We have been back home in Australia for 5 days now. The planned pleasant and relaxing trip from Vancouver to Sydney via Honolulu turned out to be a disaster and a near tragedy. Think I am kidding?
The flight to Honolulu was good if a bit bumpy. S explained my situation to the cabin crew and they found 3 empty seats where I could lay down. Later in the flight the whole cabin crew came to my seat and gave me a card that they had all signed. I felt like a celebrity!
The plane was late arriving in Honolulu and as I left the plane I felt ok. Minutes later as I was being wheelchaired to the baggage carousel I began to feel severe abdominal pain and nausea.
We retrieved our bags eventually then our shuttle phoned to say he had to go, would be back in 30 minutes. Meanwhile I was feeling very ill and needed to lay down. The only place available was a stone slab seat. By this time I was sweating profusely and on the edge of passing out. S was distraught. The terminal was almost deserted and it was getting very late. Finally, the shuttle driver called. S had gone to find help. I begged a passing security guard to help me with the bags and at last got loaded into the shuttle bus.
Naturally we were the last ones to be dropped off. Thank God for Dennis at the hotel. He summed up the situation immediately and soon had us settled in our room. I just collapsed on the bed. I was beat. No sleep all night, abdominal pain kept me awake. My brain telling me I had another perforated bowel and peritonitis. Or diverticulitis. Or some infection. Here we were in the USA with no medical insurance. (No one would cover me).
If hospital was needed, it would be better if I died!
I felt like I was dying!
Next morning I got up to find my colostomy bag full of blood. The pain had eased by now. We decided I needed electrolytes, so S went shopping. It was all I could do to lie in bed. At least I had a nice view of the hotel next door! The bleeding stopped and I slept well the next night. With a lot of help and quite a bit of confusion, we finally boarded the plane for Sydney. Luckily I was feeling better and finally we were home.
It was meant to be an adventure but soon turned into an ordeal. Never again, we both said!
Every treatment available for me has been tried and failed. Chemotherapy barely scratched the surface. The last session being the worst as the nurse fumbled for a vein and missed. This is what chemotherapy achieved….PSA doubled to 530. After 4 sessions PSA is now 466. 8 weeks of feeling like crap, loss of taste, hair loss, moon face due to steroids. My initial instinct to refuse chemo proved to be correct. I am still feeling weak and tired and I have a large red scaly area of skin where the last chemo chemicals leaked into my wrist.
However, I am beginning to feel better again and I am getting more active. My appetite is good and I am not losing weight. We have decided to return to Australia so that I can see my family and be with them for however much time I have left.
A week ago I was not sure that I would be able to endure the flight. I am hoping my fitness will continue to improve as we have much to do before we depart. We decided to have 2 nights rest in Honolulu before flying to Sydney. This will minimize jetlag and time spent sitting in a plane. We are very fortunate in that my sister and her husband are opening their home to us.
It seems that both myself and this blog are coming to an end before much longer. I can see that many people from all over the world have read parts of my blog, however few have commented or even “liked”. I am guessing that may be due to the blog format. I am happy to answer any questions my readers may have. You can email me email@example.com my name is Les.
The 4th chemotherapy session did not go well. The nurse had a lot of trouble finding a vein and the infusion took much longer than usual.
The after effects were no easier to put up with and when the PSA came in it was still 500. Chemotherapy is not working and so, I will not continue with it. Quality of life is more important than quantity. 2 weeks later, the side effects are mostly gone. We met with Dr Y and I advised him that I did not wish to continue with the chemo. I also advised him that we are returning to Australia and my oncologist Dr W, at the Mater Hospital. Dr Y was supportive and optimistic as usual. He agreed that future treatment options are limited and he offered to provide a full medical history with a CD of any medical imaging for Dr W.
My sister and her husband spent a few days visiting and asked if they could meet Dr Y. He was very gracious and answered my sister’s questions. They have generously offered to let us stay with them in their home, for which we are deeply grateful. We fly out in 6 weeks with a rest stop in Honolulu as I don’t think I could endure doing the trip in one go.
Besides, I have never been to Hawaii!!
Seven days after the 3rd chemo session and I am finally beginning to feel somewhat human again. The main remaining side effects are dry mouth and fatigue. I seem to need 12 hours sleep per night. The sense of taste is slowly returning and last night I enjoyed the baked fish, peas and carrots that Stefanie cooked.
