Fran's Journal Fran's Journey of Hope

Still not much journalling of recent. I guess I feel in a limbo land. Waiitng to see what the scan will say after the next cycle. Still another 3 1/2 weks to wait.

I dont know honestly what I want the results to be. It sounds so nice to think that there would be no more chemo. With 9 1/2 weeks to go it still seems like a never ending journey of unpleasant life. Too hard and too much work. So being told that the chemo could be cut short is WOW!, how nice. But then if it is that chemo is not effective, OH NO!, my prognosis goes quickly down hill and how long will I be expected to live? That would be very confronting to think there was not much hope. So overall I think that doing the full course of chemo is the option that I really want.

I am basically a lazy person at heart. If there is an easy way to do this, I would have taken it. That is why I struggle with the chemo. It is not the easy way.

Also I still despair that the side effects will not really wear off after I finish treatment. It has been for so long that eating and drinking is a non event, that I worry that my taste buds will forget how they are supposed to work and that I will never get back to tasting. The drug information says “Normal taste will usually come back after the treatment finishes” I don’t like that “usually”, I want it to say “always”, because it makes me worried mine wont come back!!

I know that sounds so trivial considering the potential impact that the chemo may be having in reducing the tumors and giving me a bit longer to live.

The reality of that I have cancer hit me again this week. I happened to have my hand on my middle upper abdomen region for no particular reason and notices a hardness that went from the right next to the ribs to the midline just below my breastbone. it gave me a shock, because it was my enlarged liver. I had not felt that before. Even though I have had numerous scans, blood tests and recently pain that tells me that I have cancer with liver metastasis, I experienced the weird thought of ” oh, so all this is real, I do have cancer and it is progressing”.

I have been quiet for the past few days as it has been an emotional and mentally draining time.

Having my family here for my nephew’s wedding on Saturday gave me the spark to get through the first few days after discharge. (Also they had filled me with IV fluid so I was over hydrated on discharge for a change.)  I have had my parents, sister and hubby stay and still have another brother and niece to stay this week. At the wedding I saw many family and caught up with several friends from days gone by. The wedding went smoothly and the predicted thunderstorms did not really eventuate, so the rain that occurred did not affect the reception that was held in the park.

But with people coming, it also means saying goodbye when they have to go home. And with my prognosis being somewhat up in the air at the moment, it heightens the unknown things of the future.

Probably because the weekend was very physically taxing, it would be reasonable to expect that I would struggle mentally afterwards. I have not journaled becasue I did not like the negativity of my thoughts and the lack of will to fight on any more. I knew I owed it to everyone to keep on fighting.

I know I should not think about the “what if the chemo is not doing anything”, and “why am I putting myself through this chemo and making myself feel so sick when I was feeling ok before I started”. I get sick of fighting every moment to make myself eat and drink, when my brain is saying “Yuk”, my taste buds taste nothing but a creamy / buttery sometimes metallic non event taste all the time and gives no pleasure to eating. I know that I desperately need to keep eating because my muscle and fat stores are wasting away and there is no padding left over my bones. It is all so logical, but I just don’t feel like eating or drinking anything. And over the last few days I did not have the energy to stay on top and believe this is all worthwhile.

Today I have regrouped and God has given me the energy to start to claw back purpose to my life. My friend Karen is here overnight and just having her in the house has brightened my spirits.

Maybe I will be around for a good period of time after chemo and there will be quality to my life again. I should not be so shortsighted and only see life in terms of how I feel now. But on those down days, I cant see that I will have energy again to do the things that I want to, to entertain, to taste food and enjoy eating or be able to contribute to the family rather than lie down all day trying to get the energy to stand up and have a shower or pour a drink.

I read in magazines or see on the news etc those famous people who have battled with cancer. They have had fight. They sound like they powered through the experience and come out the other side. Why cant I be like them? Surely they struggled. Surely I am not the only one who has a rough time with chemo?

I am home after having the best start to a cycle to date. Thank God.

Before I started this cycle, Rick told me that he will do a CT Scan around the 19th January to assess progress. If that scan shows that there has been no reduction in tumour size, Rick will cease chemotherapy. This did put a dampener on my spirits.

