Wednesday 28 November 2012

Now That's Pouty

We saw the oncologist today before my treatment. He walked into the room, took one look at me and whistled saying, "Now that's pouty!"

My face is swollen. I have enormous lips. I'm sure there are some women out there that would pay a fortune to have such large and luscious lips, but me, I'd rather just have my regular lips back please. With all the swelling and ulcers I'm not able to eat anymore so I'm drinking plenty of smoothies throughout the day. 

The doctor feels that not only am I special enough to have such a rare cancer but I am also one of those rare people that has an extreme sensitivity to the radiation treatment. He said he really wouldn't have expected to see this level of reaction until at least the end of the fourth week. His feeling is that we continue to persevere with the treatment at this stage and just try and manage the effects as best as we can. If we were to stop the treatment to allow my body a chance to heal before resuming it would not be as effective in the long run. I think if I can continue to go on with all the extra assistance then I'd much rather get this over and done with.

The extra assistance....my medicine cupboard is ridiculously full. In fact it has overflowed to the top of our wardrobe. I have three mouth washes that I'm using approximately every two hours, one to keep my teeth clean, one to keep the ulcers at bay, and the other is a salt wash. I also have drops to prevent any yeast infections - now that the radiation is killing all the healthy bacteria apparently the bad bacteria can have a field day! I have three different types of local anaesthetics, one (hard to swallow) gel wash to swish and swallow, one liquid to just swish, and one topical to just daub where needed. I've moved past the Soluble Panadol, the Soluble Panadene, and the Panadene Forte, through to two different doses of Morphine. One is a slow release suspension and the other is a quick hit liquid. I now also have tablets to address the side effects of the morphine. Some to stop the nausea and some to help keep the other end going. I have lotion to help relieve my facial skin burning. Cream to help the acne that the radiation has caused (I feel like a spotty teen - who knew acne was a side effect!?!?!) Three different lip balms, admittedly I'm not using the one that is minty because it stings and I figure I have two others. Now, once I'm finished all my treatment I can then start using the myriad of other mouth washes, toothpastes, gels, and fake spit. All of which will compensate for my lack saliva.

After speaking to the oncologist today and hearing how he's surprised by my reaction I was definitely feeling pouty.  I keep telling myself it is only for a time but gee this is a horrible time. I had a beautiful friend stop by tonight with thick shakes and a voucher for our grocery bill. Thank you so much gorgeous girl! Now I know I don't really need to be pouty with such beautiful generosity!





Monday 26 November 2012

Food


Food is such a big part of our lives. It is so much more than just our source of nutrition and sustenance. We use food to celebrate special events and occasions. As a family we meet around our dinner table each night. Lively conversations are had, discussing all the details of our day as we enjoy sharing the meal together. My lovely husband is a fantastic cook. (One of the many reasons I married him!!) He is more at home in the kitchen than in the garage and most nights you will find him at the stove whipping up something tasty for us all to eat.

Since Thursday I've thrown a spanner in the works for him at meal times. I can't taste anything. Nothing. No, that's not entirely true. I could still taste, just ever so slightly, blue vein cheese, anchovies, and coriander. It is the strangest thing to put something that I love the taste of into my mouth to find there is no taste. My mind is really struggling to comprehend it.  So at the dinner table I offered up a differently worded thanks, "thank you for cooking, great textures"! 

