Welcome to my new unexpected journey. I have been diagnosed with High Grade non muscle invasive urothelial papillary cancer of the bladder.
On 30.10. 2014 I woke up from a follow up check up of my Urinary system with excruciating pain and spasms in my bladder, Tramadol, Pethidine and 3 doses of Morphine later I started to worry as no one had been to see me and said, had a look at your insides and all is looking good. I had a feeling of impending doom under the Morphine haze.
In the evening the surgeon came and told me that they had removed a small cancer from my bladder, that I should not be too anxious at this stage as most of them are Low Grade and unlikely to invade and spread, it would just by a matter of a monitoring schedule, with perhaps the odd removal. 98% survival rate to go with it. I was pretty shocked and incredulous that it should be me who has such a thing. Not being male, at a ratio of 4:1 males versus females, this is against the odds for a start and the fact that I have never smoked also takes me out of the High Risk Category. Another risk factor is exposure to chemicals of certain kinds and as far as I know this has not been the case for me either.
Before I left the hospital I saw the surgeon again and just the way he said it: " Hopefully it is the low grade and not the high grade" I had a feeling that he expected it to be the latter....
"Don't look at Google" he said, "it does not help."
Me being me, of course that was the first thing I did and what I read about low grade cancer reassured me, but the prognosis for high grade is quite another matter.
It took a week to get the result and damn it I am one of the 2 - 9 % of people diagnosed with bladder cancer who have pulled the short straw and ended up with High Grade. Try and win Lotto with a percentage like that!
My amazing husband gave me a big hug and said "whatever it is we will get through this together".
I told my daughter, at 21 sweet innocence, she believes in positive thinking and looking at the good side of everything, always expecting a positive outcome.
I told the rest of my family and friends about my diagnosis and implications and I am blessed to have so much love and support all around me.
My mother in her 80's at this stage only has the Low Grade version of the story and I have not had the heart to fill her in on what lies ahead. My parents are in the process of selling their home in Germany and moving to the North of Germany. So finding a new home and moving is quite enough to deal with for her. She has had breast cancer a few years ago and is feeling her age. I also know she will be very worried for me.
I told my work collegues and they have been amazingly supportive so far.
How did this all start? I reckon it started last year when I was walking through Switzerland. I somehow did not enjoy the walk as much as usual and experienced a sudden onset severe burning in my bladder, with frequency and stress incontinence. I thought I had a UTI. The weather was hot and I did not drink my usual quantities of water and instead of a large cold beer at the end of the day, I just had a small one, as everything was sinfully expensive in Switzerland.
I took some antibiotics, drank lots, mixed up Ural Sachets and the symptoms improved a little, but did not subside.
Back home my GP could not find evidence of infection, just blood and protein in the urine. I had a series of urine tests including 24 hour urine collection, nothing of note was found.
A scan revealed a kidney stone of 6 mm circumference, too large to pass. I was referred to a Urologist. We decided that it may be a good idea to remove the stone as should it dislodge it was too large to pass through the ureters and I would end up in a medical emergency.
There were delays, as I had a sudden biliary colic in January and ended up having my gall bladder removed. The Urinary tract issues faded into the background for a while.
Eventually I had surgery in April after attempting to treat the kidney stone with a home remedy of large amounts of Olive Oil, Apple Cider Vinegar, Honey and some kind of spice, forgot the details now. Nothing happened and I thought I had been unsuccessful with my attempt at curing myself.
Surprisingly during the surgery they could no longer find the stone. It had disappeared. They found a strand of matter, which they removed and could not explain ( my theory is that that was the dissolved stone) and began to look further around the kidney to try and locate the cause of the blood and protein in the urine. At this point a small lesion of abnormal blood vessels was detected and cauterised.
For some reason this was not sent to the lab for analysis...????
At the follow up appointment my surgeon said that there was an extremely unlikely chance that the growth may have been cancerous and that it may come back, and that one would be irresponsible not to check again in 3 months or so.
I guess I was in classic denial as I wrote off his comments and had cynical thoughts about private surgeons and revenue generation with unnecessary interventions. I also felt extremely washed out for several weeks after the Ureteroscopy, muscle weakness, word finding difficulties, my brain felt scrambled and I found it hard to concentrate, my short term memory was particularly bad for a while.
I blamed it on the anaesthetic.
So I wasn't too keen on a repeat performance and since I had my flights booked to Germany and my walk on the Via Regia planned and the surgeon had said that there was no urgency, off I went on my trip.
I came back at the end of August to a recall for surgery letter and reluctantly booked myself in.
I had had a recurrence of the bladder pain, urgency symptoms while I was away, one hot day, when I did not have enough water to drink and again put it down to an infection or bladder irritation from dehydration.
Interestingly the irritated feeling in the bladder had and 2 weeks post surgery has never really gone away since it began in Switzerland.
So eventually on the 30.10. 2014 I had the check up and here I am, diagnosed with the highest risk bladder cancer. My surgeon with some prompting told me that they had removed 2, not one tumour and that one was 1 square cm and the other 3 mm. The little one looked very aggressive he said. He also said that he had an "inkling" in April that the little growth was cancer. The fact that it is at this stage non invasive is good, but the fact that it is a High Risk cancer means that even with full treatment the recurrence rate is 50 %, the risk of progression and spread 25% and risk of death 20 %. The first line of treatment is BCG. This is the TB vaccine and it is directly infused into the bladder, where you hold onto it for a couple of hours or so. It is highly irritant and toxic and the body responds with a massive immune response, which in turn kills the cancer cell. Not all cancers respond to it however. There is quite a percentage of people who cannot cope with the side effects and stop the treatment, which starts with 6 initial infusions at 6 weekly intervals, check up 6 weeks later to see if there is regrowth, if there is, this is a bad sign as the cancer is not responding to the BCG. If the cancer recurs and progresses i.e. starts to invade the bladder wall, in which case it is likely to spread, my bladder will probably need to be removed and a cystectomy, apart from the inconvenience and aesthetic aspects of having a bag hanging off you, is fraught with complications.