We had to rise early this morning for an abdominal ultrasound at 8.00 am. The CT scan report said I had a possible hernia, but it seemed like the ultrasound was looking for other things. The sonographer was a student and the procedure took an hour. She spoke fairly softly and would say, “breathe in” “hold it” and “relax”. Only sometimes I didn’t hear “relax”! She was pushing down in the same place an awful lot and by the end I was covered in goop. Report to my doctor in a couple of days.
Latest psa is 500, up slightly from 480. Not good news but not necessarily bad news either. Hopefully we will have 2 good weeks now and then back on the chemo coaster!
Pain wise, things have settled down with the 50mcg Fentanyl patches and there is very little breakthrough pain. I also seem to be more stable walking and am able to go out for short periods. So, it appears I will make a good recovery from the latest chemo session and therefore I say, bring on the next one! I guess the future of chemo will depend on the psa response, hopefully a significant downward trend.
I find myself thinking of fellow bloggers who have passed on. Overall I feel I am fortunate to have made contact with these brave men who faced their inevitable end with courage and dignity, and were prepared to share their experiences with the world.
Today I received news that my dear friend Jim came to the end of his prostate cancer journey a week ago. I say dear friend even though I never met him or spoke to him. We communicated through our blog pages and occasionally by email. He was a source of so much comfort and inspiration to me. I can guess how much he was suffering in those last days, yet, just 6 days before he passed on he was offering me words of encouragement. Jim, aka “Yapcab” will be sadly missed by many people. He stayed strong and positive to the end. Cancer may have taken his life but it did not beat him. In many ways my journey has been similar to Jim’s. I only hope that when my time comes I can face it with the same courage as he did. To his wife, Lisa, I can only offer my heartfelt condolences. You too have suffered along with Jim. I believe he has gone to a better place and that his pain has ended. I hope that good memories sustain you in the days ahead.
Chemo number 2 has been delivered and this time I feel so weak and lethargic, out of sorts. It is hard to get interested in anything for long and when I get up I feel wobbly and shaky. A couple of nights ago I got up to go to the bathroom and felt very faint. As I staggered back to bed I passed out, banging a rib on furniture as I fell. I have a sore rib as well as the chemo effects. And I took some skin off. My mouth is still very dry and I have bad breath due to the damage to my mucous membranes. However this will soon pass and I expect to feel better in a few days. Latest psa is 290, up by 48 from last time. This could be due to dying cancer cells giving off psa. Anyway I will hang onto that for now. I fancied Chinese today so Stefanie brought home some takeaway which I really enjoyed. So the plan for now is to continue the treatments and hope for a good result.
Yesterday was the first installment of my chemotherapy regime. Besides the usual prednisone I was prescribed dexamethasone for the day before, during and after. My psa had dropped from 247 to 242 in 2 weeks. A pleasant surprise.
We arrived early and I was seated in a comfortable arm chair for the one hour infusion. The nurse painlessly inserted the cannula, hooked up the IV machine and the taxotere commenced to flow. There was no sensation of any kind and the hour passed quickly thanks to an interesting book.
I did not sleep well last night and was wide awake at 3.30. This morning I had a slight headache and a sore back thanks to overdoing it while lifting a box of groceries.
All in all it was not an unpleasant experience and it remains to be seen what side effects are likely to present themselves. Three weeks from now we will be doing it again. 6 sessions are planned at this stage. I have read of some promising outcomes from this treatment, so here’s hoping.
Greetings to my fellow sufferers, blog friends and interested readers. I appreciate your support.
The question we all wonder/worry about and yet it seems to me that the experts never get it right, so, what is the point of asking?
I feel that when the time comes I will know. It is a question so far I have refused to ask, even though it is often on my mind. When i was first diagnosed in 2008, the oncologist bluntly stated 15 years. I didn’t ask. It is now 2019. 11 years down, 4 to go if we can believe that doctor. Frankly, another 4 years would suit me fine,provided I am not in pain, remain reasonably active, retain most of my mental faculties, retain my sense of humour and the ability to be reasonably useful and not too great a burden on my loved ones. Not too much to ask? I am now 72. If I make it to 76 I certainly can’t complain. Many a good person has not made it this far. Besides, I believe in a life in the hereafter, so that is something to look forward to.
I still have things to achieve, a bucket list of sorts. It is not cast in bronze. I want to do some more sailing and I have discovered an organisation that provides sailing for people with disabilities at a very reasonable cost. The days of owning my own boat are gone. I have more cross stitching in the pipeline as long as my eyes and fingers hold out. My latest psa was 247, up from 197 4 weeks ago. Not as big an increase as I expected. Maybe the Zytiga is helping. I have been taking it since my final radium infusion a few weeks ago.
