It won't really be good bye. I will still be heading back in to the RAH later this week to see the Dietician again and to see the oncologist. Plus, from this point onwards I now have weekly checks with them to monitor how I'm going. The frequency of these check ups will change and get further apart as I progress in my healing.
Monday 24 December 2012
It is done!
It is done! Christmas Eve and it's all done. I had my final treatment this afternoon. I can't begin to tell you the relief I felt at finally finishing! You know the strangest thing happened though. I cried. Certainly tears of joy, don't get me wrong! I'm so joyful right now to be done with this phase. But there were also tears of sadness. Over the past seven weeks, going into the hospital every day, I have gotten to know so many wonderful people that work in the Oncology department. Beautiful souls that make it so much easier to bear the pain, the discomfort, the drudgery, and the fear of daily treatments. There were plenty of hugs and tears today as I said thank you and good bye.
It won't really be good bye. I will still be heading back in to the RAH later this week to see the Dietician again and to see the oncologist. Plus, from this point onwards I now have weekly checks with them to monitor how I'm going. The frequency of these check ups will change and get further apart as I progress in my healing.
It won't really be good bye. I will still be heading back in to the RAH later this week to see the Dietician again and to see the oncologist. Plus, from this point onwards I now have weekly checks with them to monitor how I'm going. The frequency of these check ups will change and get further apart as I progress in my healing.
Saturday 22 December 2012
Week Six
Sorry it's been a while since I've posted anything. I'm finding the fatigue is a real problem now. I often sit down to the keyboard only to almost immediately drift off. I hope you've all still been following my progress through my husband's blog, Views From The Passenger Seat
Week six did not start as I expected but it is looking like it will end better than we all expected!
Monday was a day of tears.
Firstly, tears over the incredible generosity we received from Steve's work colleagues. They presented us with an enormous Christmas food hamper and also raised so much money for our little family, "so you can spoil the boys and each other and really enjoy Christmas together." What a real privilege it is to be the recipient of such love and kindness. I really don't feel that saying, "Thank you", was anywhere near enough to express our gratitude for all they have done for us.
Secondly, tears over my time at the hospital in the afternoon. We arrived for my treatment with me shivering. Seems I had developed a fever so the Doctor said no treatment that day. I spent the next hour being gently cleaned up by the lovely nurse Stacey. She removed all the muck from my neck (eww! I don't know if I could do her job) and redressed it with more purple stuff. I was so disappointed at having to have that break in my treatment. They wanted to admit me as an inpatient but I really didn't want to do that. I just wanted to be home with my family. So there was a huge sigh of relief when they allowed me a compromise. They wouldn't admit me if I went straight home and into bed. Strict orders to do nothing but rest and take Panadol every four hours to ensure that fever dropped. By 9pm it had thankfully gone and I was feeling back to 'normal'.
My side effects are so severe that it's been "touch'n'go" all week as to whether or not I am admitted into hospital, and whether or not the treatment would go ahead each day. My throat and mouth continue to be ulcerated with new ulcers now on the end of my tongue feeling particularly sore. I also have new sores on my lips, despite constantly using the balm. My neck is raw and purple! My right ear has sores on it now, I can't wear my earrings and I think the holes have closed over.
We got a phone call from the Dr last night, all the way from his family holiday overseas! He was ringing to check on how I was going and to say he'd received an update about my condition from the Consultant and Registrar back here. They had informed him of our meeting yesterday where we had discussed my treatment options. He wanted to reassure me that what was presented to me was a very good option and that I really didn't need to worry about anything. The Consultant and Registrar had both suggested that as I was having a heightened sensitivity to the treatment and was reacting so severely that the cancer cells must also be effected severely (as they had originally come from my cells). The advise was to stop the treatment early, have 30 fractions rather than 33. They were confident that it wouldn't be compromising the long term treatment of the cancer but it would be a great compromise for the side effects. I was informed that the ulceration inside my mouth and the rawness of the wounds on my neck were at a stage that if we didn't stop I would be experiencing severe problems there for the rest of my life. So my last treatment is now Monday 24th December, Christmas Eve.
