Fran's Journal Fran's Journey of Hope

Have been very busy trying to organise things. Time is very precious because I dont know how much I have left. Thus continues my great sense of urgency to push and get the things done.

It has been an interesting experience doing funeral planning. Once I got started I am enjoying it (funny word to use!), trying to think of all those things that will be of significance to me and those who surround me. It is fascinating what you can do, the sky is the limit! I have found a funeral director who I really like. It is like we are organising a function, it is not morbid or sad. It is more about celebrating who I am and who God is for me. I could choose to get bogged down in oh how sad and all the rest, but that’s not going to help, so let’s be practical and focus on what will give the occasion meaning for everyone. Also how to ensure that the focus is on the great God who is holding me and nourishing me at the moment so richly.

This week is my 4 day trip to Adelaide. I am stockpiling all my energy for that. It will be physically and emotionally exhausting, but it is something that I really want to do. I must admit, there will be great feeling of relief and achievement when the plane touches down in Brisbane next Saturday.

I have so many possessions, financials matters, odds and sods that I want to put in order. I want to refurnish the lounge and if possible organise insulation for the roof (it’s mad, but we don’t have any and this is a hot summer) and maybe if I can another air conditioner. Funny the things that become important!

So there is plenty to do and it seems like there is not much time. I don’t know why I have the sense of urgency. I know I will be able to rest easier once these things are done. That does not mean I will turn up my toes and want to die once I have completed the above. Hey I have so many wonderful people to live for. But I also know reality. I know I am dying.

My path is not one of anguish and distress. I feel calm. This is my task. Some people have a job they have to get up to each day to do, some have exciting holidays to go on, at the moment, my job is preparing to die and go to heaven. It is not scary. It is not a place of turmoil. Sure I have sadness, sense of loss. There is nothing brave about it, it is that I am on a different path. If I am being brave so is everyone else getting up and doing whatever they have to do for the day. I really don’t see the difference.

I realise there is no prizes for martyrs, so am learning to stop and rest a bit more and take the pain medication more regularly. And when it does not cover me, rest a bit more and it passes. Yes, I get uncomfortable as the liver gets bigger and squashes everything. And I notice each week that I can feel more lumps and that the liver is taking up more space etc. And it can give me a bit of a fright, but hey that’s the disease. Got to go with the flow.

So please do not feel sorry for me. Please do not pity me. Please don’t say its not fair, because it is not a matter of fair or unfair. All I want is to spend time with you, hearing what is going on in your life, what is mattering to you. Just hanging out like we have for so many years. Nothing has changed, except I am going go to be spoilt soon and spend eternity in heaven. Yes, it will be a great release from this life. And one I look forward to sharing with you in days to come.

What a confronting subject. Death. Many times over the years I have fleetingly thought about how I would feel or think when my death became a reality.  This never having been the case in the past, my thoughts have been previously quite superficial.

Over the past 3 months with the changing of my situation, thoughts about preparing for my death have often wandered through my mind. Each time my musings hit on another aspect or thought that I had not considered. When having to consider it is part of reality, it becomes a complex issue. I think of things that I realise I never had explored before. And even now I don’t really want to explore. Too painful, too confronting.

I allow myself to explore death and preparing for my death because at sometime in the future it is my reality. At the moment while it is not imminent it is not so urgent an issue and therefore I am able to consider options, preferences and what I want in life/death. It still is just as emotionally loaded but at times I can distant myself from the emotion and think logically. The more I think of it the more I realise that I need to think about it and organise things in preparation.

Should I go through my things and throw lots of stuff sentimental to me only away?  Or should I leave it for others when I die? I really cant see Mike going through the stuff and throwing things away – I can see the house being cluttered till the day he dies and then who will be the poor person who has to do the clean out?

What will my condition in the time leading to my death? Will I be well and then suddenly go downhill or will it be a gradual decline? Will I be self sufficient till the end or will I need assistance with care needs? Who will care for me if I need it? Should I expect family to care for me at home? What community based care services are available? Will I be admitted to hospital? I don’t want to die at home – I think that would leave horrible memories in the house for Mike.

Throughout my life I have loved planning and organising. I have organised so much of my life, I am not going to miss out on the opportunity to plan my funeral! It will be the only one I get to plan! Wow. Where do you start? How do you choose a funeral director? Where will the service be held? What sort of emphasis do I want for the service?  What songs do I want at my funeral? What do I want to be buried in – my wedding dress? pyjamas? something else I buy? Where is the wake held? How many people should be catered for? I love flowers – so should I organise lots of flowers or will others provide flowers? Do I want anything special buried with me? Lots to think of!

But in pondering all this, at the moment there is no fear. It is going to be my release to a place of great joy, no more suffering and much beauty. Sure I am jumping the cue, but hey, I will be hanging out in heaven eagerly awaiting to catch up with you all when your time comes. And in that interim, I will be keeping a watchful eye out and hopefully there will be times you feel the quiet hand of a watchful guardian on your shoulder – that will be me.

I guess it came as no surprise to me when I saw Rick the oncologist on Tuesday to hear that the CT Scan showed that the 4 chemo treatments had had no effect on the liver tumours. The scan showed that there is now innumerable tumours of the liver. As a consequence, Rick has ceased chemotherapy. There is one more drug that could be tried, but Rick believes that it will be ineffective and it has many side effects that would continue to make me feel sick. Because of the aggressive nature of the cancer, Rick feels that I have 6-8 weeks of quality life before I deteriorate. It is for that reason also that he does not want to subject me to further treatment, so I can have time getting back my strength, taste and be able to sort out all the things I want to do before I die.

