Out It Comes

All this week I have been trying to transition from using the feeding tube to taking stuff orally.  It has been a pretty tough week.  I didn't anticipate that my tongue would forget how to move foods and liquids from the front of my mouth to the back and swallow it.  It's amazing, really, how quickly I, and my body, got used to taking everything through the tube.

I started by drinking water.  Easy.  No worries.  By Tuesday night I was feeling pretty cocky and good about things so I tried to have some mashed potato and gravy.  No good.  Disappointed.  ~ This whole process seems to have taken such a long time.  I feel like I'm so close to my old self yet so far away.  It's deceptive, too, with my skin clearing up and healing so incredibly quickly.  It doesn't reflect the deep tissue damage that is still within my mouth, tongue and throat.  ~

Not wanting to be defeated, I thought back to the last real food I'd had, and decided to try some scrambled eggs at dinner time last night.  Success!  I had to numb my mouth with the local anaesthetic first and went really slowly but I did manage to eat 3/4 of my plate of eggs!  Super happy with myself!

All this effort to get stuff in my mouth has been leading up to today's appointment at the hospital with the Oncologist and the Dietician.  At my last appointment they had talked about the possibility of being able to remove the feeding tube.  ~ I'll just add here that as much as I wanted it out there was a part of me that was afraid to get it out.  Especially as it still hurts to put things in my mouth and once the tubes out there's no easy options. ~

This morning's appointment went really well. The Oncologist was really please with how my skin had healed.  He commented that the deep tissue damage of the mouth, tongue, and throat were also healing well but they'll take a lot longer before they match the outside.  ~ Quite deceptive really.  While people may think I'm doing really well, and to a point I am, I have a long healing journey ahead of me still.  ~ 

So with the news that all is going well and after being able to share with the doctor and dietician how my week of orally feeding myself had gone, the decision to remove the feeding tube was made!  Hooray!!  The next bit was a bit erky though.  The bold yellow tube going into my nose did not come out of my stomach and nose that same colour.  The contents of my stomach had turned it a yucky black colour and as it came out all I wanted to do was vomit.  Have to say I'm really pleased I didn't!

Even though the tube is now out and I'm looking like my old self again, I'm not there yet.  I'm still on a liquid diet as "real food" is still too much to cope with.  I have a few more weeks of drinking Ensure Plus, Sustagen, and soup before I'll be ready to take solid food. The other main detractor to "real food" is my dry mouth. Now that most of my salivary glands have been fried beyond belief by the radiation, and will not ever recover, I don't have enough saliva. I'm grateful to the products that are available to help in this department but I'm still mentally struggling with using fake spit!  I'll have to get used to the idea soon though, as I'll have to use it for the rest of my life.

As this next few weeks roll on I'll continue to try and increase what I can take orally. I'll also continue to wind back the Morphine as my pain levels drop. Once I can get off of the heavy pain medications I can start to think about returning to work and returning to normal. A new normal.

Progress

I'm feeling quite spritely and happy this week!  I am slowly feeling a little bit more human.  I managed to drink an entire vanilla milkshake this week!  I know, right, totally amazing!  I still couldn't taste it, which was sad, but I was able to slowly drink it.  Progress!

As things start to return to normal I'm filled with an interesting blend of excitement but also a little trepidation.

Excitement, as all those things I've missed doing are getting closer to returning.  Eating and drinking!  I can't tell you how much I've missed just sitting down in the morning with a nice cup of coffee.  I can't wait to have the feeding tube removed.  I've lost a reasonable amount of weight (much to the dietician's annoyance, but hey, I am now fitting into pre-baby clothes...actually, I'm now getting into pre-other-babies-who-are-now-11-and-13-clothes! There's got to be an upside) I'm hoping that once I return to eating real food that that weight doesn't come back.  I'm also curious, thanks to my 13 year old, whether my taste buds will like the same food as before.  I'm looking forward to getting back into my kitchen to bake up a storm with my cookies.  I'm looking forward to driving again.  To going out with my girlfriends...having our girls' nights' out.  Even to doing regular things like cleaning the house again.  A big thank you to my parents for doing it for us at the moment!

Trepidation, as I hope the treatment was successful.  It seems wrong, I know, to think so negatively, but I am almost a bit scared to hope for the best.  I don't want to jinx it.  But given what they've told me of the nature of the cancer, I'm almost a little hesitant to say I'm cancer free.  Please don't misunderstand me here, I'm certainly remaining positive, I'd be lying if I said I was all the time though. Really, these are just those little niggles in the deep, dark recesses in the back of the mind. They usually only surface in the middle of the night when you can't sleep. You know how those thoughts work.

Happy New Year

It has been just over a week since my last treatment.  I've been back to the hospital to see the Doctor and the Dietician.  I'm thrilled to say that our conversations have now moved from how to manage pain, feeding, and weight, to how I will be reducing my medications and starting foods orally again!  I'm still on a hefty dose of morphine, and will be for at least another week before we start to decrease the dosage.  Even though the treatments have stopped the effects have still continued.  My skin is looking amazing, it has very quickly gone from raw wounds to now just looking like a sunburn.  It's even flaking and peeling like a sunburn!  My mouth, however, continued to get ulcers this week and has still been so incredibly sore.  Particularly in the morning before I've had my medications.  I'm still thankful that they are fast acting!

I'm now down to weekly visits to see the Doctor and fortnightly visits to the Dietician.  I'm done with the radiotherapy treatments. Does that mean I can say that I'm cancer free? In remission?  I have to have a scan in approximately four weeks' time where they will check to see the effectiveness of the treatment.  I don't want to even think on it, really, because the "what if's" scare me. 

So from this point on my focus is going to be one of positive healing!  I have so much I want to do this year and it all depends on me getting healthy.

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.

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.

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.

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!