I saw the dietician on Friday and he's told me not to worry about eating fruits and vegetables or high protein foods. My body will use too much energy digesting the food rather than using that energy to fight the side effects of the treatment. So I've been told to eat junk food. Anything high in calories. He said if I start to lose weight they will need to insert a feeding tube. No thank you! I will eat. And I will eat junk! ......It's just really unfortunate that I can't taste it!


~~~~~

I started writing this three days ago and I was about to delete it to start again because things have changed so drastically. But then I thought it was still a step in my journey. 

My ability to enjoy food has completely gone down the hill. I now not only have no taste but it is so sore to eat, swallow, and talk. The oncologist has given me Panadene to take and has said by the end of the week I'll probably be on morphine just to manage the pain. It worries me to think of this getting that much more painful. I have a local anaesthetic to swish about my mouth 15 minutes before eating to try and make it easier. Although, if I can keep it in my mouth for the prescribed 30 seconds without gagging on it and spitting it out I've done well. It's consistency is not unlike a thick boogery slime. I found tonight that it didn't really help. It was a struggle to eat even mashed avocado. I found today was predominantly a smoothie day. The dietician did say smoothies were a good option. That might be my main diet for the next 6-8 weeks. 

I saw the dentist this morning and she was pleased with my mouth. She said it was nice and clean. Now that it is just a mass of ulcers I need to take care to keep it clean to avoid infections. I can't actually brush my teeth any more due to the pain from the ulcers. First time I've ever had a dentist tell me not to brush! My world is topsy turvy! She has given me a mouth wash that will replace the brushing and a different anaesthetic to apply to the ulcers. 

Today's treatment was a challenge with my mouth being so sore I found it difficult to get the mould into my mouth. My face is also slightly swollen so the mask was quite a snug fit. They ended up trimming a section of it from around my mouth just to make it fit without cutting into me. 


 

Monday 19 November 2012

Week Two

Week one is done! Six more to go....


I laughed when the girls in the radiology department told me I could have the weekend off "for good behaviour", but I have really appreciated not having to go into the hospital for the last two days. It has been a good break from our new routine. It was made all the more nicer by having the opportunity to catch up with a good friend who was over visiting from the Eastern states. I enjoyed a bit of retail therapy with her on Saturday down at Harbourtown!

Today being Monday, though, we were back into it again. After my zapping we had an appointment with the Dentist. She was happy with my mouth but said by the end of this week I probably won't be... I now have a fancy mouthwash to use. This will hopefully keep the mouth ulcers at bay, although I have noticed two now on the inside of my lower lip. I also have drops to use to prevent any infections caused by my usual healthy mouth bacteria being wiped out by the radiation. I'm really feeling anxious about what this week will bring with it. 

I did find out that the redness on my neck is actually an allergic reaction to the Sorbolene cream and not due to the radiation. Typical of my skin really. I often react to topical skin preparations. I just wasn't expecting to react to the pure Sorbolene. So I've gone back to using my usual moisturiser tonight. I'll double-check at the hospital tomorrow to make sure it's okay to continue to use it. It's an aloe vera-based one so maybe it will be alright.

I stopped in at the hospital to see a new friend today. She also has cancer of the salivary gland. A different type to me. Still cancer all the same and still scary and still overwhelming! Talking to her was great. Fantastic actually! It was good to have made a new friend but equally sad that it was due to our sharing a common problem. I did really appreciate talking to someone who knew more closely to what I'm going through.  As good as it was to chat with her, I did come away from our conversation feeling really yucky emotionally though.  

It's the reality of it all, you just can't escape the reality of it. I do well distracting myself from this new reality for the most part. I busy myself with work, or the kids, or just plain ol' blipping out on a game on my iPad! Usually when I least expect it I get hit with an overwhelming flood of reality. It brings me to tears. I don't like it. The more I start to experience these side effects, too, the more I worry that I physically won't be able to distract myself from my reality. That scares me. 

Thursday 15 November 2012

The side effects