The week was also overshadowed by my youngest son and an operation he was scheduled to have on Tuesday to repair his hypospadias (Google it!). The surgery went well but understandably he was miserable Tuesday night and both Steve and I got very little sleep. The rest of his week has ebbed and flowed with him perking up by Thursday but then developing a fever and ending up at the Women's and Children's Hospital on Friday. Now we are administering antibiotics twice a day and Panadol every 6 hours. Of course, the antibiotics come with their own set of side effects and they are in turn making him more miserable. My parents have been an invaluable addition to our household this week, doing most of our household chores and helping Steve to look after Nate. Poor baby doesn't want to be put down much and just wants cuddles, especially when he needs to urinate. Steve is doing an amazing job looking after all three of our boys, particularly given he has had so little sleep this week.
I'm glad to see the end of this week and am really looking forward to moving into the next week. It will bring with it the next phase of healing for both myself and Nate. Plus it will bring Christmas. I really want to celebrate and make this a great day.
Week six did not start as I expected but it is looking like it will end better than we all expected!
Monday was a day of tears.
Firstly, tears over the incredible generosity we received from Steve's work colleagues. They presented us with an enormous Christmas food hamper and also raised so much money for our little family, "so you can spoil the boys and each other and really enjoy Christmas together." What a real privilege it is to be the recipient of such love and kindness. I really don't feel that saying, "Thank you", was anywhere near enough to express our gratitude for all they have done for us.
Secondly, tears over my time at the hospital in the afternoon. We arrived for my treatment with me shivering. Seems I had developed a fever so the Doctor said no treatment that day. I spent the next hour being gently cleaned up by the lovely nurse Stacey. She removed all the muck from my neck (eww! I don't know if I could do her job) and redressed it with more purple stuff. I was so disappointed at having to have that break in my treatment. They wanted to admit me as an inpatient but I really didn't want to do that. I just wanted to be home with my family. So there was a huge sigh of relief when they allowed me a compromise. They wouldn't admit me if I went straight home and into bed. Strict orders to do nothing but rest and take Panadol every four hours to ensure that fever dropped. By 9pm it had thankfully gone and I was feeling back to 'normal'.
My side effects are so severe that it's been "touch'n'go" all week as to whether or not I am admitted into hospital, and whether or not the treatment would go ahead each day. My throat and mouth continue to be ulcerated with new ulcers now on the end of my tongue feeling particularly sore. I also have new sores on my lips, despite constantly using the balm. My neck is raw and purple! My right ear has sores on it now, I can't wear my earrings and I think the holes have closed over.
We got a phone call from the Dr last night, all the way from his family holiday overseas! He was ringing to check on how I was going and to say he'd received an update about my condition from the Consultant and Registrar back here. They had informed him of our meeting yesterday where we had discussed my treatment options. He wanted to reassure me that what was presented to me was a very good option and that I really didn't need to worry about anything. The Consultant and Registrar had both suggested that as I was having a heightened sensitivity to the treatment and was reacting so severely that the cancer cells must also be effected severely (as they had originally come from my cells). The advise was to stop the treatment early, have 30 fractions rather than 33. They were confident that it wouldn't be compromising the long term treatment of the cancer but it would be a great compromise for the side effects. I was informed that the ulceration inside my mouth and the rawness of the wounds on my neck were at a stage that if we didn't stop I would be experiencing severe problems there for the rest of my life. So my last treatment is now Monday 24th December, Christmas Eve.
The week was also overshadowed by my youngest son and an operation he was scheduled to have on Tuesday to repair his hypospadias (Google it!). The surgery went well but understandably he was miserable Tuesday night and both Steve and I got very little sleep. The rest of his week has ebbed and flowed with him perking up by Thursday but then developing a fever and ending up at the Women's and Children's Hospital on Friday. Now we are administering antibiotics twice a day and Panadol every 6 hours. Of course, the antibiotics come with their own set of side effects and they are in turn making him more miserable. My parents have been an invaluable addition to our household this week, doing most of our household chores and helping Steve to look after Nate. Poor baby doesn't want to be put down much and just wants cuddles, especially when he needs to urinate. Steve is doing an amazing job looking after all three of our boys, particularly given he has had so little sleep this week.
I'm glad to see the end of this week and am really looking forward to moving into the next week. It will bring with it the next phase of healing for both myself and Nate. Plus it will bring Christmas. I really want to celebrate and make this a great day.
