Resolution - a decision made

Deciding whether or not to have radiation was one of the hardest decisions I have ever had to make. I was in real turmoil and thankfully I made my mind up within 4 days.

Day 1: Christmas Eve was the day I found out about the possible side effects of radiation. As much as many of the side effects are nasty, they are temporary. However I found that there was a possible permanent side effect of losing my hearing which absolutely terrified me. I had read of 3 ACC patients that had lost various degrees of hearing permanently. This is a lot when you consider that this extremely rare cancer (4 in a million are diagnosed with ACC) and there really isn't that much data or statistics to support the real ratio of side effects. I am already profoundly deaf. I know the isolation that deafness brings. I didn't want it to be worst. It changes EVERY relationship you have.

Day 2 was Christmas Day and with a extended family Christmas party, hosted by my son and his wife thankfully, I really didn’t have much time to dwell on decision making even though I couldn’t nap at all as every time I had any quiet time, my mind was in overdrive and in panic mode.

Day 3 was Boxing Day which was a day of hell for me, mainly because I had nothing to do but ‘rest and recover’ from the previous day’s festivities. This gave me far too much time to dwell, to think, to obsess, to cry, to pray and to cry again. It was another day when I couldn’t nap when I so desperately needed it. I was overtired and stressed out. Every time I tried to be rational and logical, the fear just took over.

Day 4 was our own intimate family Christmas party when 3 of my 4 kids were here and their families. Somewhere through the night I had started to consider that I could have the radiation. By the time I talked to my family, I was able to say that I was seriously considering going ahead with it. It actually was a relief to have finally made a decision. I felt I had done my bit, now I was able to ‘hand it over to God’ and let Him take charge. I was not totally at peace. That peace came gradually over the next 24 hours or so.

Knowing the Peace of God in times of turmoil

I am still at peace about it today. I am still fearful, even terrified of going completely deaf, but now I am trusting God with the outcome. That doesn’t mean that I won’t go deaf in the future as a result of the radiation, but it does mean that I will let God be God and trust Him to guide me through whatever He has planned and that I am open to learn what ever lessons He has for me now and in the future. I also believe that sometimes I might be being used to teach someone else something, even something like patience and compassion. Who knows, that is God’s domain. I am clay in His hands.

A time to recoup and regroup

When I informed my husband of my decision, he had the great suggestion that we postpone the start of the radiation for a month to use the time to allow my body to heal and regain some strength from the 2 operations close together which certainly had knocked me around something fierce. I thought that was a brilliant idea as I am extremely fatigued and still having blinding headaches 3 weeks post op. I had a request of my own then, which is to ready the caravan trailer and that we hit the road for all of part of that time. He readily conceded! Now we just need to inform the radiation oncologist. I might need to have a mask made before I can leave though.

The phrase "taking things day by day" has taken on a whole new meaning for me.

Make Old Christmas Cards into New Crafts

After the madness of parties and such, it soon becomes time to start thinking of packing all the decorations away for another year. It used to be that everyone would get tons of Christmas Cards each year. I noticed that I don't get as many now as I used to! Now you might be tempted to do the right thing and hand them in to Planet Ark or such. But there is a better way: recycle and up-cycle and create new from old. Even if you don't get many cards anymore, wrapping papers, tags and cards are always available for half price or even less after Christmas. Later in January you will find that calendars are cheap too. So you've no excuse to make some post Christmas crafts ready for the next Christmas if you want to be super organized or at the very least you can buy them now and save them for simple crafts that you can do later especially with your children and grand-children in the lead up to next Christmas.

Kids love to make paper chains

Paper chains are especially great with the little ones. Sticky tape, staple or glue small strips to make circles and link them together to form a chain. Surely you remember the fun you had making these yourself when you were much younger!

Gift Box

Follow this easy tutorial to make gift boxes like the one above from the cards.

Make handmade cards by reusing old cards or by using shop bought cards: Buy 2 sets of the same cards so we can cut images from one set and mount them above the same image on the other card.  (If they are too young to cut, then I will cut and they will mount the images!)
I like to add glitter or puff paint to the cards, esp for 'snow and Santa's beard and fur!'


Cut down cards into Gift tags. There are some fabulous ways to get multiple images from one card sometimes. Basically you cut a gift tag shape out of the front of cards. If there is writing on the back then glue this tag onto a plain white card as a layer. You might even be able to judicially use the back of the same card if you are lucky.

A selection of gift tags

Similar to the above tags, but the images and glue them onto gift bags or even just plain paper bags for gifting.
If you like making your own jams, pickles etc as gifts then what about decorating the jars with circles cut from cards to fit and cover the jar tops.

Decorated Jam Jars.