Travel in the USA or anywhere other than Australia or Canada is out as no one will insure me. I don’t know what the record for psa is, maybe I can beat it!! Now that’s something to look forward to!
We saw Dr Y today and I had yet another Zoladex injection. Yesterday was my last radium infusion. PSA was up to 179 from 107 4 weeks ago, so that is a concern. Basically it means the radium is not working any more. The recent CT scan shows no soft tissue metastases and that is a great relief. There are however, signs of skeletal advancement but that was expected. So far no signs of fractures and I am being very careful not to slip or fall as a hip fracture would be disastrous.
All the doctors agree that chemotherapy would be the next option. They are looking at commencing treatment (Docetaxel) in about 5 to 6 weeks. I still feel life is worth living so I have decided to give it a go and see what happens. I can always quit if I want to. I plan to write to Dr W in Australia and ask his advice as returning to Australia is still an option. Meanwhile I have increased my prednisone and I have noticed some improvement in how I feel. Better to be fat than miserable.
Next week I will be back on Zytiga for 4 weeks and it will be interesting to see if any effect on PSA. It is just a waiting game, meanwhile we enjoy the good days and endure the bad ones. I still enjoy and benefit from my needlework, and of course there is always Netflix!
Dr Tildesley was on leave last week so we saw a Dr Duncan instead. This month my blood markers were all within the normal range indicating no problems with liver and kidney function or bone marrow. However there is some concern about my PSA, now up to 107 from 96 4 weeks ago. The concern is that the Radium is no longer effective, however I believe it is slowing down the rate of psa increase. Some specialists think that increasing psa is an indicator to cease radium treatment. After the 3rd infusion psa increased by around 50%. After the 4th infusion the increase was around 12%. So that must mean something. I was given the option to discontinue radium therapy if I wished. I asked him about Lutetium trials but he said i would not qualify. He suggested that we speak to Dr Yun about possible clinical trials and any other available treatments.
After we came home I phoned Dr Yun. He advised that as the radium was “holding back” the cancer to some extent it would be wise to continue the full course. It appears that the only other options available to me after that would be some form of chemotherapy. Before that can happen I need to be rid of all traces of radium.
I have mixed feelings about chemotherapy. Would I be sacrificing quality of life for a few extra months? How well would I tolerate side effects? I have heard good and bad stories about chemotherapy. It sounds like a bit of a lucky dip, but then such is life. Maybe I will give it a go. I can always pull out if I want to. At least I will have given it a try.
I have to say, I really don’t know what psa numbers really mean. It seems they bear no relationship to how I feel or what I can or can’t do. The fact that the rate of increase in psa is reducing makes me think that the Radium treatment is just now having a positive effect. I have read where patients have given up after 4 treatments. Maybe they gave up too soon. Anyway this is something we will discuss with the nuclear medical oncologist.
On the subject of how I feel, I have good days and bad days. That is too simplistic. “Good” days are days when I don’t feel nauseous or light headed, I can walk to the car and enjoy an outing of 3 to 4 hours, and I feel like eating. They are fairly rare and very unpredictable. “Fair” days are probably most common. On fair days I wake up feeling ok but not fancying breakfast so I have a protein drink. If I walk to the car (about 100 metres) I usually feel dizzy by the time I get there. I feel slightly nauseous with little appetite. I can enjoy doing cross stitch as I can do it while resting in bed.
“Crap” days are fairly common too. On crap days I can do a bit of cross stitch or watch tv. I feel nauseous and dizzy when I get up. I often need an afternoon nap even though i might have slept 12 hours, and my appetite is very poor. “Really crap” days are fortunately rare. On these days I feel impending doom, I can only pick at food and I begin to wish it could all be over. I lose interest in everything. It is really hard to describe and I don’t wish to sound morbid but it is what it is. Fortunately these days are rare, but when they coincide with medical appointments it is all I can do to get there and back. Without S to help me I wouldn’t be able to go. She drives, she helps me with my walker. She holds my hand and encourages me to keep going. She makes sure I am nourished.
It is impossible to predict what tomorrow will be like. All we can do is enjoy the good days, make the most of the fair days and endure the crap days. Don’t worry, life is still worth living and there is always hope that tomorrow will be a good day!