If the check up is clear, then another course of 3 treatments 3 months from the first round, another check up, 3 more treatments again at 3 months, check up, 3 more treatments after 6 months. This goes on for a couple of years. In any case, from now on for the rest of my life I will require 3 monthly invasive ( cystoscopy) check ups, treatment of recurrences through surgery followed by further BCG courses and at some stage possibly a bladder removal.
My next specialist appointment is on the 24.11.2014
Next week on the 20.11. I start BCG treatments. These have been the standard treatment for the past 20 years. No new effective treatments have been developed in that time. I talked to the nurse at the clinic today and she said she had been able to fit me in at short notice as they had a cancellation.
I still have that burning feeling in my bladder and some pain in the kidney, so she suggested having a test to see if I have developed an infection. If I have they cannot start treatment until it has resolved.
I am still really unclear about my situation. What about the little thing they found in the kidney in April? Why did that not go to the lab, why did they not do a Cytotoxic wash to prevent regrowth at that point. Why did he not tell me that he had an "inkling" it was cancer, I would not have waited so long....did he miss the bladder cancer in April as he was concentrating on the kidney, I have had symptoms all year and they did not go away after the kidney was treated in April...What are my real chances? Am I being told reassuring platitudes and is the outlook really dismal for me??? How does one relate the statistics to me....???? Will I be able to carry on working through the treatments, afterwards etc....
So how does one deal with this? A blow it was. Here I am, the sole income earner in my family for now. My husband 82, our daughter Sophia 21, who is just starting University and her little girl Mirabelle 22 months...I have not finished my parenting role quite yet.
I have a massive bucket list of pilgrim walks waiting for me and I may never be able to do another one.
So far I have been through a huge emotional roller coaster ride. Extreme fear, anxiety, despair and for a couple of days a sense of unbelievable rage at the unfairness of it all. The last few years have been really tough with a series of unwanted unpleasant life events and it has taken all my reserves to get through this time and now when everything was finally falling back into place, along comes the big C. I had a huge anger outburst triggered by a little lost key episode and the next day my forgiving daughter left a framed picture on my desk, she had made up saying " YOU WILL NEVER UNTANGLE THE CIRCUMSTANCES THAT BROUGHT YOU TO THIS MOMENT. EMBRACE YOUR FATE " - LEONARD COHEN ( I ADORE THE MAN)
And another one on the fridge by an anonymous writer saying '' EVERYTHING WILL BE ALRIGHT IN THE END AND IF IT IS NOT ALRIGHT IT IS NOT THE END"
I had a therapy session with Dr. Graham Mead ( Enigma ) yesterday. He helped put a lot of stuff into perspective and I felt pretty good after that for a couple of hours or so, then I got an email from a concerned friend and the anxiety was back.
Graham reminded me that my anxiety will distort the information I read and that I needed to put my trust into the professionals who are dealing with this and not fight them, in other words leave it in their hands to treat my condition.
My job he says is to deal with my emotional response to the situation, that is the only thing I can control. He highlighted the need for ensuring quality of life on a day by day, hour by hour basis. The magic moment appreciation...of course I know that stuff, just rarely practice it.
Graham does not believe in miracle cures or running off overseas to pursue promising new treatments and rushing around various practitioners to search for pills and potions. His view is that the asking to be rescued evokes a feeling of wanting to help from these people and you end up spending a fortune on products, which do not change the outcome.
I am however making some dietery changes. Red meat is not meant to be good as it increases the acidity in your body and one should aim for a more alkaline concentration.
So I am consuming vast amounts of fresh vegetables, mainly carciferous ones ( there is a study underway in the US examining the impact of these on bladder cancer). I figure a diet change like this is good for me anyway and does not harm me.
I am drinking herb tea and water like a fish.
In the context I have stopped drinking alcohol, I love my ration of wine every day! A large glass of red would be great to take the edge off how I feel, but somehow it seems wrong for the time being.
Having said that, should I be in a fit enough state to walk my planned Pilgrim route, the Via Baltica/Scandinavica next July I will treat myself to a large glass of Pils on arrival in Germany.
On a couple of nights, when I was particularly plagued by anxiety I have taken a sleeping tablet. I am allowing myself one or two per week if I feel exhausted from lack of sleep. There is a risk of turning to this stuff and developing a dependence. I work in the substance dependence field and am very aware of the implications of taking certain medications on a regular basis, so for me this is a no go zone.
Every day I try and do something nice and live life as normally as possible. I am grateful for those moments when I am focused on something else and forget about my diagnosis and I am grateful for the periods of the night when sleep is restful.
Tonight my New Zealand walking buddy Jenny met me at the Titirangi Library to watch/listen to a free concert of Ukelele Guitar and a home made conversion of a cello to base guitar. The local trio was just fabulous, very low key, gentle and they coped well with the group of intellectually disabled young people who attended the concert. One young woman insisted on dancing and did so within 30 cm of the musicians, no personal space left! They just sang and played their way through it, as one of the caretakers tried to lure the woman away with intermittent shortlived success.
Jenny and I picked up some kebabs on the way home and looked at some pics of our walks together. It was a great evening. Quirky, Jenny said, like one of the evenings on our walks.
Before she left she helped me move my Kamboucha brew. I started it yesterday and set it all up outside, but unfortunately it has turned rather cold, so it did not seem to take. I may have ruined my first attempt, but may be the warmth in the house will set it off....time will tell.
4 days to go until I start the BCG treatment. Unfortunately I am having symptoms of chills, burning in bladder and pain in R kidney. Not sure if I have an infection or if there is another cancer sitting there that has not been spotted. The treatment cannot go ahead if I have an infections, so I have started on a strong antibiotic Norfloxacin on spec really, as the urine test result will not be back until after the weekend, but we need to get onto it for Thursday. Unfortunately my treatment will not finish in time for the Christmas week, so I will miss a week, which is not ideal.
Like in Real Estate, which was one of my career paths for 10 years or so, it is once again all about time and timing.
Work is a blessing at the moment, as I can focus and forget for a while. The worst time is the evening when I try to go to sleep, panic takes me over at that point.
Strangely I feel rather energetic, more than I have done in months. Not sure why that is and I am going through a cleaning and tidying frenzy, rather like approaching birth.