Thursday 13 December 2012
Purple
Week 5 is done! This week it has been touch and go all week as to whether or not the treatment would even go ahead. The doctors have been concerned due to the severity of my reactions to the treatment and have been assessing it every day. At the beginning of the week there was discussion about possibly pausing the treatment for the week to allow my body to heal. As the week progressed though and the burning and ulcers in my mouth didn't appear to be getting much worse the discussions changed to suggest only a few days down to maybe just Friday be a rest day. In the end I've been able to withstand it all week and starting Monday the treatment area will be reducing down to focus just on the primary cancer site. I feel so happy about having been able to keep going! Now there are only 8 more treatments to go! 8!
You know how some mornings when you wake up, you stumble to the bathroom and you go to look at yourself in the mirror and you see that your face is missing? Well, I actually had that happen this week. I got up yesterday morning and found half my face on the pillowslip. I know, I can hear you saying, "Karen, stop, that's just nasty!" My skin on my neck and chin, as you know, is burnt. It has now started peeling and weeping. In some spots it is also bleeding. After treatment today I had a very lovely nurse gently, oh so gently, clean it all up before she applied some stuff to help it heal quickly and to dry out the weepy spots. Some Crystal Violet (Gentian Violet). The only draw back is that it's purple. (Check out my picture page!) Now some of you that know me well will know that purple is a favourite colour of mine, but really, even this is pushing it! We've tried a few different dressing options too but it's such a tricky area to dress I've just left it au naturale.
So as week 5 finishes and week 6 approaches there are new challenges, hurdles, and yes, positives. I have found the feeding tube to be the best decision made. It has made drinking my cans and taking all the medications so much easier. The pain in my mouth and throat has continued to worsen however the morphine dosage has been adjusted accordingly. My skin is so burnt and sore but is also being well looked after.
We farewell my mother in law this weekend. She has been at our home for the last 5 weeks, helping to look after the boys, and doing general household cleaning. As she goes my folks arrive. They've booked into the caravan park around the corner from us until the end of January. I'm really looking forward to spending time with them and having them around to help us out. They are both very practical people so I have no doubt the boys and I will be well cared for once Steve has to head back to work early in the new year.
Wednesday 12 December 2012
The Feeding Tube
I haven't posted anything for a while because, understandably, I'm pretty exhausted by the end of the day!
Our days are busy with my treatment and appointments to see the doctor, dietician, nursing staff, and the dentist. A good proportion of our day is taken up just with our time at the hospital or dental hospital. Feeds, medications, and resting generally take up the rest of the day.
The treatment is still progressing well. I've been seeing the doctor each day to assess whether or not I can keep going on with the planned treatment schedule. As this planned schedule has only two more days of treating the broader area before reducing down to treat only the primary cancer site, I'm hopeful that I can continue on. It has been borderline all week whether or not they postpone the treatment to allow my body to heal a little before resuming a week later. You might recall a comment in an earlier post where they were trying to balance the need to treat me without killing me in the process. Seems I may be dancing close to serious. But my preference is to keep going while I can still manage it. Based on what little we know of this cancer, I feel like this is a one shot opportunity and don't want to compromise my long term outlook.
So now I have a feeding tube in. I hadn't liked the idea of the feeding tube and wanted to just persevere without it if possible. Last Friday evening, though, it had gotten so painful to swallow even just water that I was in tears knowing that I would need to get the feeding tube. I spent the weekend barely able to drink anything and ended up loosing two kilos in two days! Monday morning the dietician arranged for the tube to go in. We got a detailed explanation of how to care for the tube and how to use the tube, plus cleaning and caring for the tube. It sounded overwhelming but now that I've had it in for a few days its actually surprisingly easy to use. And, most importantly, I can have my tinned formula without any pain.
Someone asked me today how the boys are coping with it all. They seem to be coping really well. Ryan has been a terrific encourager, giving lots of hugs and thoughtfully asking about very specific aspects of my treatment. He was initially concerned when he saw the tube. He wanted to know if it hurt at all and was visibly bouyed when I was able to tell him, no, it just feels weird. Matt has been great too, very loving and cuddly. When Matt saw the tube his comment was, now how am I supposed to kiss you? When I replied he could still kiss me on the other side he came over, kissed and hugged me and let out a loud, Phew! Nate seems to be okay for the most part. I can't hold him as I'd like too in case he pulls the tube out. His routine is completely out of whack now that we've been out and about during the day and he's not getting his lunch, sleeps or bottle at the usual times. Unfortunately, he's been waking up overnight too, about 2:30 each night and poor Steve is struggling to get him to resettle. He even put my dressing gown on the other night hoping that Nate might think it was me. After initially cuddling in he pulled back with a puzzled look at Steve before nuzzling in again. Hopefully he will get a full and good night tonight! I just really want to see Steve have a good night sleep too!