It has also motivated me to push past the side effects and demonstrate some more of the pluck that everyone else believes I have to show Rick that I can do the chemo. In hope that if the results are not too good, Rick may consider that it is still worth doing the full course of chemo. This is the only part of the chemo that I can control in anyway.

My prayer request is for the best CT result that is in God’s plan and that we have peace about the decision that is then made.

The events of the past week have sure given me a lot to ponder on. It has been a reality check. To date I have been living in a weird world where things are happening to me but my brain protects me from believing they are happening to actually ME. I still think I will wake up from this and it just be a dream. A story that I have been telling everyone to just get attention.

Every time they do another test, I have to tell myself this is real. This is evidence that it is actually happening to ME. They can’t be getting so many scans and tests wrong. No-one is accidentally putting my name on the scan when it really is someone else. Even though I watched the guy doing the liver ultrasound and saw on the screen the tumors, I look at the report and wonder if he has reported on someone else and not me.

Yet the other side of my brain knows this is real. Is trying to process everything in a way that means I am dealing with it constructively and positively. That I can cope and face it and the implications.

It is a weird concept knowing that part of your body is on a destructive path that will mean you die. How do you know when you are dying? What does it feel like? How soon before you die do you realise that you are going to die? When are you living and when are you dying? When will they decide that the options to fight this are no longer effective? How will it feel for them to say “sorry, we can no longer do anything”? Will that happen after this chemo? How soon? Do I have months or will it be more than that to live? How do you prepare yourself?

The clinical side of my brain knows many of those answers, but the “me” side of the brain blocks the answers coming to be “me”. Through my years of nursing, I know that liver secondaries are a death sentence. Reality is that once there is liver involvement there is not a lot of hope and the cancer progress quite fast. And that is what we saw with me.

Back at the end of August (13 weeks ago), the initial CT Scan showed about 4 tumours in the liver that were 1 to 1.6 cm in size. The ultrasound 18 days later (mid September) showed that the largest tumour had doubled in size was about 3 cm in size (I have not been told how many more had developed by then). The ultrasound last week showed that I now have at least 10 tumours in the liver and the largest is 4.2 cm with some of the others 3 cm. At the time of starting chemo, my liver function was starting to suffer, but over the past few weeks has returned to near normal range.

From that we are working on the belief that before chemo started in late October the tumours got to a size significantly bigger than 4 cm and that the chemo has reduced the size. If we don’t assume that then it means my prognosis is even worse. We will have to wait patiently till March when the chemo finishes to see the actual effect of the chemo. But the rapid increase in size and number of tumours in the liver shows how fast the liver is effected and had I not started chemo, I would not be as well as I am now and probably would have only been given 6 months to live. The chemo is expected to buy my extra time. But how much?

My prayer is that this chemo is buying me some more time with significant improvement in wellness. I am selfish. I want to feel hungry again, to taste things, not feel nauseated by the thought of food and then nauseated if I don’t eat food. To be able to eat and drink because I feel like it rather than do it as chore because if I don’t I will get dehydrated or more nauseous. I want to go to the fridge and eat anything. And to feel excited about eating. I want to have the energy to get in the car and go for a drive, or go shopping or go and visit someone without spending hours before hand psyching myself up to go.  I want to have more padding on my bottom so that lying and sitting is not so painful and so that when I sit on the loo I can sit comfortable and not perch because it hurts to sit. I want to feel well, not whinging about feeling miserable all the time. I want to encourage other people rather than be mopey every time someone talks to me. To have every SMS I send saying having another good day. To be able to dream of things I am going to do in life. To see the kids grow up, get married, have more grandchildren. To be there for Mike not a daily burden on him. I want the world to stop being about ME.

