or see anything. Then the whole machine rotates and the arm goes underneath you and you are radiated again from the bottom. Mine is twice from the top and twice from the bottom. All up it only takes about 2 minutes from the time the technicians leave the room, till they come back in and take my mask off.

After my first session I saw a nurse who explained the side effects. I was told not to put any chemicals on my skin. That means no perfume on my neck/chest, I have to be careful when washing my hair that the shampoo doesn't go on my neck, chest or back. I've been told to regularly use sorbolene cream to stop the skin from drying out too much. She also told me that radiation causes fatigue and that this would be worse about 2 weeks after I finish the treatment.

Hannibal Lecter

It’s been a month since my last post. This does not mean that things have been uneventful, just that I’ve been busy and blogging has not been a priority! Sorry to everyone that has been waiting for a post. I will now update you on what has been happening. I’ll go back a month to the beginning of the radiation (a lot has been happening so this may take more than one post!). My radiation journey began on the 10th of May with a preparation session. I lay there while they lined me up with lasers from the roof and walls, drew all over my chest and neck, scanned me, then gave me three little tattoos (great for someone with a huge needle phobia!!). These tattoos are so that they can line me up with the lasers to ensure I’m in the exact same position each time. I had read about people needing to wear a mask for their radiation to keep them still and in the same places, so although the tattoos were bad at least I wasn’t needing the mask. Three days later the hospital called and it turned out my relief about not wearing the mask was short-lived. They had decided it was best that I did have one. Now I had to have the mask made and do all the scans etc for the preparation again. So not only would I have to wear the mask each session, I now had 3 tattoos for no reason! Having the mask made was pretty awful. I lay on the bed (which feels like a slab of concrete) and they taped cotton pads over my eyes to protect them then gave me a bell that I could ring if wasn’t coping. They then lowered a large piece of soft mesh over my head, neck and shoulders, pulled it tightly and clipped it into the sides of the bed. They then contoured it to my face and neck and let it dry and harden. To speed up the drying process they used ice packs. I’m not a claustrophobic person, but having this so tightly over my face with my eyes covered for 15-20 minutes was very uncomfortable. I had to continually remind myself that although it was difficult to breath, I still could breathe. The mask was so tight that it left indentations all over my face, squashed my lips into my teeth and hurt the end of my nose. But at least I couldn’t move and that is the intention! After the mask dried, they spent about 5 minutes lining me up with lasers again. This was also strange as I couldn’t see because of the cotton over my eyes, but they were moving the bed up and down, and back and forth. It made me feel quite dizzy and totally mucked up my spatial perception. I couldn’t tell at all how much I was moving. They stuck tape all over the mask and marked the radiation reference points. I then had another CT scan with the mask, which the radiation oncologist would use to map my radiation area. I left feeling quite nervous about the radiation. It was going to be four weeks of lying topless on a slab of concrete while they suffocated me with a mask that made me look like Hannibal Lecter. But at least it doesn’t involve a needle!

I want to be me again

I don’t know what I thought my last chemo treatment would bring but after envisioning it for months, it became some sort of benchmark I had to reach in order for things to get better. I think that somewhere in my mind I’ve been thinking “If I can get to treatment six, then everything will be ok”.

Although I feel so excited to have reached this target, I don’t think I could feel much further from my normal pre-cancer self. I’m not totally delusional, and didn’t actually believe that I’d finish the chemo and instantly be fine, but it’s such a crappy journey to be on that it’s hard not to have irrational expectations and be overly optimistic. However, the reality is that I still feel really lousy. I’m still exhausted, run down and just generally out of sorts. I still have tingly fingers, no hair and black circles under my eyes. The face that stares back at me in the mirror still definitely looks like a chemo patient.

I know I need to be patient and give my body time to recover, but I don’t want to. Instead, I’ll have to focus on the positives. The radiation oncologist spent a lot of time showing me the masses in my pre-treatment CT scan, compared with the one I had at the end. Seeing how huge the cancer was to start with and that it is essentially non-existent now, is a somewhat comforting feeling. The tiny grey area that still remains on the scan, should disappear with the radiation I will soon start.

I have made it through half my treatment (the chemo) and have half to go (the radiation), but I think the first half was probably the majority of the fight and I made it through that successfully.

Woohoo!!!!!

Good news... my scan was clear. Well, as good as! There are two nodes right in the middle of my chest that according to the radiologist's report are slightly bigger than 'normal'. They are 11mm and normally would be about 8 or 9mm. But considering that before my treatment they were 100mm, they've certainly shrunk a lot! My oncologist said that had I been a normal person (haha!) walking in off the street, he would look at the scans and say there was nothing wrong with me. So the extra 2mm is probably nothing and my chemo will definitely be over this Friday!

I have an appointment with a radiation specialist on the 2nd of May to discuss whether I need radiation just to be sure all the cancer cells are gone. I'm feeling pretty anxious about this appointment as I'm having very mixed feelings about having radiation. Obviously I'd like to be sure all the cancer is gone, but radiation has many risks. As it's my chest that would be getting radiated it can cause heart problems and there are also quite high risks of it causing secondary cancers later in life (being my chest this risk is particularly true for breast cancer).

So I'm feeling extremely relieved that the scan was clear and I won't have to have any more horrible chemo sessions. Hopefully I won't be too anxious for the next week and a half while waiting to find out about the radiation.

It feels like I was just writing about being two-thirds of the way through and in a few days I'll be saying that I'm six-sixths of the way! The whole thing! Completed! Done! Over!