Our days are busy with my treatment and appointments to see the doctor, dietician, nursing staff, and the dentist. A good proportion of our day is taken up just with our time at the hospital or dental hospital. Feeds, medications, and resting generally take up the rest of the day.
The treatment is still progressing well. I've been seeing the doctor each day to assess whether or not I can keep going on with the planned treatment schedule. As this planned schedule has only two more days of treating the broader area before reducing down to treat only the primary cancer site, I'm hopeful that I can continue on. It has been borderline all week whether or not they postpone the treatment to allow my body to heal a little before resuming a week later. You might recall a comment in an earlier post where they were trying to balance the need to treat me without killing me in the process. Seems I may be dancing close to serious. But my preference is to keep going while I can still manage it. Based on what little we know of this cancer, I feel like this is a one shot opportunity and don't want to compromise my long term outlook.
So now I have a feeding tube in. I hadn't liked the idea of the feeding tube and wanted to just persevere without it if possible. Last Friday evening, though, it had gotten so painful to swallow even just water that I was in tears knowing that I would need to get the feeding tube. I spent the weekend barely able to drink anything and ended up loosing two kilos in two days! Monday morning the dietician arranged for the tube to go in. We got a detailed explanation of how to care for the tube and how to use the tube, plus cleaning and caring for the tube. It sounded overwhelming but now that I've had it in for a few days its actually surprisingly easy to use. And, most importantly, I can have my tinned formula without any pain.
Someone asked me today how the boys are coping with it all. They seem to be coping really well. Ryan has been a terrific encourager, giving lots of hugs and thoughtfully asking about very specific aspects of my treatment. He was initially concerned when he saw the tube. He wanted to know if it hurt at all and was visibly bouyed when I was able to tell him, no, it just feels weird. Matt has been great too, very loving and cuddly. When Matt saw the tube his comment was, now how am I supposed to kiss you? When I replied he could still kiss me on the other side he came over, kissed and hugged me and let out a loud, Phew! Nate seems to be okay for the most part. I can't hold him as I'd like too in case he pulls the tube out. His routine is completely out of whack now that we've been out and about during the day and he's not getting his lunch, sleeps or bottle at the usual times. Unfortunately, he's been waking up overnight too, about 2:30 each night and poor Steve is struggling to get him to resettle. He even put my dressing gown on the other night hoping that Nate might think it was me. After initially cuddling in he pulled back with a puzzled look at Steve before nuzzling in again. Hopefully he will get a full and good night tonight! I just really want to see Steve have a good night sleep too!
Thursday 6 December 2012
Half Way!
This is going to be brief. Primarily because I'm just plain out exhausted. I think the fatigue they talked about is starting to hit me. I find myself at moments during the day where I can barely keep my eyes open.
Well, I have just passed the half-way point in my treatment! [*trumpets*streamers*fanfare*] I saw the oncologist again yesterday morning and he is still concerned about how I'm handling the treatment. It's a balancing act to make sure the treatment is strong enough to do the job but not so aggressive that it kills me in the process. True story! The first couple of times he said it I thought maybe the Dr was kidding. It's a bit of a scary thought that this treatment that is supposed to save my life can also cause the end of it. Anyway, at this stage the treatment is going to continue on so I guess that's a good sign. The oncologist is heading overseas to India to spend Christmas with his family so I will have the registrar keeping an eye on me for the next few weeks. Although, the Dr did give us his email address, which he said he doesn't normally do, so we can keep him informed of my progress while he's away plus he said he'd call the hospital periodically to check too. This afternoon after I'd finished my treatment while I was waiting to get some more medicine from the nurses station, one of the nurses came to tell me I had a phone call . . . ? It was the Dr calling me from the airport to see if there were any changes from yesterday! WOW! Now that's going above and beyond.
It's such an encouragement to have the Dr keeping that close an eye on me but by the same token, it freaks me out. If he's watching me that closely, then like I said above, it may be that this is a lot more serious than I realised and a lot more touch and go. Well, apart from being more tired and now feeling more ulcers down my throat when I swallow, I believe I'm going well.