Sophia just got a job over the summer, she is thrilled. There are practical challenges as her first day at work, a training day coincides with my first treatment and it is not a daycare day for Mirabelle and my husband is away in Fiji working. I am calling on a friend to take me to the hospital as I am not sure if I can drive afterwards and Sophia is trying to find a babysitting solution.
Sunday today, had quite a good day after after a good afternoon at work yesterday. Actually got to sleep without having a panic attack in the process.
Ivan and Elizabeth met me in the village with a german friend they met in Fiji, who is currently touring NZ. We visited the new spectacular Lopdell Gallery, followed by coffee at Stripe Cafe.
Then off for a walk with dear Jenny and a visit from my German friend Hannah. I babysat Mirabelle while Sophia went for a run at Piha beach with her recently acquired running friend Hanna.
Still trying to find a home for the cat, I really cannot cope with his miouwing and relentless white fur on everything, which constantly needs cleaning off.
I have decided that I don't really want to talk to anyone much about this cancer thing anymore. For updates, people can look at the blog. I am tired of this dominating my life and it makes me anxious to go over it endlessly. So friends, the best thing you can do is involve me in normal and fun things and if I want to say anything about my health, I will tell you.
It is shit to have to deal with, but I have no option but to front up to the reality, even if I really can't face it at some level.
Oh I think I forgot to mention, I had been worried that I might have an infection and my GP prescribed antibiotics. I took them over the weekend, but the symptoms did not really get better. On Monday morning the results were back and it turned out I did not have an infection after all, so then I panicked as having Leucozytes, Erythrocytes and blood in the urine is indicative of bladder cancer and I spent an afternoon in total fear of the surgeon having missed one of the growths. Fortunately he called me and explained that after the trauma to the bladder lining this was to be expected. Wounds are slow to heal in a wet environment.
It has been a few hectic days. With Christmas coming up and my treatment about to begin, I decided to get superorganised Gitti style and am getting the house up to scratch and the gardener is here today cutting the hedges and doing a general tidy.
I have got into a routine of doing yogic breathing exercises and visualisations to get me off to sleep. Hard work, a sleeping tablet would be a lot simpler and quicker. Last week's panic has subsided to some extent and now I am getting on with it.
My visualisation takes me back to probably the most exquisite "mindful" moment in my life. It was a little interlude on the Le Puy route in 2012, when John and I had stopped for lunch. A stunted oak forest, soft path, lined with stone walls. Gentle sunlight casting speckles of light onto shining leaves and thick layers of soft and fluffy moss. We sat down to a picnic of olives, cheese and bread, what else would it be, we were in France after all! I had just finished my lunch when the tiniest of butterflies with cornflower blue wings decided to land on the back of my hand, folded up it's wings and went walkabouts, tiny tickly feet ( do butterflies have feet???), it walked round and round to my knuckles and back again. The underside of the wings was like the most exquisite miniature piece of art. Delicate minute patterns of peacock feather patterns in a shimmering gold on a light purple background. It must have been there for a good 3 minutes, before a sudden movement, was it John or a breath of wind brought a sudden end to our little encounter and the butterfly took off across the stone wall and landed on a little cluster of white flowers.
Sophia, Mirabelle and I went out for dinner at the local RSA, the end of a very productive day.
I arrived home to 2 phone calls. My birthfather in Germany who is in his 80's and has been poorly for some time is facing a leg amputation in the next few days, very cruel for someone who is just about at the end of his life anyway, skin and bone and immobile. It is terrible how some people end up going through so much Angst as they leave us.
Then I received a call from my school friend in Europe. We have a close connection and she has been feeling shocked, scared, concerned and is wanting to help me. She said on the phone that the time had come for her to be absolutely brutally honest with me about my diagnosis and that a couple of nights ago over dinner at a work function she happened to be sitting next to an internal medicine specialist, described my situation to him and his words were that BCG treatment was pointless in the medium to long term and that ultimately the sort of cancer I was dealing with would invade and then spread to other organs and then is would be too late to do anything. She said he suggested that the only sensible option was a bladder removal and that there was no point in even thinking about having the operation in New Zealand as we did not have the expertise partly because the population was so low that the surgeons would not be doing bladder re-construction in sufficient numbers to be competent. Also we would not have the infrastructure for example physiotherapists that would train you to use the bladder replacement, constructed from a piece of bowel, so that one could void almost normally, rather than having to use catheter.
Charming. I was totally thrown by this. Heidelberg has a University clinic that specialises in this kind of surgery..with all the bells and whistles. For a moment I got carried away with the fantasy of just getting it sorted radically...
Now 2 hours later and my thoughts are that I have made a decision to live here, it is what it is, I place my trust in the treatment offered here, we are not totally behind the moon after all. The operation is a 9.5 hour procedure, sounds pretty major and if something goes wrong having got it done in Germany, I can hardly ask the local surgeons to fix it up for me.
Whatever I decide I need to focus on the BCG treatment tomorrow. The risk of recurrence without it is too high at this point.
Next week I meet with my specialist and we will discuss my condition in some detail I would imagine.
Well the first BCG treatment is behind me. Marianne Lyon, the nurse who has been doing this for 14 years is great. Instant trust in her abilities and knowledge.
She is easy to engage with and talk to and yesterday was the start of a long term relationship with her, well hopefully all going well.
I spent the first part of the morning getting Mirabelle ready for daycare and walking her there. Cousin Fran joined me.
At midday my wonderful friend Jenny took me to the appt and back home again. As it turned out I could have driven myself, but it was nice to have the company. I had been nil by mouth since breakfast. The bladder has to be empty to maximise the concentration of the inserted fluid.
The catheterization was a breeze, the BCG went in, catheter out, instructions for aftercare and new appt time made and I went home. After 2 hours I was to drink 2 glasses of water with Ural sachets and 30 mins later, it was time to void. 2 cups of undiluted bleach are then put down the toilet bowl and left to soak for 15 mins before flushing to destroy the live vaccine. I feel terrible about the impact on the environment with this. Not very Green!
Marianne said that I was unlikely to experience a lot of symptoms after the first treatment, these get worse as the toxins build up over time.
So today I feel great, energetic and healthy. It seems unreal that I have what I have.
