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.




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.


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!


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.