Well, I have just passed the half-way point in my treatment! [*trumpets*streamers*fanfare*] I saw the oncologist again yesterday morning and he is still concerned about how I'm handling the treatment. It's a balancing act to make sure the treatment is strong enough to do the job but not so aggressive that it kills me in the process. True story! The first couple of times he said it I thought maybe the Dr was kidding. It's a bit of a scary thought that this treatment that is supposed to save my life can also cause the end of it. Anyway, at this stage the treatment is going to continue on so I guess that's a good sign. The oncologist is heading overseas to India to spend Christmas with his family so I will have the registrar keeping an eye on me for the next few weeks. Although, the Dr did give us his email address, which he said he doesn't normally do, so we can keep him informed of my progress while he's away plus he said he'd call the hospital periodically to check too. This afternoon after I'd finished my treatment while I was waiting to get some more medicine from the nurses station, one of the nurses came to tell me I had a phone call . . . ? It was the Dr calling me from the airport to see if there were any changes from yesterday! WOW! Now that's going above and beyond.
It's such an encouragement to have the Dr keeping that close an eye on me but by the same token, it freaks me out. If he's watching me that closely, then like I said above, it may be that this is a lot more serious than I realised and a lot more touch and go. Well, apart from being more tired and now feeling more ulcers down my throat when I swallow, I believe I'm going well.
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!
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.
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.
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.
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!
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.
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.
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.
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.
...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.
Tuesday 30 October 2012
The details...it's cancer
I don't quite know why my mind keeps going back to this, but I keep remembering how bad I felt for the doctor who told me it was cancer. She was one of the more junior surgeons. She had taken a look at my scar, talked to me about the droop of my lip, and then she brought up the pathology report on the computer. She left the room for what seemed ages to "just speak to the senior surgeon". Which had happened at several previous appointments, so no alarm bells were ringing yet! Steve and I sat there waiting, laughing about something. I can't even remember what. Knowing us, it was no doubt something inane and completely silly! Both doctors came back and she sat back down in front of the computer and just said, "It's not good. It's cancer." Oh my goodness, even just typing that makes me feel sick all over again. That rush of adrenalin. That numb sensation that just washed over me. The thought that I surely just misheard her. And then, crazily, how horrible it must be to have to tell someone that. Like it wasn't even me who was being told!
The senior surgeon went on to tell me that my case would be sent to the specialists at the Royal Adelaide Hospital where it would be reviewed at a Multi-Disciplinary meeting. He said there may be more surgery, radiotherapy, chemotherapy or a combination of any of those. He said they don't often come across cancer of the salivary gland so he couldn't tell me more than that.
Steve and I walked out in a fog of emotion and just sat in the car for ages. We drove home in silence. Telling Ryan and Matt was worse than being told it was cancer in the first place. We all sat on the couch hugging and crying. I'm really not sure how long I sat there with my boys like that. I don't think I can ever recall a time when I've experienced such intense emotional pain. I've been through some really hard and challenging times in my life, but this, this was excruciating.
I have to remain strong. Strong for Steve. Strong for my boys.
The senior surgeon went on to tell me that my case would be sent to the specialists at the Royal Adelaide Hospital where it would be reviewed at a Multi-Disciplinary meeting. He said there may be more surgery, radiotherapy, chemotherapy or a combination of any of those. He said they don't often come across cancer of the salivary gland so he couldn't tell me more than that.
Steve and I walked out in a fog of emotion and just sat in the car for ages. We drove home in silence. Telling Ryan and Matt was worse than being told it was cancer in the first place. We all sat on the couch hugging and crying. I'm really not sure how long I sat there with my boys like that. I don't think I can ever recall a time when I've experienced such intense emotional pain. I've been through some really hard and challenging times in my life, but this, this was excruciating.
I have to remain strong. Strong for Steve. Strong for my boys.
The details...the lead up
I've just had a thought....I haven't mentioned any of the details...I think maybe its because the details actually scare me. Let me start with the lead up to the details as that's less scary!
I've had a lump in my neck for ages. 15 years actually. It started as quite a small and painless lump. Maybe about the size of a pea or smaller. My doctor had said that it was very common to have slightly enlarged glands after an infection or glandular fever so I never really worried about it. The lump slowly grew and in the last 18 months the rate of growth really sped up and the lump was causing a bit of pain throughout my jaw, cheek and neck. At this stage it felt like it was about the size of a walnut.