I called work and they have put me on standby, should someone call in sick over the weekend.
I received the guidebook for my next walk in 2015 in the mail, so I am going to spend a little more time working on my walking plan.
Then it is time to set my short and long term goals. Sophia got me onto this, it is part of her orientation to her new summer job at LuLu Lemon. She is thrilled about her workplace and the company culture is a perfect fit for her.
Spent the weekend working out my 1, 5 and 10 year goals, including health, personal and work goals, 2 of each, good job. Along with that some daily goals, to keep me focused on the here and now. These include 15 mins of exercise, 3 gratitudes, meditation exercise on going to sleep and 1 other thing, see if you can guess? ........No that is not what I am talking about. One day you will know, because you might be at the receiving end or have been already....keep guessing....
One piece of bad news was the fact that Tinka the 16 year old Ragdoll cat, we have had from 8 weeks of age has disappeared. I decided I could not cope with him at the moment as he is rather demanding and we do not have a catdoor, nor a door suitable for one and he keeps me awake at night miauing. So friends of ours' kindly offered to look after him while I was going through treatment. They gave him a royal welcome, butter on paws, inside for several days, allowed to sleep on their bed etc....gourment food....first chance he had to go outside, he took off and has not returned, this was several days ago now. Contacted "pets on the net" to no avail. Tomorrow I will try the local vets. No response from Titirangi Facebook page. Now I feel incredibly bad about having farmed him out.
Today I saw the specialist. He said that we have to wait and see how the BCG goes, 70% chance of response. Slight hitch, would you believe there is a world wide BCG shortage and it is not guaranteed that I can have the maintenance treatment which is essential for risk of recurrence reduction. Unbelievable. More info in the new year, David said.
He also said that the big unknown was what was going on in the kidney. He referred to the tiny bleeding cluster of blood vessels they cauterized back in April. Was that a cancer or an irritation? So that along with the bladder will need to be monitored forever.
I have had a dull ache in my bladder since the surgery, which he said should have subsided by now. So tomorrow it is of for an ultrasound to see if there is a blockage leading to hydronephrosis.
Then I went to work, good distraction. The afternoon shift was very full on and I even forgot about my cancer for 20 minutes, so that one landed in one of my 3 gratitudes for the day, along with a delicious lunch of roasted parsnip salad with Le Puy Lentils, finelly chopped chard, lemon mustard and honey dressing and sheep feta, made by me from the River Cottage cookbook.
I poured off the first batch of Kombucha and put on a second batch, still experimenting on that one.
My third gratitude?? Must be the fact that I was working with great collegues, who sent me home early.
Ultrasound today, showed large kidney stone in L kidney, nothing else found. Grrr, that one will have to go. I am going to have a go with my Olive Oil, Lemon Juice and Apple Cider Vinegar recipe. Seemed to work on the last one.
Second BCG treatment today. Went to work in the morning. I drove myself there and then home. Shopping on way. Feeling fine so far.
The nurse said she thought there was enough BCG in their stock to see us through the supply crisis. Whew!
John got home yesterday, I was so relieved and happy to see him. I had not factored in the impact of having another person back in the bed. I had got into a routine with the meditation exercises etc, John wanted to go to bed early as he had got up at 4 am, so I went too even though I wasn't really ready for it, turned on the guided meditation sequence, which he found rather unusual. I was still awake at 1.45 am and then woke up every time John had to get up to visit the little boys room...up at 6 am to get to work on time. Feeling somewhat jaded from lack of sleep.
I still have the dull ache in the kidney region and now a pain under the ribcage, where I had discomfort before the gall bladder came out. I remembered that they had found a spot on the liver last year, which they thought wasn't anything unusual and I have had fleeting moments of anxiety about that today...what if there is something ominous elsewhere in this body of mine...
Oh well, have to deal with that one if it does not subside soon.
3 days off to look forward to now. Great! The social calendar is brimming for the next few weeks.
3 hours after the BCG treatment the side effects are kicking in. My bladder on fire and I am sweating all over and feel rather washed out. Drinking loads of camomile tea and Ural sachets dissolved in water. Panadol and there is a slight improvement after an hour....2 treatments down and 4 to go...hope they don't get too much worse. This is not pleasant....
It suddenly feels rather serious again, the last week or so I started to feel more hopeful about my diagnosis and future prospects, but the aftereffects of the treatment leave me a little despondent. If this is how it is going to be for years to come, it is not fun. I do hope the burning will subside after a few hours...and I do hope this effort is worth it and the cancer does not come back.
Hoping to hear from my specialist after the weekend to let me know about how to proceed with the kidney stone problem.
Gratitudes for today:
Wonderful Sophia graduated from her Fresh Start course at University today. She has done so very well with a B+ average and has been accepted for Uni next year.
Worked with a great team this am, I am very fortunate to have a job, where we can be open with each other.
Summer is breaking through at last! Tonight is toasty on the deck and we have a dinner of cauliflower curry with egg, courgette and tomato salad, chicken Tandoori nibbles on the BBQ to look forward to.
Monday am and I am feeling a lot better. Friday wasn't too bad after a sleepless night of frequent toilet visits and ongoing burning sensations. Saturday pm another surge of flu like symptoms, swollen lymph glands in groin, abdominal pain, kidney pain, metallic taste in mouth and chills, low mood, I went to bed for the afternoon. Sunday was ok, a friend visited and we strolled around the Titirangi Market after babysitting Mirabelle in the morning which included a trip to the local playground.
In the afternoon I had another little spell of chills, but they soon subsided.
So back to work this pm. Made appt with GP this am to discuss the liver spot they found last year. I am a bit paranoid now about what else may be lurking in my body...