If you are like me, you will have no idea how to pronounce the mathematical name of this 3D ball made from cards. I like to keep it simple and just call it a Christmas Card Ball. The name is horrendous but to make it is really easy. You just need to cut 2 circles and trace a triangle inside it, fold on the triangle lines and glue. You might need older kids for this though. You could be boring and make it into a maths lesson at the same time!

If you want to make something different then try this nifty Advent Calendar or these marvellous Luminaries. Both are beautiful and simple.

Another unique idea is to cut multiples of the same shape, fold each in half and  glue back to back as Folded Hanging Ornaments like the one below. You can make all sorts of shapes as long as they are symmetrical.

Make Christmas Card trees by cutting various size circles. The link takes you through the easy steps to make a couple of versions.

Christmas Card trees - Image source: BHG

There are so many ways you can recycle or cheat and use newly purchased cheap cards and papers to add that hand made touch to your next Christmas.

I'd love to add to my list if you have any handy ideas for recycling cards. Just pop the suggestion or even better the link to it in the comments below. I will eagerly look up each and every suggestions brought to my attention.

Loneliness

Yesterday was Boxing Day and with nothing on the agenda, gave me too much time to think.  I needed the day to recover from the activities of a large family Christmas Party at the new home of my eldest son and his family.  Being busy would be a welcome distraction, but I am not well enough to have much on my agenda anyway.

Image source

The isolation that having cancer renders one is a lonely road to travel. Having to make a difficult decision is so overwhelming at times. Even though I am surrounded by people who love me, there is still a feeling of being disconnected or separated from everything going on around me.

There are not many who understand the fear I have of being totally deaf. Growing up profoundly deaf (about 20% hearing)I have always had to struggle to be accepted. I lip read very well and manage to be able to join in the 'hearing' world especially when I can control the auditory environment, ie is how much noise it going on. For example a dinner party of 6-8 is ideal and large party where everyone is talking at once, bamboozles me. I have also been isolated by people's perception of me. Maybe they think I am rude because I didn't respond whereas I probably didn't hear them. Maybe they think that because I heard but didn't understand them therefore I must have a mental disability. I had to fight to be accepted into schools and sports, often becoming twice as good as the average just to be accepted by them. And I could go on.

Now with the Andenoid Cystic Cancer in my nose and sinuses requiring radiation treatment which is so near my ears that it could very likely cause some permanent hearing loss. The thought of the repercussions is affecting me very strongly. I feel so alone. No one else can begin to make the decision for me and not many will understand my fears or even try to. Already I have been brushed off by people who think "So what, just get a cochlear if it happens." I already have one and I know that a cochlear will help me hear sounds, but it doesn't/hasn't helped me to understand the sounds that I hear! It will be better than nothing, but nowhere near as good as the little that I already have.

Again and again I am trying to draw comfort from the Bible 'I am with you always'. Matt 28:20 is one bible verse I rely on... actually there are many others too!. But this one when I feel all alone even when in a crowd.

Decisions, Decisions, Decisions

Post operation consultations

Today I had my post op meeting with my surgeon who is very happy with my progress. It is at this meeting that another name was given for the cancer which is Adenoid Cystic Carcinoma (ACC). He showed us a photo of the large 5cm tissue and septum area that he had removed in the second operation. This was much larger than I had envisioned. He mentions that the polyp removed in the first operation was a Stage 3 cancer which basically means it is an aggressive cancer (Stage 4 is the worst). The pathology of this second surgery (for removal of any remaining cancer) showed a stage 1 (low grade) cancer. The 2nd surgery included the removal of the posterior of my septum. Thankfully all this was done through my nostril and thus there is no disfigurement that can be seen. It did make it much more difficult for my surgeon to remove the septum & surrounding tissues however I am grateful that I 'look normal'. (I know vanity rears it's ugly head and it should be the least of my concerns at this stage.)

He also informs me that my severe headaches 2 weeks post op are an expected side effect of this operation, as well as the phlegm and blocked Eustachian tube. He assures me that all these symptoms will continue to improve. He is confident that he has gotten all of the cancer, however due to the nature of this rare cancer, being he thinks radiation therapy would be a wise option.

The surgeon and a multidisciplinary panel have met and consulted together about my case.

Oncology Team & Radiation

Rob & I then met with my oncology care team. We go over some of the medical stuff and what to expect. In a nutshell I have do not have to have radiation and chemotherapy is not mentioned. It is possible that they have got all the rest of the cancer in the second operation. However “the microscopic invasion of the cancer cells can be difficult for a surgeon to detect during surgery. Due to its microscopic size it may not even show up on MRI, CAT or PET scans. Even when achieving clean margins, it has been reported that this cancer has sometimes seemed to “skip” over areas and appear to have spread into a region close to the original tumor but not necessarily connected to it.”