After Nate was born in October last year I thought I should get it checked out. The pain had become a constant presence. After the lump didn't respond to a course of antibiotics my GP sent me off to see an ENT surgeon. I had ultrasound scans followed by CT scans. They thought it might be a blocked duct. Although no blockage was evident in any of the scans they didn't seem to be concerned and told me it was very common to have an infection or a small stone, like a kidney stone, in the duct. More antibiotics were prescribed to specifically target the infection they thought was causing the blockage. Still no change. The ENT suggested a procedure needed to be done to clear the duct. He would go in through the duct under my tongue with a tiny tube and camera to clear the duct. That was done back in May this year. I distinctly remember waking up from the surgery and feeling the lump in my neck still and my heart sinking. The ENT had said this procedure was successful in about 80% of patients and the other alternative was to remove the gland. I didn't really want that to happen as I, rather vainly, didn't want a great big whopping scar on my neck! More antibiotics were prescribed. I might just throw it in here that I don't react well with antibiotics so I was a bit annoyed at having five rounds of them! Of course, that didn't work and so surgery to remove the gland was scheduled.
The actual surgery itself went well. I did have a few issues with nausea afterward which meant instead of just one night in hospital I spent two. The surgeon commented that the gland was bigger than we first thought, about the size of a kiwi fruit (why the reference to fruit I'll never know, don't think I can bring myself to eat them again without feeling a little sick!) and it was quite hard and was very much embedded in my jaw. There was still no suggestion of anything more sinister than just a non-functioning, infected gland. I was disappointed at the size of the incision (you can see it on my pictures page) and also concerned about some droop on the right hand side of my lip. A little bit like I'd had a mild stroke. The doctors felt it was just due to the nerves being squished with the swelling and would right itself within about six weeks.
A follow up appointment to remove the stitches and check on that droop was made for a week after the surgery. The stitches came out well and the surgeon was impressed with his handy-work (as they so often are!!) and felt it was healing very well. He also felt there was a very slight improvement with the droop but would check it again a week later. The pathology results weren't back yet, which they weren't concerned about, just a matter of routine.
That following appointment has become a blur. I still feel nauseous whenever I remember the doctor telling us that it wasn't good, that it was cancer. We didn't find out then what sort of cancer but we did find out the margins weren't clear and there might be more surgery. They told us that my case would be referred to the specialists at the Royal Adelaide Hospital where it would be reviewed in a Multi-Disciplinary Meeting. I had another CT scan scheduled to check for evidence of the cancer spreading. The waiting to find out more was horrible. I lost over five kilos in a week and my GP prescribed tablets to help me sleep.
.......on to more of the details.....
I've had a lump in my neck for ages. 15 years actually. It started as quite a small and painless lump. Maybe about the size of a pea or smaller. My doctor had said that it was very common to have slightly enlarged glands after an infection or glandular fever so I never really worried about it. The lump slowly grew and in the last 18 months the rate of growth really sped up and the lump was causing a bit of pain throughout my jaw, cheek and neck. At this stage it felt like it was about the size of a walnut.
After Nate was born in October last year I thought I should get it checked out. The pain had become a constant presence. After the lump didn't respond to a course of antibiotics my GP sent me off to see an ENT surgeon. I had ultrasound scans followed by CT scans. They thought it might be a blocked duct. Although no blockage was evident in any of the scans they didn't seem to be concerned and told me it was very common to have an infection or a small stone, like a kidney stone, in the duct. More antibiotics were prescribed to specifically target the infection they thought was causing the blockage. Still no change. The ENT suggested a procedure needed to be done to clear the duct. He would go in through the duct under my tongue with a tiny tube and camera to clear the duct. That was done back in May this year. I distinctly remember waking up from the surgery and feeling the lump in my neck still and my heart sinking. The ENT had said this procedure was successful in about 80% of patients and the other alternative was to remove the gland. I didn't really want that to happen as I, rather vainly, didn't want a great big whopping scar on my neck! More antibiotics were prescribed. I might just throw it in here that I don't react well with antibiotics so I was a bit annoyed at having five rounds of them! Of course, that didn't work and so surgery to remove the gland was scheduled.
