Fran's Journal Fran's Journey of Hope

Thought I better complete a summary of the events since 4th September, nearly 10 weeks ago.

I have been aware for the past year that I had a tumor in the Ampulla. This is the small tube that connects the pancreas and gall bladder to the start of the small bowel. If the tumor was not removed it would eventually become a cancer, but it was still in the early stage. The surgery to remove it is called an ampullectomy.

Following my ampullectomy on the 28th August I had some post operative pain. As one of the complications of an ampullectomy is pancreatitis and I knew that the symptoms of that was pain, I went to the A&E to check that nothing was wrong. Part of their investigation was a CT Scan. The CT Scan showed a 4 x3x2 cm tumor in the stomach and multiple 1 – 1.5 cm tumors in the liver. The CT Scan report gave a provisional diagnosis of metastatic cancer. Initally I was told it was nothing, they were Gardeners’ syndrome lumps and bumps and I was not to worry.

Gardener’s syndrome is the genetic condition that I have known I have since I was 20. It was the cause of my mother’s death in 1976 from cancer and my sister’s death in 2006 from complications of desmoid tumors. Gardener’s syndrome is a collection of benign and malignant tumors throughout the gastrointestinal tract, bones, thyroid and skin. I have had several operations over the years to remove parts before they were cancer and have had my routine screening every year to detect changes before they advance and become cancers.

I tried not to worry, but with each test result the provisional diagnosis of the CT Scan became more a definite diagnosis.  It was on the 14th October that the doctor rang me to say that he had done enough tests to reach the final verdict that I had stomach cancer with metastasesin the liver. That is the primary cancer in the stomach had spread through the lymph glands and caused secondary cancer in the liver. They no longer were going to operate to remove the tumors (as they had earlier indicated they were going to do) because the cancer had advanced too far. The only treatment option was chemotherapy. So on the 28th October I commenced chemotherapy.

Not knowing what was definitely happening made the 8 weeks of tests a roller coaster ride. One side of the brain said it was nothing, the other asked what if it really is something serious. I felt that I owed it to family and friends to let them know what was happening. This was because I needed support to cope with what was happening and also a small voice in my head kept saying this was a bit more serious than I was willing to believe. Therefore others might need time to process what was happening as well.

I went through guilt. Guilt for causing others distress. Guilt that I might be causing it to be cancer by thinking that it might be. People talk about the power of positive thoughts. Was I by thinking that it might be cancer being negative and bringing this on to myself. And not only me, there is a flow on effect to Mike, the kids, family, friends, work mates etc. Maybe this was all nothing and look at the distress that I have caused everyone. Then my brain would say, but this is not nothing, this is really happening. But then they had not confirmed anything, so maybe it was not happening.

I went through great anxiety. My previous experience when I had rectal carcinoma ended in Past Traumatic Stress. That was a 4 month nightmare of panic, anxiety and total loss of confidence that took a year to get over. What if this time that happens again. What if I cant cope with whatever my future will be. I could not go through another breakdown again.

I went through feelings of relief. For 26 years I have lived with the knowledge of Gardener’s syndrome and the possibility that my demise would be cancer. It was a relief that they years of wondering had finished and I knew at last. Through years of caring for people with caner and providing palliative care, I felt comfortable that I knew what cancer meant and this was less frightening than some other diseases that I definitely don’t want to have. As irrational as that sounds, that is where I was at. But that fed guilt. Did I make it happen?

I felt sadness. Not for myself. But for Mike, the kids, family, friends. This was not something that I in isolation would have to face. This was something that we all have to get through. Each to a different degree. Cancer and death are always confronting, no matter how distantly you are related to someone. I get the easy part. If the treatment is not effective, I get to die and not have to experience it any more. But everyone else has to keep on going. I don’t think that the world revolves around me, but I know the emotions that I have had to address when family, friends, workmates, patients and anonymous people die. They all evoke a level of loss and sadness, no matter how small.

So here I am now. The emotional roller coaster is over. I have my task in hand. That is to do the best with what I have.

My world is now more a physical roller coaster with the side effects of the chemotherapy. That is my now and that is the task at hand. Riding the new journey. Staying in the now. Making the most of the now.  I cant afford to wander into the tomorrow. It is too overwhelming. Too painful. Too unknown.

So my prayer is that God equip me for the tomorrows by keeping me in the now. And that is the wonderful thing that my family and friends are empowering me to do.

Thank you everyone.

Being an “all or nothing” type of person, I am learning a new game. it is called “finding the balance”! Would think it easy, but it ain’t.

It has been drummed in to me that Days 10-14 of the 3 week cycle are my high risk days. As a result of the chemotherapy these are the days that the white blood cells (WBC) are at their lowest count. WBC are the germ fighting machines of the body, the workers of the immune system and also required to assist tissue repair. From Day 7 they are in decline and 10-14 at their lowest.