The implementation of radiation therapy now is most likely to kill off any of these microscopic cancer if present. If we choose not to have the radiation and it does come back then it could be very difficult to locate & will quite possibly be in more inaccessible places that will be a lot more difficult to remove either surgically or with radiation, for example on the base of the brain.

Side Effects of Radiation

We discussed what the possible side effects could be from the wide spread radiation targeting my various sinuses. The majority of these are of a temporary nature, meaning discomfort and localized pain, fatigue & other such unpleasantness for a couple of months during and beyond the therapy itself.

However there are 2 possible side effects that are long term:

1. Possible Cataracts

I will be more susceptible to cataracts on my eyes. This is something that can easily be surgically removed and is quite a common procedure now.

2. Permanent Hearing Loss

The other thing that I am most concerned with is permanent hearing loss. The oncologist did not bring it up at all as a possible side effect. However with the advent of Google, we are able to look up a lot of researches and blogs etc ourselves and I found 2 people, both Americans I think, that have had the same rare cancer and been treated with radiation. One has lost so much of his hearing that he became bi-lateral cochlear recipient and the other just mentioned that she had permanently lost some hearing.

Real Life Cost

I do not want to risk losing the little hearing that I do have. I have been congenitally deaf all my life and I had a cochlear implant some 4 years ago which I feel has not helped a lot in my speech recognition. Sure a second cochlear would help me hear sounds but it doesn’t help me to recognize those sounds in a practical manner any more than the first one did! My initial thinking is that I would much rather take my chances and risk death down the track rather than go completely deaf as a result of radiation. I am sure many hearing people will not understand my reasoning. I am willing to explain or discuss this publicly if there is enough interest but this post today is NOT the time to explain my thoughts.

So that is where I am at today! I can take my time making my decision; ideally the Cancer Clinic would like to know in about a week’s time. Obviously my husband and family are impacted by whatever decision I take and I will be discussing all aspects and concerns they might have.

Most of the information about ACC I have sourced from Adenoid Cystic Carcinoma Organization International. Direct quotes have been done italics are from this very informative page.

(Edited sub note: Chemotherapy has shown to be relatively ineffective in the treatment of ACC)

Let me introduce you to Aden

On the 3rd of Dec, I was introduced to Aden, my pet name for my nasal cancer. Apparently I have Adenoid Cystic Carcinoma (ACC) or very simply put, I have a nasal cancer. It is a malignant tumour originating in minor salivary glands. No offense, but i wished I had never met Aden. but he decided to pay an unwelcome visit and I will have to take a few months to purge him from my life.

I dare say that my journey will be not be particularly remarkable. There are many others that have life much tougher.

I went under the knife on 11th Dec for the second time in 3 weeks. It was now going to be one operation instead of 2. They removed as much as cancer ridden area as possible and took biopsies at the same time. Thankfully it was just an overnight stay with no complications. I was and am still at peace about the whole procedure.

I arrived home just after lunch & headed straight off to bed. (Figtree Private Hospital have some yummy foods and I just had to sample that before I allowed myself to go home!) I am in less pain than expected after the first operation (but that might have something to do with the stronger meds, which are morphine based, this time around! Whoo Hoo!)

Apparently drowsiness is a side effect too, but then I have plenty of time to sleep now anyway. The doctor is pretty happy with how the whole surgery went. We won't know the full story until the pathology comes in and is assessed by a panel of experts including oncologists etc. I have my post op meeting on the 24th Dec.

My main gripe is my lack of energy and motivation. “Where oh where has my energy gone, Oh where oh where can it be?” For a very short while after some naps, I feel almost normal and that itself feels great. I like to walk out to the bus conversion my Hubby is working on. The gentle walk (30 metres if that) and dreaming of the future, is certainly good for my soul!

One of our daughters with her niece celebrating Christmas Carols

As it is so close to Christmas, our son and his family came for the Carols by Candlelight hosted by our church and to visit Hubby and myself. Our 2 daughters came home too for the Carols.

Even though I wasn't up to attending the Carols, it is wonderful how much difference having family around has made to my general mood.

On the Sunday I also had some friends pop past too which also adds to the general delight of the weekend! I am amazed at how I can find the energy from somewhere within, when I have a visitor or 2. Sure, I fade out fast after they have gone, but it is so worth it to have them come around.

I can always sleep after they have left. being tired is such a small price to pay for the blessings of having family & friends call in.

Being inspired to create

Grandchildren bring joy for many reasons and to be able to make things for them and with them is a bonus that I am thoroughly enjoying, even more so now that we get to see them more since they moved to Sydney.