The actual surgery itself went well. I did have a few issues with nausea afterward which meant instead of just one night in hospital I spent two. The surgeon commented that the gland was bigger than we first thought, about the size of a kiwi fruit (why the reference to fruit I'll never know, don't think I can bring myself to eat them again without feeling a little sick!) and it was quite hard and was very much embedded in my jaw. There was still no suggestion of anything more sinister than just a non-functioning, infected gland. I was disappointed at the size of the incision (you can see it on my pictures page) and also concerned about some droop on the right hand side of my lip. A little bit like I'd had a mild stroke. The doctors felt it was just due to the nerves being squished with the swelling and would right itself within about six weeks.
A follow up appointment to remove the stitches and check on that droop was made for a week after the surgery. The stitches came out well and the surgeon was impressed with his handy-work (as they so often are!!) and felt it was healing very well. He also felt there was a very slight improvement with the droop but would check it again a week later. The pathology results weren't back yet, which they weren't concerned about, just a matter of routine.
That following appointment has become a blur. I still feel nauseous whenever I remember the doctor telling us that it wasn't good, that it was cancer. We didn't find out then what sort of cancer but we did find out the margins weren't clear and there might be more surgery. They told us that my case would be referred to the specialists at the Royal Adelaide Hospital where it would be reviewed in a Multi-Disciplinary Meeting. I had another CT scan scheduled to check for evidence of the cancer spreading. The waiting to find out more was horrible. I lost over five kilos in a week and my GP prescribed tablets to help me sleep.
.......on to more of the details.....
Monday 29 October 2012
Emotions
The rollercoaster of emotions over the last few weeks is taking its toll on both Steve and myself. I'm really not sure how to feel, what to say, or what to think. I fluctuate between a distracted calmness, to anger, to tears and fear. I want to cling firmly to the optimistic hope of beating this cancer, of being one of the positive statistics. So often, though I find myself thinking on the reality that is lying out before me.
I was talking to someone earlier this week who has also battled cancer, breast cancer. She commented how she had been afraid to hope for the best for fear that it wouldn't happen, but also afraid to think about the worst case scenario for fear of making it happen. How much of our thinking really influences our health? I'm really not certain. They say laughter is the best medicine. What if even a smile is hard to muster up?
I was talking to someone earlier this week who has also battled cancer, breast cancer. She commented how she had been afraid to hope for the best for fear that it wouldn't happen, but also afraid to think about the worst case scenario for fear of making it happen. How much of our thinking really influences our health? I'm really not certain. They say laughter is the best medicine. What if even a smile is hard to muster up?
Thursday 25 October 2012
Waiting....
I'm tired of waiting. It's exhausting.
We waited for what seemed like eons in the hospital waiting room only to be moved to another waiting area (really, it was just a corridor!) before being moved into another little room to wait even longer to see the doctor.
After what she told me in that little room I know I will now get very used to waiting rooms.
Three weeks ago today she told me I have cancer.
Then there was more waiting.
Waiting to get results of a CT scan to see if there was any evidence of the cancer having spread.
Waiting for the specialists at the Royal Adelaide Hospital to have their Multi-Disciplinary-Meeting where they would discuss my case and determine the best course of action.
Waiting to find out the result of that meeting.
Waiting to see the Oncologist.
Now waiting to start treatment.
Three weeks seems to have been a very long time but at the same time it has gone by so quickly. I'm now so very aware that time goes by all too quickly.
We waited for what seemed like eons in the hospital waiting room only to be moved to another waiting area (really, it was just a corridor!) before being moved into another little room to wait even longer to see the doctor.
After what she told me in that little room I know I will now get very used to waiting rooms.
Three weeks ago today she told me I have cancer.
Then there was more waiting.
Waiting to get results of a CT scan to see if there was any evidence of the cancer having spread.
Waiting for the specialists at the Royal Adelaide Hospital to have their Multi-Disciplinary-Meeting where they would discuss my case and determine the best course of action.
Waiting to find out the result of that meeting.
Waiting to see the Oncologist.
Now waiting to start treatment.
Three weeks seems to have been a very long time but at the same time it has gone by so quickly. I'm now so very aware that time goes by all too quickly.
Friday 13 July 2012
The start of a long journey
I've been thinking about how we make plans. You know, before you go on a holiday. Perhaps you make plans to get the car serviced beforehand, knowing it has to perform well for the long road trip. Maybe it's plans to take out travel insurance to protect against your luggage ending up at a different location to you. Write a list of what clothes to pack depending on the weather. A budget of how much spending money for each day. An itinerary of where you plan to visit and the sights you really want to see.
I wonder about the journey I'm about to embark on and what plans I should be making.
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