I've had four treatments of radiation now. We are feeling a bit more 'in the swing of things' at the hospital now. We allow ourselves about 40 minutes to get into town and find a park behind the hospital. Once we've arrived we head over to the ladies at reception desk to be checked in and to have my appointment confirmed for the next day. I get a bright yellow band stuck on my wrist before heading to the waiting room. After I've received my daily zapping we head back to the reception to sign the Medicare papers and sign out.

One thing that has really surprised me is the side effects. They've started a lot earlier than I was told to expect them. I know I've already blogged about it, but really, it is kind of freaking me out! I mean, they told me to expect it next week, not now!! Last night my skin on my neck started to look just slightly pink. It was also feeling a little bit prickly, similar to a sunburn but without the heat. Today that feeling has really intensified. My skin is quite itchy and pink. I've started slathering on copious amounts of Sorbolene cream. I fell asleep in the car on the way home from the hospital this afternoon too. A combination of my treatment, a warm car, a late night, and an early morning I'm sure, but boy, was I just beat! Bone tired! I've just noticed while brushing my teeth that the uncomfortable feeling on the inside of my lip is due to the beginnings of some ulcers. Wow! Time to crack open my fancy medicated mouth wash.

Tuesday 13 November 2012

Day 2

After the anxiousness of the unknown yesterday I thought today may have been easier. I knew what to expect and where to go in the rabbit warren of corridors, waiting rooms, and treatment suites. The process of being strapped into the machine was certainly a lot quicker than yesterday. I was also quite pleased with myself at not gagging as much as yesterday too. I had a brief chat with another patient beforehand that was quite pleasant, if not a little morbid in topic. The staff were again lovely. We also managed to bag a park right near the entrance - ahh, small mercies! The aspect of the day that I've really struggled with is the side effects of the treatment are already making themselves known.

Last night at around 2am I awoke in a sweat, feeling very hot, particularly around my neck. When the nurse asked me how I felt after yesterday's treatment I mentioned it but said I thought perhaps it was just "all in my head" being that it was too early to be feeling anything yet. She corrected me, though, saying it was quite normal to have that sensation and to have it at this early stage. She was reassuring and said it wont happen every night. Phew!

It wasn't long after my treatment this afternoon that I also experienced another side effect. My mouth has become quite dry already. Turns out our spit is not only useful for eating but talking as well! I bumped into a friend at the supermarket and by the end of a short conversation my mouth felt very "gluey" and I was ready for a large drink.

At first I freaked out about the effects staring sooner than I'd been told to expect them. I mean, if I'm already experiencing these ones when will others start and how severe will they be? At the same time, though, if the treatment is already effecting my body then its also starting to work on getting rid of that cancer!

Monday 12 November 2012

One Down...

...only 32 left to go....

Well, today was day one of my treatment. It was an unusual feeling as we headed into the hospital this morning. So many emotions, it was really quite overwhelming. We weren't sure what to expect or how long we'd be there.

All the staff that we met today were absolutely lovely. It was a relief to be met at the front reception by such a lovely lady who took the time to go though all the ins and outs of the treatment schedule, Medicare forms, and parking permits with us. Although both Steve and I nearly lost it when she mentioned she'd be seeing us each day until AFTER Christmas!

The next step was to meet with one of the nurses. We spent approximately half an hour with her as we discussed the side effects, skin care, and general health during treatment. She gave me a tub of Sorbolene skin lotion to use (at least 2-3 times a day) and some mouth wash. She booked me into a Look Good, Feel Better hair and make up session specifically for women with cancer. We went through the relevant paperwork and then we marched down the corridor to wait for the treatment.

The next half an hour was in the treatment room. The time consuming part of radiotherapy is the actual setting up. They need to strap me into a specially made mask which then clips onto a bed/table thing to ensure I'm in the exact same position for each treatment. I'm claustrophobic at the best of times so this mask is quite, um, we'll, challenging to accept. It is helped slightly by the fact I have to have a clay mould in my mouth to hold my tongue and jaw in the same position too. I'm even worse with a gagging reflex so that meant I was too focused on not gagging to worry about being claustrophobic!