GP said to do another ultrasound and referred me back to the gall bladder specialist. In the meantime blood results came back in normal range. I felt full of energy and had a great start to the week. Today Thursday off I went to my 3rd BCG treatment to be told that they were running out of BCG this week and that there was a world wide shortage. I knew about the shortage for the last 4 weeks and was told by the BCG nurse that they had sufficient stocks in Auckland to see us through the shortage of anticipated several months time lag....so this was a blow. She said that if the pharmacy had told her that they were running out, she could have organised a regime where the full dose of BCG was reserved for the induction clients and that the maintenance clients could have had lower doses, which do not seem to compromise outcomes, but falling short in the initial induction period does. My distress level just shot through the roof again, I am furious. I only received 2/3 of the normal dose today, because they were having to "spread it round". I should have had a 1/3 only, but I was at the end of the day and part of the vial would have been wasted so I got a little extra. Unsure, whether there is enough for me next week....The other option is chemo, which is rather less effective and does not affect the risk of invasion of the cancer, it slows down recurrence in about 50 % of cases. I spent the afternoon ringing round the country to see if anyone had 3 vials of the stuff for me to see my course through to no avail.
Now I am exhausted emotionally once again, which does not help recovery. I feel like I am pulling the short straw on all fronts at the moment.
Did I mention the cat reappeared at my friends' house, such a relief. He must have been hiding somewhere, he looked unscathed and well fed.
The BCG treatment yesterday at only part of the normal dose was infinitely more tolerable than the full dose last week. Hopefully it is effective and the fact that I don't react does not mean that it is not working...
My attempts to source BCG around the country have failed. I am appalled at the lack of forward planning to manage existing supplies, when it was common knowledge from 2012 that there was a shortage looming. Other countries like Canada introduced sensible rationing a while ago. Why has NZ kept it's head in the sand???
I tried to source BCG overseas, to date to no avail. It is being made in India, but they use a different strain of the vaccine, so not sure if it is safe/effective to swap, no research to substantiate this. I got as far as finding an indian pharmacist that would import it for me...but not game enough to go ahead, plus since the product is not licensed here I probably would not find anyone willing to install it.
Fourth BCG yesterday, again a partial dose. The nurse said they were rationing and she had been told by the head urologist that everyone was to have 1/3 dose only....which is not exactly in line with the rationing policy they supposed adopted ( since the media started to ask questions last week! ? Coincidence?.
I have emailed Merck Head Office in Germany to put pressure on production/supplies and spoken to the reps in Auckland also. I am doing as much advocacy as I can and the BCan Consumer Network for Bladder Cancer is stepping up the campaign too. However time is of the essence for me as I am in the crucial early treatment phase and I need supplies now, not in 6 or 9 months. I cannot buy BCG privately in NZ as Pharmac control the import and distribution.
This is the email I have sent to the head of urology in Auckland:
In the middle of this I heard 2 days ago that my birth father had died. It was very upsetting to hear as he died in a distressed state. He had had his leg amputated a few days earlier after an attempt to resurrect a previous bypass graft had failed. According to his wife Ellen he was very agitated and disorientated and did not pass peacefully, which is always sad I find. Death can be dignified if everyone is prepared...
This pm I will have my 5th BCG treatment, well I hope, still no update as to how much of a dose I will be getting.
Was interviewed by Radio NZ National Programme yesterday. Here is the link:http://rnz.to/1GMVkjH
Again partial treatment today...not much inflammation showing in my bladder, only a trace of Leucocytes in the urine for the first time today and my inflammatory markers are low...
Women are less likely to respond to treatment too...all sounds somewhat ominous. The only time I felt like the BCG was doing it's job was after the second treatment. It really kicked ass that time.
Today again I don't really feel anything.
The nurse also told me today that there were going to be supply issues with BCG well into 2016! Bugger.
This is bad timing and the full extent of the fallout of this will not be known until a couple of years down the track, when all of a sudden there will be a surge of cystectomies, wait for it!
I will not be one of them though! I have other plans for getting off this planet, a cystectomy is not an option for me.
Oops, Christmas has come and gone. Overshadowed by the last of my BCG treatments. Got 90% of a dose on xmas eve. Pretty strong reaction with extreme bladder burning and lots of blood in the urine for the first few hours. Still pretty sore on Christmas day, but manageable with some Panadeine.
Christmas with family was lovely, not at our house this year, which was a relief due to my state of health.
The best xmas present was to be momentarily cancer free, I think, BCG behind me, even if it was at a lower dose...I loved my Leonard Cohen CD and DVD of Leonard Cohen in Dublin. John also bought me a snuggly Lululemon Yoga pullover and Sophia bought me a superb raw food cookbook The Unbakery....looking forward to more deliciousness....Niki John's daughter and her family bought me an interesting looking book about Irish pilgrimages. Can't wait to start reading....
Had a follow up session with my urologist, who had caught the brunt of my rage over the past few weeks fuelled by the BCG crisis, but also the complexity of my situation with bladder cancer, kidney stone and likely kidney tumour back in April. I had a lot of questions regarding the diagnostic process and the slowness...with which my condition was diagnosed, as well as future treatments and their implications. He confirmed that the 1 mm growth they removed in April was most likely high grade cancer and likely to recur, bummer. Hard to monitor too as often asymptomatic. Stone in L kidney, he does not want to touch, as he does not think it is a good idea to poke upwards, as there is a chance of spreading any remaining cancer cells in the bladder upwards.
See his point. He did offer me a second opinion and even though I think it is overkill, I will go ahead with it.
So back to work this pm!
My goodness, after 3 days back at work I am exhausted. Exhausted at work too. An overwhelming feeling of fatigue...checked out the Consumer Forum and it appears to be quite a common feature for about 6 weeks after the treatment. Lots of people get it during the treatment too, but not so for me. So this came as a bit of a shock. I am in a bit of a numb state about the whole thing now...difficult to cope with the exhaustion.
I don't like it like this!
Well we are into the New Year, and not without a sense of trepidation for me. Lots of ifs...
The fatigue I mentioned in my last post was exacerbated by muscle weakness, nausea, flank pain, pain in ureter and bladder and headache and my specialist thought it was most likely due to a UTI. Damn. So I ended up on a course of Trimethoprim, which seemed to kick in after a day or so and now 3 days later I feel much better.
Had an ultrasound yesterday and the stone is still there, everything else looks ok, but you can't see the tumours on that anyway. I had been worried that I might have something wrong with my liver, as I feel a bit nauseated after some foods and have a niggling pain under the ribcage. The bile duct looks clear. They did find a spot on my liver last year and with the cancer in the urinary tract thing I am worried the spot may be sinister too. It is highly unlikely to be linked to the other one though.