But that is all in God’s hands. I don’t know what He has planned for me. But whatever it is He has also given me the equipment to cope and ride the storm. He asks me to be thankful for all things. And I have to pull myself up some days and start to list off all the things I have to be thankful for. And when I do that, I amaze myself how long I can get the list. Life is not all that bad. God is my Provider, my Rock and my Strength. He may not be my Healer, but that is okay as He is my Comforter. And He offers me the greatest prize of all. eternal life. And in that place I will be reunited with my mother, someone I have not seen for 33 years and that is so exciting. Also my sister, who died two and a half years ago. And many other precious people in my life. That is the hero’s welcome that I will get if I can go the distance. (if you turn your volume on, you will hear the song playing on this page)

About 6 years ago I came across a song by Michael Bolton, called “Go the Distance” from the movie Hercules. Over the years I have played the song many times at great volume to let the words wash over me and encourage me through tough times. Over the past 3 months I have been soaking up the words again. They are so pertinent to where I am in life. The song talks about going through life’s journey, being strong, not giving up hope, to receive a hero’s welcome at the end. Because of the significance of the song in my life, Deane is going to incorporate the song in this website.

I had a liver ultrasound on Monday to assess the effectiveness of the chemo. Last week the endoscopy appeared to indicate that progress had been made. Unfortunately, the gastroenterologist that did the scope had not seen the stomach tumour before. Also most of the stomach tumour is in the stomach wall and not observable so accurate measurement of size and therefore assessment of chemo is not possible. The ultrasound therefore would give a more accurate indication.

Last night I was told that there had been significant increase in size of the liver tumours. The scan taken in August showed the largest liver tumour to be 1.6 cm. On Monday that tumour measured 4 cm. As no scans were done in October immediately before commencing chemo, it is not known if the chemo has been effective. It maybe that over the 2 months between finding the tumour and commencing chemo the tumour has grown to a size greater than 4 cm and the chemo has reduced its size or it may be that the chemo has not been effective at all.

The concern is that there is only a small range of chemo drugs that are effective against this sort of tumour, unlike other forms of cancer. So we will be continuing with the current regime with the hope that the next 4 cycles will be effective in reducing the size. Rick had been hoping that the scan would provide me with encouragement to continue chemo especially after 2 difficult cycles.

We were also advised that after this course of chemo the expectation is that there will be residual tumour mass that is resistant to the chemo. That there would be ongoing scans to monitor for new growth and that that is more likely to occur in a matter of months rather than years. Future treatment options would be explored at that time.

It was good that Mike was here at the time Rick came, as he was also able to ask questions at a time when we try to comprehend what this means for us. We have been given opportunity to consider our priorities, what we want to achieve, what provides quality to life, what are the things that really matter. Being given that opportunity is a gift that we need to be good stewards of and not fritter away any moments.

Every time I ponder my “Bucket List” the first thing that comes to mind is saturating myself with all the amazing, wonderful people who have crossed my path. To give them back love. To thank them for all they have done. Supporting me, sharing with me, opening their hearts to me, accepting me, encouraging me, loving me, giving me opportunity to grow, experiment, learn. That is an enormous task. Life has blessed me with so many experiences, so many people. Many passing ships, but I would so much love to see them one more time and tell them how that passing moment has impacted on my life.

Go the distance

I have often dreamed of a far off place, where a hero’s welcome would be waiting for me,

Where the crowds will cheer, when they see my face,

And a voice keeps saying, “This is where I am meant to be”,

I’ll be there someday, if I can go the distance,

I will find my way, if I can be strong, I’ll know every mile, will be worth my while,

When I go the distance I’ll be right where I belong.

On an unknown road, to embrace my fate,

Though that road may wander, it will lead me to him,

And a thousand years, would be worth the wait,

It might take a lifetime, but somehow I will see it through, and I won’t look back,

I can go the distance, and I’ll stay on top, no I won’t accept defeat,

It’s an uphill slope, but I won’t lose hope,

If I go the distance, then my journey is complete.

But to look beyond the glory is the hardest part; a hero’s claims the mountain by his heart.

Like a shooting star, I will go the distance,

I will search the world; I will face it all,

I don’t care how far; I can go the distance,

Till I find my hero’s welcome waiting here, in your arms.

I will search the world; I will face its harms, till I find my heroes welcome waiting in your arms.

Michael Bolton