Fran's Journal Fran's Journey of Hope

Since last Thursday I have felt the surreal, “this is all detached from me” emotion slowly melt. Now there is a sense of deep sadness and a desire to cry. Cry about what? Anything and everything! I am grieving for what I have lost and may still to lose. It feels like a person close to me has died. I cry if I hear something sad that has happpened to someone else. The cat was sick on the weekend and needed to have leg abscess drained, and I cried. I have lain in bed this morning feeling sad because I am off to start chemo again today. I cry because I am worn out wondering how I can keep facing this chemo. I cry because it is hard to accept that I may die and leave Mike (and everyone else too), just when our lives are the most contented and positive. I cry because there is a new manger in the position that I was hoping to have, but cant because I not reliable enough to work full time at the moment. I cry because there are such exciting opportunities at work for building up the company, that I have dreamed of over the past year and now I cant do them. I cry because every moment of the day I have a bad taste in my mouth, that no food tastes the same, that all food repulses me, that I don’t have the drive to go out and walk the dog every day. I just wish Icould feel like I used to. Not feel tired, not feel nauseated, not have to plan my day around managing side effects, not have to be a slave to tablets, not see handfuls of hair fall out every time I touch my head. I wish I could go out and do some retail therapy. But do I really need any possessions. Why collect more meaningless things just to feel good. Where’s a nice glass of wine and cheese platter? Yuk! I cry because I don’t have the motivation to make Mike’s lunchand juice in the morning, nor cook his meals. I feel like I am bludging and that he has to put up with all my crap not through any fault of his own. Icry because the house is a mess, but I don’t really care. I could just sit and let life pass me by. Why fight?

The down is that a side effect of the Xeloda is excess tear production. While that sounds like I could cry easier, it actually is the opposite. My eyes feel dry, crusty all the time and when I go to cry it physically hurts all around the eyes!!

The exciting thing is this is part of acceptance and healing.

I don’t tell you this for pity. I don’t want you to treat me with kid gloves. I don’t want you to walk on egg shells with me. I want to hear your crap. I want to know what matters to you. I want to be able to encourage and get beside you when things trouble or get you down. I want life to go on. This is healing. It is an important step for me to pass through. And I will pass through it. I am not depressed or suicidal. Nor have I given up. I think that for 3 months I have had to go on emotionally, mentally and physically in the strongest way that I could to survive. My body just wants me to give it an easy time.

Many great friends have reminded me to get “me” time. I will and must do that. It is a bit of a chore trying to organise it. Rick is going to write a letter for me so that I can organise a regular massage. I think that will help me in relieving the head, neck and back tension that hangs on. I am searching for a masseur that will come to the home. That will not do the alternative therapy preaching stuff, cos I am not in to that, and for a masseur that will be skilled enough not to do damage. So that is a task to develop a rapport with someone that I will only meet over the phone initially. There was someone but as she will have to travel an hour to get to me, she is going to charge the earth, so I am trying to find an alternative.

I do still see my psychologist, but with Christmas coming up I have the next appointment in January. I know that if I crash she will make additional time in her schedule to see me at short notice, but I don’t want to abuse that privilege.

So that means I have all my wonderful family and friends to debrief to. I find it hard to ring people and dump tings. I don’t want to make others feel sad. I appreciate that everyone else has the same lot of baggage that they carry. I know that their baggage is their reality and IS just as important as mine is to me. I don’t want to wear others out. This might be a bit of a long journey and I need all the resources I can get to travel. I need to find the strength within myself as well.

Then I get on to this website and see all the amazing people who have taken time out to send a message. This makes me cry as it is overwhelming the love that others give. It carries me, it empowers me. It fills me with a sense of hope. I am ever thankful. I have to do this. How ungrateful I must sound. What a whinger.

God is ever near and is my strength. This is all possible.

I thought I would waffle on about chemotherapy, for those that are not familiar, or want to have more insight into myjourney. Remember that there are many forms, drugs, treatment regimes and methods, so this is only about my regime and is not reflective of all chemotherapy treatments.

The regime involves one day of IV chemotherapy, followed by 14 days of oral chemotherapy and then 6 rest days. The IV drugs used are Epirubicin, which is an orangey red coloured drug. It makes you pee red urine for the rest of the day! The other one is Oxaliplatin. These are both nasty ones and make me suffer the worst side effects. The oral one is Xeloda.

The Oxaliplatin makes it so that if I ingest anything in the first 9 days that is colder than lukewarm I get pins and needles in my tongue and throat and my throat spasms. It is annoying, cos you pour something at room temperature and it might or might not cause the same. Also when you feel sick on a hot day you want something cool and soothing but you cant, it has to be warm!! With the foul taste that it leaves in the mouth I have found that I can generally taste sweeter things than savoury, but most sweet things and drinks are best cold. Therefore the first 9 days are a BIG chore in regards to nutrition.

The Oxaliplatin also causes pins and needles in your hands and feet if come in contact with anything cold. Therefore I have to wash my hands in warm water and get other people to take things out of the freezer or fridge. Generally I get the things and be very quick about it, but if I have to hold something for a period of time or it is hard to get out I get Mike to do it.

This drug is also thought to be the cause of my intermittent partial loss of sight in my left eye. The Oxaliplaitn is toxic to nerves. Rick is puzzled about the eye because it is only meant to affect small nerves, but for some reason it annoyed my suss left retinal nerve. Thankfully I don’t have permanent visual loss. We will continue to monitor that. Rick is going to reduce the dose to reduce the side effects. Generally the nerve irritation resolves after completion of the chemo, or in my case about 9 days after IV but there can sometimes be residual damage. I think this is the one that you can only have a certain amount of in a lifetime because of the accumulative damage that it can do.