Everyone is telling me I look better than ever, how absurd in a way as inside I worry chronically, my thoughts are almost never clear of the cancer and it's risk to my quality of life and survival.
Meanwhile Green Smoothies, loads of liquids and minimal alcohol, don't even like it that much anymore....hardly any meat, puts me off really.
Below is a link to a very interesting article, which advocates for a different BCG regime and improved outcomes from 60% to 80% reduction in recurrence over a couple of years or so.
Basically in a nutshell it suggests that having full doses fortnightly, not weekly for 6 weeks, holding the BCG longer in the bladder, starting treatment after 2 weeks, reduces side effects, improves outcomes and appears to eliminate the need for the tedious 36 month maintenance schedule. Wished I had read that one before, would have been keen.
Gosh, January is already half way over and out. Eventually my symptoms subsided from the 1.1.2015, but interestingly my liver function tests deteriorated over the last 3 weeks. Likely to be BCG related, probably had a slight systemic reaction to BCG, not so good, as I may not tolerate it in the future.
I decided to get a second opinion on my situation and am I glad I did. That was yesterday.
The specialist I saw, said there were a lot of unanswered questions, from the symptoms I described, he believes I have Carcinoma in Situ as well and that we need to do bladder biopsies, which have not been done so far....he also feels it is urgent to have a contrast CT scan to see what is going on in the upper urinary tract and abdomen. It is likely that if I have CIS as well, this will have been there for 18 months and the worry is that the cancer may have become invasive as it tends to be aggressive. I have serious concerns about my previous specialist and the fact that he did not biopsy, even though I asked that question....
So next week CT scan and on 4.2.2015 resection of previous tumours to make sure nothing was missed and biopsies from 4 areas of the bladder, then it is a wait and see...for a week or so.
I don't think I can stand much more anxiety.
Otherwise, going to work as usual and trying to just get on with life. I do feel a little tired, but not too bad overall.
Well, I did an about turn. I spoke to my original specialist last night and I have decided to stick with him. We have a pretty good relationship now and he is getting the hang of how to deal with me. Before I made my decisions I consulted with a friend in Auckland and a physician friend of mine in Germany. David, my specialist has a somewhat different view from the specialist who gave me a second opinion. Yes, it is possible that I have CIS, biopsies may not necessarily hit the offending sites and after BCG the bladder looks inflamed so it is impossible to locate areas that may be of concern. There is also a risk of seeding cancer cells during the biopsy trauma, makes sense to me. In any case, the treatment is BCG and I am having that anyway. He also said that he had never understaged a cancer he resected and that none of the growths he resected had cancer cells left behind. He said the statistics were from surgeries performed in the States and that there were no NZ stats anyway. That sounds good enough to me, I am really not keen to have another round of major trauma to the bladder, if it can be avoided.
So I am sticking with David. I had a bit of a sense that the second specialist was rather keen on bladder removals as an intervention and from my reading, this is not necessarily all that effective in the medium to long term...
Tonight I feel tired. 2 busy days at work and all that cancer thinking and researching is exhausting.
Am having the contrast CT scan next Tuesday.
Contrast CT scan showed some cysts on liver, the liver spot unchanged from a year ago, everything else unremarkable except for a 5 mm sclerotic focus, i.e. a bone outgrowth in the pelvic area ? metastasis....my urologist got a second opinion and I also spoke with my GP and the consensus was that this was just a "bone island" not a malignant outgrowth and that malignant growths with my cancer would manifest in a bone destruction way, not an outgrowth....prostatic cancer however shows as an outgrowth.
Well for now another hurdle is out of the way and on February 14th I will have a rigid cystoscopy under anaesthetic and a possible biopsies of the bladder, then if I get the all clear, more BCG. So for now I have 3 weeks "off" and am looking forward to a weekend in Wellington with my friend Anna to do some serious planning for our pilgrim walk on the Via Baltic/Scandinavica in July.
Enjoying the break from the cancer treatment in spite of ongoing slight bladder burn, which acts as a reminder. Had a great weekend in Wellington with Anna, organising her gear for our walk and just hanging out together. So on Monday next I am booked in to have a Flexible Cystoscopy for a preliminary look to check for regrowth and then we work out whether or not to proceed with the invasive approach which includes biopsies of the bladder wall the following Monday...hopefully it all looks good in there and I am spared the surgery on this round. I don't like what the anaesthetics do to my brain and would prefer to avoid one if possible.
Flexible cystoscopy today and it is all looking good in there! Phew! My specialist seemed really chuffed. It was great. So no rigid cystoscopy/anaesthetic/biopsies next week. We decided to flag that on this round. So back to more BCG and on April 20th I am booked for a rigid cystoscopy, uteroscopy, ? biopsies and ? removal of kidney stone....
Well for now I will enjoy life.
Second round of maintenance BCG today. Last week was very tolerable, 1/3 dose, 6 hours of bladder burn managed with gallons of kidney and bladder tea, Ural sachets, water, Panadeine and 1/2 Lorazepam tablet, but today kicked in rather more severely. Went to bed for the afternoon and feeling a little better now. The burning was quite bad and I felt very tired. No visible blood which is good.
Still having some issues with the BCG nurse. She insists that the protocol is 6 weeks induction, then 6 monthly treatments. I rechecked the best practice guidelines put out by Dr Lamm in the States, which most treatment providers follow and it is definetely 6 weeks induction, maintenance at 3 months, 6 months, 12, 18, 24, 30, 36 months, then yearly to 5 years and then every 2 years to 12 years with initially 3 monthly checks, reducing to 6 monthly, then yearly if no recurrence.
Have emailed my specialist to make sure I get booked in for the May maintenance round. Very irritating to have to battle like this. Looks like the whole patient population has been missing out on the correct schedule, my hunch is that the 6 months was interpreted as a gap, rather than treatment at the 6 month point from start of induction course.
Working on my Via Baltica/Scandinavica planner to distract myself. Rather a lot to arrange as far as accommodation goes.