I used to sew when my own children were young, mainly clothes. Though I am happy to make clothes, there is an extra joy to make other things such as hairclips, heat pack owls and mini dolls. I have pinned a huge number of wonderful ideas on my Pinterest Boards of things I can make for the kids and things we can do together.

I love Christmas time too. I married into a very crafty family who love to share their wonderful talents either in teaching and most particularly in gift giving. In fact it seemed to be an unspoken rule to make something as a Christmas gift. Sadly with the advent of so many nieces and nephews having kids too that we just don't have the time to make something for everyone anymore, though many a year we still make something for our immediate family.

 I would make at least one Christmas craft or ornament each year and frequently enough for each of my children too. I love my Christmas Tree skirt and the crochet mini stockings that my Mother in law made that inspired me to make a collection to pass on too!

Making and giving a handmade gift is so satisfying. Many of our gifts are not perfect but that is part of the charm.

What inspires your creative juices?

Life is unpredictable

I wasn't sure about whether to write about this at all... but somehow it just seems to be right to do so. I am not usually comfortable with letting people know deeply personal things. It seems so melodramatic to state "I have got cancer." There are many, far too many people that get cancer every day. Also I have so many wonderful people inquiring about my progress but there is not always enough time nor the energy to respond to each one of them. This way they can all read about it for themselves. I love talking and blogging is sort of a bit like talking! So if they don't want so much detail then they can gloss over the boring or unpleasant information without worrying about offending me. Aside that most people are just busy with their own lives anyway and don't want to be dragged down.

I have been suffering with a blocked nose for months now, which was nothing new as I suffer from hayfever a lot, but then one day I noticed that one side of my nose is continually blocked. I also started to get a lot of nosebleeds, a first just a few times a week but then soon, it was almost daily with sometimes several in the one day. After 6 months or so of continual blockage, I decided to see my GP. After a course of antibiotics that didn't clear it up, he referred me to an ENT (Ear, Nose and Throat specialist.) Even fast tracking it, I still had to wait more than a month for my first appointment.

To cut it short, I had a large polyp blocking my right nostril. I needed to have an MRI scan to see the extent of the polyp prior to having it surgically removed. Herein lies my first problem. I am partially deaf and have a cochlear implant. An MRI will be a painful procedure, so I am scheduled for a CT scan. Unfortunately this gave insufficient information and an MRI was unavoidable, which is normally a painfree procedure. However I have a cochlear & that changes the whole story.  I wrote about that painful experience here.

Within a short time, I had the polyp surgically removed and a biopsy was automatically performed, Most nasal polyps are benign. I was back home within 24 hours. It is normally just a day surgery but I was one of the last on the surgery list for the day so they decided it best to keep me overnight. The recovery was much less painful than I expected. I did have the stronger Panadene Forte for the first 48 hours and then just reverted to paracetamol for pain management, which was more than sufficient. I just have the general fatigue that follows general anesthetics.

Life doesn't always follow the tracks and some cancer was discovered within the polyp and now further testing and scans were needed to find the extent. A PET scan shows that the cancer hasn't spread beyond my nose. My ENT refers my case to the Oncology department of the major teaching hospital for early the following day.

All I really remember hearing & understanding is:

I definitely have cancer.

We need to operate

I will need to have radiation.

There was something mentioned about further biopsies needed first to find the extent of the cancer. And the concern that if it has reached the base of the brain that removal could cause spinal fluid leakage, for which they need to arrange to have special equipment (or people) on  hand in case of that scenario.

I have taken much of this news quite calmly and philosophically. My next thoughts is "Bugger, that stuffs up everyone's Christmas this year!" (Everyone within my immediate family that is!)

It's been not quite 48 hours yet. Maybe it hasn’t set in completely yet. I am not the worrying kind. Basically I just take things as they come. My mother's motto comes to mind, which is a line from a song she learnt from the Salvation Army, "Just one day at a time". I’m not scared nor worried. I know it will all work out how it’s supposed to. It’s much easier to hand everything over to God. He has said it before to me and he says it again now - just 2 little words that have had such a huge impact on my life.  Those 2 little words?

Trust me!

I hang on to them once again with utmost confidence that He will not let me go. I may not know what tomorrow will bring, but He will be there and that is all that really matters. I might need to read this again and again over the next few weeks and months and remind myself of this basic truth! So remind me if I forget even for a brief moment, that God is with me. (And with you too if you will just let him into your life too!)

Post Script:

I go ahead to have surgery next week. They will excise the area surrounding the back of the nose including removing the posterior part of the septum. This is to to be followed by radiation soon after. No mention has been made of Chemotherapy at this stage.

We can only live one day at a time and I hope that if God has a specific purpose for me that I can recognize it and accept his leading. It is times like that that reminds us to make the most of what we have. Michelle