The Epirubicin causes nasty vomiting, nausea, taste problems and hair loss. Since Thursday my hair has been falling out and is starting to look a bit moth eaten. That is frustrating and also a bit of a downer. Every time you wash your hair, dry your hair, rub your head, sleep, you find a lovely mat of hair falling out. I still look reasonable, but am considering shaving it all off rather than looking moth eaten. Especially if it continues to fall out at this rate. It is coming on to summer, so I really don’t need my hair to keep my head warm, but would need to be careful with getting sun burnt.

Before giving the chemotherapy, I am given IV dextrose solution and Dexamethasone (dex) and Navoban. The Dex is a steroid to reduce inflammation, stimulate appetite and to potentate the anti nausea drugs. It is taken for about 4 days after the chemotherapy (chemo). As nausea and anorexia was a big problem with the first cycle I am on it before the next chemo to help reduce symptoms. I think it also is helping at the moment with the cancer pain. As the chemotherapy is killing the cancer cells this causes local irritation and swelling and I have been getting a bit of pain in the liver and stomach. Since being back on the Dex, I have had relatively little pain. Yahoo!I I really don’t want to take this one for a day longer than necessary because it is not good for you and can have permanent side effects.

Navoban is an anti nausea drug. It ? caused my migraine last time. It may have been stress related, but Navoban is known to cause migraines in people who have migraine history. Because of that, Rick is changing that part of the treatment. I am not sure if he is using another drug or just going to increase the Dex, give me lots more IV fluids after the chemo and keep me in hospital to treat any migraines. I have the Navoban orally for a couple of days after chemo, then continue with Zofran, another anti nausea drug for the rest of the cycle.

They have added in Nexium, which is used for reflux and stomach ulcers in hope that that might also help with the nausea, anorexia and stomach pain.

The oral chemo is Xeloda. The dose is very low, so I am not having too many horrid side effects from this one. It caused my mouth ulcers and alters my sense of taste, but is nothing like the other ones. because it has to be taken with food it can become a chore to swallow and keep down, especially in the first week.

I hope this journal did not sound too negative. I don’t want you to turn off from reading what I write because it makes you sad etc. I am hoping that it gives insight and sometimes may even be a source of encouragement. I don’t want to suck you dry, nor am trying to extract pity. I don’t need that. So please be honest with me, or even tell me things that you want to hear about.

What was that I was saying about balance! When I wrote last on Tues 11th, I was developing a fever, but thought I could manage the situation. My niece, Heidi who is an Oncology RN was quietly nagging me by SMS all day to do something and not sit on my rising temperature. So off to the GP, who could not find a cause for my temperature of 38, so she sent me off to hospital for investigation. The protocol is to have blood cultures and 48 hours of intravenous (IV) antibiotics to kill off a broad spectrum of bacteria. Having the low WBC count meant that symptoms of infection are sometimes masked and the root of the infection may not always be found. My blood culture was clear and no cause was found.

While in hospital, my oncologist (Rick) wanted to get better control of my nausea, so I was also on IV fluids and anti nausea medication as well as steroids to boost my appetite. It was great to get re-hydrated the easy way – by drip without having to drink!!! Rick said that I can go in anytime to get IV fluids to take the pressure off drinking when I am nauseated.

Rick also had discussion with me about my first cycle. He said that I had had it tough and he could refine the treatment regime to reduce the side effects. So next Tuesday (18th) I start my next cycle and will be admitted for ongoing managementof the side effects. Also he is going to reduce the dose of one of the IV chemotherapy drugs and change and increase the anti nausea medication. This has made me more positive about going back again. Even though I would have gone back anyway, I was getting quite anxious about the next treatment and how I would cope with 5 (or however many) more cycles that I was going to have. I was seriously questioning if it was worth it, particularly if the treatment was not effective.

Being in hospital also gave me opportunityeach day to chat with Rick and gain greater faith in him. I was able to ask more questions about what was and might happen. My numbness is really melting and the reality of the situation is becoming very real. This has led to my need to know more about the chemotherapy.

We had discussion about potential outcomes and the indicators for good outcome. Rick was very optimistic that I fitted in to the 2 positive indicators for a good outcome. As I was young, healthy, fit, working and the liver secondaries are still comparatively small, it increases my chance of a good outcome. He explained that a good outcome means two things – the cancer will be reduced by the chemotherapy and that he will be able to buy some more healthy time for me. He was not talking of cure, he was talking about being able to function and enjoy life for a period of time longer than if I chose not to have any treatment.

He said if it was as easy as taking some vitamins or minerals or having reiki and the other things that kind people have suggested I do to be cured, then he would most willingly give them to me to spare me going through chemotherapy. Rick said he was open to any thing I wanted to try, but warned me that they are not validated cures. I have chosen to continue on the chemotherapy path and to trust Rick. He did though order multiple blood tests for trace elements, minerals, vitamins and other bobs and bibs (8 vials of blood) so that if there is any deficiency we can consider this as an adjunct to the chemotherapy. But at the moment, swallowing the chemotherapy cocktails and the other drugs to stop the side effects is a chore, I doubt that I really want to swallow anything more than I need.

I do appreciate others suggestions as gestures of trying to help me. The only problem is that I perceive that the person is telling me that they think I don’t want to be cured if I don’t take on their suggestion. The thing is that I have had so many well meaning people tell me of cures, I could be full time doing them all. But I am a more conservative medicine person, and will pursue the chemotherapy option.

This is probably enough rambling. I plan to do another journal about the chemotherapy drugs that are part of my regime, for those who are interested in the next couple of days. If you don’t hear from me for a few days, I will be in the Holy Spirit Northside Hospital. I am not sure if it will just be overnight on Tuesday or longer.

Will chat again soon.

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.