Once I was finally ready to go they took a couple of x-rays, just to make sure I was in the right position. It's all very precise! The machine did its thing and zapped radiation into my neck and face. That part of the treatment took all of about 2 minutes. I didn't feel a thing. I find it hard to wrap my mind around the thought that something so aggressive as radiotherapy can actually be painless to have done. (I'm not saying anything about feelings of pain or discomfort of the side effects that are yet to come!)

So, now what? A tablet to help sleep well tonight. Off to work for a few hours in the morning before heading back to the hospital for 2 of 33.

Thursday 8 November 2012

4 more sleeps

It's getting closer to my treatment starting. I'm finding in the quiet moments of the day, especially, my mind is left to think on what's coming and the anxiety increases. I know I shouldn't dwell on it, but I do also think it's ok to have those moments...its just a real effort trying to keep them under control and at bay.

And it is such an effort. Never before have I had such a continuous stream of anxiety about anything. It doesn't let up. It's always there in the background, despite how much I focus on busying myself trying to forget.

I find my days at work are probably the worst. I spend so much energy trying to focus on concentrating on my work tasks and so much effort trying to just keep it together emotionally that when I get home the wheels fall off. I end up having a big melt-down. It is usually fairly short-lived but it's intense and draining and there are lots of tears. Today was especially hard as I start the treatment next week and there was an extra sense of anxiousness and anticipation. Almost like when you finish up work before going on a holiday, just not as fun and exciting! Plus, I had a number of moments scattered throughout the day where someone had gone to the trouble to do something kind for me or my family. A thoughtful card. A Good Luck balloon. A care package. A kind word. A hug. Experiencing people's generosity and kindness is also a sure-fire way to have me come undone!!

I think the other thing about my treatment is that I've been told that the effects are accumulative. Meaning that for the first week or two I probably won't be experiencing anything much. I think Monday, especially as the first day, will be fairly anti-climactic. The emotional build up towards starting the treatment coupled with the lack of feeling anything during the treatment I think will result in feeling a bit 'lost' afterwards.

I liken it to the build up before Christmas. Inevitably there is a lull after the flurry of activity. You know, all the stores have Christmas stuff in stock for months beforehand. There's gift buying, meal planning, and decorating to be done. The Christmas Pageant is this weekend. Christmas day will come, we will share with each other around beautifully adorned trees and eat way too much from heavy laden tables. After weeks, maybe even months, of planning the day will come and go before we know it. We turn to each other from amidst the scraps of torn wrapping paper and left over turkey and wonder what to do with ourselves!

Monday is going to be just like that I think...just not as fun.








Tuesday 6 November 2012

Weary

As the days go by and we move closer towards radiotherapy, both Steve and I are feeling all the more apprehensive. Despite the specialists going into all of the details explaining what side effects to expect, we still really don't know to what degree I'll be effected or just how I'm going to cope with this treatment. So there is still anxiousness at the unknown.

On top of the anxiety about my cancer and treatment, life just keeps going on. There are still the all the normal things that have to happen. The laundry, cooking, cleaning, running the boys to school or sport, changing nappies, going to work, helping with homework (oh, how I loathe homework at the moment!), cleaning up after the cat (she seems to sense when we are well and truly exhausted and then she misses the litter box, just to see us mop the floor once more??! Augh!!!) The list just keeps going on! And while it's helpful, at the moment, to distract ourselves with the busyness of everyday life, it's also very tiring. We get to the end of the day and collapse in a heap on the bed, physically exhausted and emotionally drained, only to find that sleep is elusive.






Friday 2 November 2012

The details...what they've told me

They've told me...
...I have a rare cancer of the salivary gland.
...there's little information about it.
...they haven't actually come across it too often here.
...the margins weren't clear after surgery.
...it doesn't spread via the lymphatic system.
...it spreads through the nervous system.
...it doesn't respond to chemotherapy.
...they'll need to give me a hefty dose of radiotherapy.
...my skin will look like its been badly sunburnt.
...I'll lose my sense of taste.
...the inside of my mouth will ulcerate.
...my mouth will become dry, permanently.
...I'll lose a patch of hair from the back of my head, permanently.
...they'll give me plenty of medication to manage the pain.
...I can't wear any make up during treatment.
...I'll be fatigued.
...it's called Adenoid Cystic Carcinoma.