Last BCG treatment this am on this round. My husband is in hospital overnight with a tummy bug/dehydration/chest infection. It has been a very long hot summer in Auckland and he has gradually felt more tired.
Looking forward to a little patch of normality!
Our daughter and granddaughter are spreading their wings, moving out of the cottage behind our house to go flatting with another mother and baby friend. Big step, but one that totally makes sense. Fortunately it is not far from us, so we will continue to have time together.
Our next project is what to do with the cottage, get a tenant, set it up as a holiday rental...lots to think about.
Easter Sunday 2015
Feeling tired and pain in R kidney and bladder burning, shivers...not sure if this is a little BCG attack or recurrence of the nasties. The check up on the 20th of April will no doubt clarify what is going on.
Read a person's blog today, who was a fit 71 year old when he was diagnosed with the same type of cancer. He kept an online diary for some years and then the entry just stopped....what might have happened to him. He reported numerous recurrences and increasing side effects from BCG treatments. Not a good thing to have read. Off picking grapes tomorrow and then another day off on Tuesday. Take it easy mate!
Day after Easter Monday 2015
What an eventful grape picking day! More dramas! My 83 year old incorrigible husband John decided to do his usual routine of tipping the grapes into the shute, which is positioned by the cellar door and accessed by standing on the wine cellar grass roof. He lost his footing as the grass was long and disguised the edge of the roof and tumbled 1.5 metres down onto a lumpy grassy slope being scraped by a rose bush on the way. I did not see the fall as I was in the vines picking grapes.
Neck sore, hip sore, not great at his age with a history of osteoporosis and previous spinal compression fractures. So the ambulance was called, they came and undertook a dramatic rescue with stiff collar and stretcher. Long ride to the hospital followed by long waits in extreme discomfort, xray, CT scan and more waiting. In the end thankfully no fractures were found, but when the collar came off John was in extreme pain as all the muscles on his back had ceased up. He ended up staying the night as it was not possible to mobilise him to get him home. Now he is home after a physio workover, had lunch, pain relief, shower and a sleep. This will take some time to resolve!
Life never seems to be dull in our household.
Just got out of a 1 night hospital stay. Had Ureteroscopy, Cystoscopy and Bladder biopsies.
The kidney looks great, so do the ureters, but unfortunately red spots were found in the bladder wall and biopsied. Now I have to wait up to 10 days to find out if these are a reaction to BCG, which does happen or Carcinoma in Situ. If it is the latter, this does not bode well as it would mean that I am not responding to BCG...and a likely outcome will be bladder removal. I am rather worried. In the first instance I would have intravesical treatment with BCG and Interferon, which would allow me to go on my trip and on return I would have another check and possible bladder remove. I hope with all my heart it does not come to that, as my life would be much less pleasant and significantly shortened as a result.
Leading up to the check up, I had 2 weeks of discomfort, likely to be BCG related, fatigue, muscle weakness and pain, joint pain, chronic headache, midnight insomnia and some bladder burning. Strangely the symptoms subsided quite suddenly after I consumed 2 glasses of french champagne last Saturday, haha...
So for now I wait...
Thank goodness! I got a text from my specialist yesterday pm and the red spots are not cancerous and most likely a BCG induced irritation. The relief is immense. So now back to the 3 monthly grind of cystoscopy, 6 monthly cystoscopy/uteroscopy under anaesthetic. BCG again next month and again in November...lets hope we can keep the beast at bay.
Anzac day today. I ended up calling in sick for work as suddenly I felt utterly depressed about my situation. My daughter and granddaughter have gone flatting from the little cottage behind our house and with my husband having been pretty knocked around by flu and a fall off a roof at the age of 83 life has suddenly changed drastically. After the initial euphoria of being clear on this round of course I am now back to the reality of 3 monthly checks/anxieties/uncertainties and the relentlessness of BCG treatment and simultaneous uncertainty over it's supply.
John thought going to work would be better for me than sitting at home moping. Well quite right, so I dusted myself off and off I went...and of course it is quite true. Having responsibilites beats hiding from reality.
Worrying developments. I saw my GP 3 days ago as I had had a constant headache across the front, with pain behind eyes and scalp sensitivity, neck and shoulder tightness, Temp elevated and night sweats, as well as worsening joint aches. This has been going on for 10 or so days after a few days of R abdominal pain, which eventually resolved....A mild headache had been present for 2 or 3 weeks and after the anaesthetic, ureteroscopy, cystoscopy and biopsies this got worse. Normal pain relief would help for a few hours only. Non steroidal antiinflammatories again just provided temporary relief.
My GP shipped me off to the hospital to be worked over, endless waiting, bloods, CT scan of head, xray of chest/neck over and over explanations of my situation to at least 5 different doctors none of which had a clue about BCG treatment and none of them seemed interested. They excluded a brain tumour and neck problems and then were quick to label the headaches tension headaches and offered me Amitryptiline to prevent future headaches. My blood results which had been perfect 2 weeks ago have deteriorated on the liver front in all 3 crucial areas and this points to a BCG related problem. This is the first ongoing headache I have had in my life, why should I start on antidepressants with nasty side effects if we don't even know what the cause of these is. They would not speak to my urologist and I had to ask for them to speak to an immunologist. This was done by a junior doctor who twice got the BCG info off me and obviously did not get what it was all about and what the risks of treatment entailed. I suspect a lot of the info got lost in translation.
In the meantime the headaches, nightsweats, joint aches and temp continue. I am now seeing an immunologist privately early next week and the concern is that I may have more than the BCGitis last January, where one area of liver function mildly increased and then settled very quickly and ended up better than ever just before the recent procedure. This is in spite of a small amount of wine being consumed!
What we may be dealing with here is BCGosis, where the Bacillus has attacked the liver and this would mean no more BCG treatments and months and months of an evil antibiotic to treat TB. Often the invasion into the blood stream is caused by trauma, i.e. biopsies, which is why some surgeons don't biopsy so soon after a treatment....one tries to play it safe, but potentially the patient is more at risk as invasion of the bacillus results in having to discontinue the BCG treatment, which then increases the risk of recurrence no end. So just when I though I could relax for a while, here we go again. In short my BCG treatment next week has been cancelled due to this and in the meantime I still have the headache.