This was indeed shocking news on the day we received it. But since then I have gained great peace, because once again I know what the nature of the beast is that I am dealing with. It has given me a purpose again to live.

While on chemo I was so focused on how horrid I felt and often I did not feel like living. I found it hard to experience joy and pleasure and felt that was what the rest of my life would be like. What was the use of doing anything because I was going to die.

In a turn around, now everything is of use. I have lots to do, things to plan and so many people that I want to see and have great memorable and pleasurable times with. I may not have long to live, but I am going to live it as long as I can.

Times given are just concepts. If I am feeling full of life in 10 weeks I wont be whinging, every extra moment is a blessing and gift. We all know people that were given a certain timespan and well out lived that. So time is in God’s hands and that is all I care. He will take me when he is ready and that is when it will be.

So folks, I am happy to fill my days with you. I am fairly mobile at the moment. I am on Fentanyl and Morphine for the pain, so am pain free. Just sometimes I get a bit tired. This has also given me a new lease on life because I can get about and not feel sore all the time. Down the line, they say I will get more tired and spend more time resting, but I am happy to go out and have as many visitors as possible. Cos I have lots to cram in!!

Well this has so far been the best cycle that I have had. I know I should not count the chickens before they hatch, with one more week to go in the cycle, but I must confess it has been easier than the last 3. That does not mean that I am free of side effects, but that I am riding them a little easier and there has not been any wild cards so far.

It also has been a quieter. Last cycle was very busy with the wedding and Xmas. In some ways it flew by becasue I had family around for so much of the time. This cycle has dragged a lot more.

I have had more energy so am forcing my lazy self to walk Charlie in the dog park at least 3 times a week. I have noticed that my leg muscles are a bit stronger and that with each walk I don’t feel so faint. I also set myself a task to do each day, so that i feel like I am accomplishing something.

This cycle has not been without the mind battles. On a couple of days I became quite anxious in the morning and felt some of my old panic mind patterns happening. But I was able tio pull myself up quickly with prayer and also looking at the ways that I am in control of the moment therefore not letting that free floating anxiety start a spiral.

I probably cry most of the days of the week. Sometimes the littlest thing on TV or thought triggers the emotion. I allow myself a few seconds to indulge in tears and then pull myself up. Sometimes it is self pity, other times it is grieving for things I have lost, or things I perceive I will lose. Sometimes it is sadness on behalf of others – grieving on behalf of others.

I have my CT Scan booked for this Friday, but I doubt I will know the result till the following Tuesday. I try not to wander that far in my thinking. I don’t know if I am ready to find out if the cancer is still progressing. I am concerned because my liver is larger than before, and is very tender at times. But maybe that is just the chemo. Also I feel different around the midriff – the stomach / liver areas – as if things are getting squashed in there. Maybe it is just mind over matter. My liver function was the worst it has ever been at the beginning of his cycle, but then the chemo can make it go up and down, so maybe it is not from growth of the tumors. Just have to be patient.

I cant believe that it I am nearly 10 weeks in to chemo and there is only 8 to go. It has seemed liked an eternity, but also another eternity to go. I read of people that have longer sentences of chemo or repeat courses and marvel at their strength. It is so true that God gives us the ability to face our path and that one only. Each morning I despair of having to go through another day, but then as the day goes by I realise I have achieved some more time and that means there is less to go. It is a small token of encouragement.

The Christmas cycle was a great gift of so many people’s time and support. With the wedding and festive season, it seemed to be a full time. Now it is back to the humdrum of everyone being at work. Mike starts his new job as Executive Director at QE11 Hospital today. That is good as it means less travel for him and he is closer should I need any support. But it is sad as he has been so supportive, learning the caring role – not one that comes easy to him. He is showing great patience with me and learning the routine. For this I am so appreciative as it makes each day a little easier.

Many people visit and tell me that I look good. I appreciate their words. It is frustrating though because inside myself I just feel this dead, toxic feeling of sickness and wonder what others see. I guess that is where how you feel is often in the mind and the perspective that you chose to see life from. I guess I go on about this dead feeling a bit. It is because I feel I cannot adequately describe the second sense that I have that some of my body is being poisoned. Perhaps I ramble on about it becasue I find it hard to accept that this is what I am doing to myself. And maybe I just don’t accept that I have to go through chemo. I will be ever so relieved once the CTScan is done in a couple of weeks becasue I think it will make life so much more easier to know that the chemo is taking effect and that I have not wasted 12 weeks of being sick for no gain. I keep myself on hold waiting for those results, as I do not want to be angry if the results are not good and I have wasted time. But if that is the case, you make decisions with the information that you have at the time and you cant kick yourself for what you could not know.

I guess too I still am trying to accept that I have cancer. It is a thought that sits in the back of my mind, part of who I am but not. I have physical signs that things are happening – different pains, intoleracne to fat, bloating and new lumps in the abdomen, that affirm that it is all true. But it is still this weird thing that is happening around me and not to me. It is sometimes like a charade that everyone is playing out with me. When will the end come and we all live happily ever after? When is the game up and we all get back on with our life that we lived up to a few months ago?