Tomorrow will be Day 14, the last drug day of this cycle and therefore the end of the risk period. Wednesday will be heralded with a sigh of relief because my body will be allowed to regenerate. The WBC will regenerate during the 6 drug free days before the next cycle, when they get knocked off again! Poor darlings! Thankfully the cancer cells do not have the same regeneration ability as the rest of the body, so they will only suffer! Not poor darlings! This also means my germ fighting capacity will improve and I don’t have to tip toe about as much.

The balance game comes in because I don’t want to sit at home molly coddling myself but I also don’t want to get an infection. If I get any symptoms of infection I have to go to the doctor and will likely be put in hospital on intravenous antibiotics as there is a risk of getting septic fast because the WBC are not there to kill the bacteria.

On Saturday 2 friends, Connie and Karen took me shopping for new bed linen. It was a great. The bedroom looks great, I felt I achieved something and I got some exercise. But then down side is the 5 mouth ulcers and sore throat that I developed on Sunday. What do you do????

The same thing happened last week when I went to work for a day. The next day was my worst. I had so many wacky symptoms because I over did it. (I have made the decision to put work on hold til March. I will do a day on Friday and then Monday and then call it quits for the meanwhile.)

Life has to go on. I want to have some normality to my life. I don’t want to sit at home and do nothing.  I start to loose motivation and the”sick” role creeps on. I feel OK, then I do something and then I feel worse. It is a bit of a roller coaster. I am finding how much the something that I can do is.

So today I am taking it quiet again. I am not feeling too bad. Am monitoring my temperature and symptoms and should things progress I will go to the doctor. But it is frustrating. That is why on Wednesday there will be a sigh of relief.  I will have gotten through the first risk period safely. I would have taken some risks but I would have managed them too so that there was not harmful consequences.

Throughout the past 8 weeks I have sought to make best use of my experiences. I guess this is a way of coping as well as getting good out of what may seem bad.

The past (nearly) 46 years have indeed been a windy road that has had some very steep mountains but also some rolling plains. I am not unique in this, I am sure everyone in reflective mode about their own life would say the same. There have been nightmare periods when I have asked “why me?”. There have been times of great blessings that I have asked “why me?”.

I am now at a place in time where the last 46 years suddenly make sense.

Some dear friends in Maryborough hatched the idea of this website. Initially I was embarrassed and asked “why did they do this for me?”. I still am amazed and wonder, but this aside, I decided that they have given me an avenue to help process what is happening in my life. It is now for me to be creative enough to use it for it’s full potential.

This journal page was hatched from that seed.  In true “Frank Frances” style, I aim to be open in the journaling and this puts me in a position of vulnerability. But in doing so I hope that I can in some way minister to all the amazing people that are opening themselves to being vulnerable and hurt in travelling along this path with me. I treasure their kindness and love and therefore must remain true and honest in response.

In the 46 years there has been a winding spiritual journey also with fluctuating reliance on God. Therefore I warn readers that God will be part of the future journaling. I know some readers may not have the same recognition of God. But I hope they respect that this is my journal and my experience and I respect their choices. I also hope this does not turn them off from reading the journal.

Back to my former comment about my life suddenly making sense. Ten years ago I had a strong sense that I would be given a very important mission in my life. This notion has been driving me to strive for bigger and better positions and a keen interest in leadership. Without sounding totally psychotic, I had grandiose ideas of what this mission may have been. Therefore over the years everything i have done to “fix the world” has not quenched my drive, because it has not fixed the world. I believed I could be “great” through what I could do or give.

At no particular moment, sometime over the past couple of weeks, I realised this mission was not greatness through what I could give or do. The mission is the task at hand, and the greatness is in me being ministered to by others. (I dont mean that in a pompous way.)

The chemotherapy has cut me down. I am physically not able to do what I could. All my mental strength is being used to focus on the now, so as to cope with the journey ahead. I went back to work for 3/4 day and paid heavily the next day. I realised that chemotherapy is fair dinkum poison and that my body is fighting a massive fight to stay on top. I have to treasure my body and keep it in the best state to do the long haul.

I have no idea what the result of the long haul is. I have no idea of what time is involved to get to success, whatever success is. That is…. this chemotherapy may be effective in eradicating cancer from my body, it may just keep it under control for a period of time or it may be that is is totally ineffective and that there is no treatment options left except to let cancer run it’s course.

It is very surreal not knowing if in 6 months time I will be dead or alive. Yes. everyone is in that position, but I have been given an actual nail in my coffin. I have to accept the fact that I have cancer and that it has spread to the liver and that could mean I will be dead in the near future if this chemotherapy does not work. I am not saying this is my wish. I am not saying I am not being positive. I think I am being realistic. I believe I have to accept these fundamental facts.

To those who say “just have positive thoughts and you will be healed”, or “pray to Jesus and he will heal you”, I say it is not as simple as that when you are in my boat. While I make every effort to be positive, it takes a lot of energy to keep that focus when you are drained by side effects of the chemotherapy 24 hours a day, 7 days a week.

In closing, let me say that all the people on this journey with me, through the many ways you express your support, you are empowering me. And with God, I have been able to get this far. So you may therefore appreciate how critical and treasured you are to me at the moment.