Things are going from bad to worse. The headache last night was so extreme I could not bear to put my head on the pillow as it made it sore.
This am I had my repeat liver function test and the results are concerning. The function has deteriorated since Tuesday quite significantly. I spoke to my urologist and he has ordered an Ultrasound for Monday and I will be seeing him as well as the immunologist. It may be that this is a reaction to taking Brufen and Paracetamol off and on, it may be that I have an obstruction in the liver/bile duct area, it may be that I have BCG sepsis, there are a plethora of potential causes. No idea. I feel mildly nauseated and lacking appetite, which is rare for me. It is strange this is happening with such speed. This is all quite depressing. I just have to wait and see, yet again, seem to have had to do a lot of that recently.
My husband is still sore with his broken rib and bruised back. What a pair! We were due to attend our shared dinner group meal on Sunday and have had to bail out. The food was going to be Macau. Shame, it sounded so interesting and I was looking forward to it.
Tomorrow between us we will be babysitting Mirabelle, while Sophia goes to work. Good distraction. Hopefully I will not feel worse.
Off to hospital now to be admitted. Auckland City Hospital this time. Suspected disseminated BCG infection/sensitivity or other causes??? Less likely. Terrible night. Excruciating headache. Took one Tramadol on Dr advice, which made it worse. Let's hope they can sort this. My anxiety level is rising by the minute.
2 Whirlwind days. Exhausted now. Got a great reception at Auckland Hospital, the Drs arrived before I even had time to get changed into my gown. Ran every bloodtest under the sun, gave me anti inflammatories immediately and for the first time in 2 weeks the dreadful headache subsided and I started to feel like a fraud for being there. They re assured me and said that there was obviously something rather wrong, but that they did not know what it might be. The liver function tests improved across the board by about 20 % from 3 days ago, so that is encouraging. They wondered whether I had viral hepatitis ( still waiting for blood culture on that), a blockage ( excluded as ultrasound fine), a massive immune reaction to the BCG ( Cytokines gone mad) or a BCG sepsis of the liver and the meninges ( ugly) due to the severity of the symptoms. Still unclear I was discharged on Monday am with follow up visit to my Urologist David, who said he thought that this definetely was associated with BCG in some way, but unsure whether it was purely inflammatory or due to disseminated sepsis. After the visit with him I saw an immunologist Simon, who David had referred me to. Simon was outstanding. He spent one hour with me, examining me and going over my case notes and blood results with a fine toothcomb. His deduction was that since I had a milder version of this kind of thing back in January 2 weeks after the first round of BCG and since the blood results had improved a little and since I was responding instantly to anti inflammatories we are most likely dealing with a Cytokine massive immune response. He believes that with sepsis the blood results would have deteriorated and I would not feel so much better after an anti inflammatory. Makes sense. He thinks it is unlikely to be Viral Hepatitis, but blood results have not come back on that score. So for now continue with anti inflammatories, take it super easy, eat lots of grated beetroot and test bloods weekly to monitor trend. If they continue to improve this would confirm the inflammatory theory. Steroids may need to be added, but wait and see for a couple more days.
He believes it is unlikely that I will ever be able to use BCG again since this reaction occurred after a 1/3 dose and was much stronger than the reaction after the higher doses during induction.
Bugger, that means that the most effective bladder cancer treatment is not an option for me now.
I just have to make sure I don't get a recurrence somehow. Lots of creative visualisation and meditation is all I can think of along with gallons of water and green leafy veges and beetroot.
Off work for another week. No sickleave left...unclear where to go with all this.
This is getting more ominous by the day. Bloodtests 2 days ago showed a sharp deterioration in liver function. GGT 221 Alk Phos 295 and ALT 391. Spoke with both Urologist and Immunologist. EBV blood result positive but equivocal as not sure if acute or remote infection and I had Mononucleosis in adolescence. MCV result also equivocal....retest in 3 weeks time, which does not help me now.
So ? viral, ? toxic reaction to Paracetamol/NSAID??? as I took slow release antiinflammatories when in hospital and afterwards as it was the only thing that took the terrible headache away. Drs okd using it and prescribed it.
My liver function had slightly improved after Waitakere Hosp and Auckland Hosp. During those 4 days I did not take any pain relief and just suffered the excruciating headache. The Dr at the hospital said the pain would do me more harm than some NSAID's...well may be not.
I had probably taken 3 g or so of Paracetamol most days over the preceeding 2 weeks to deal with the headaches and also took some Brufen, so that theory may wash. May be a combo of both viral and drug toxicity and then there is still the question of BCGosis.
So the upshot is that I will see a liver specialist next week.
May be that will shed more light. I am very worried about the worsening of the liver function and have stopped all meds including Turmeric supplements.
Grrr, just got yesterdays blood results and the ALT has risen a whole lot more in 3 days to 538. GGT 214, ALK Phos 287, miniscule improvement here. Lymphocytes 6.35 down fro 7.2 and Monocytes normal now at 0.81. Neutrophils though down from 2.99
The nasty headache returned in the early hours of the morning along with stiff and painful finger joints, no more temp or nightsweats....
Texted my urology specialist. He now wonders about autoimmune hepatitis??? Hopefully not. Seeing GP tomorrow, more blood tests tomorrow and liver specialist on Tuesday. I am rather worried.
Hopefully this is some kind of viral response that settles quickly and has peaked please, no more elevations from current positions. The only elevations I like are climbing hills and mountains when walking!
I saw my family Dr Michelle today. At last it was an appt with her and not the locums I have had to contend with over the last couple of weeks. Michelle straight away looking at the results, which she had obviously studied carefully prior to my appt, said she thought this was a very viral picture and that she thought it was due to the CMV virus, which she said is very catchy, usually spreads through childcare centres and tends to affect kids in a minor way only. In short I probably got it as a present from my little granddaughter, if it is indeed this virus, which the bloodtest came back positive for. She also said that it can affect the liver and that the liver function can get very deranged indeed and that it can take months and months to normalise, but eventually tends to. Since the BCG treatment stimulates the Immunsystem to destroy cancer cells, the body may also react in an exaggerated way to a viral threat, hence the "overreaction" to the virus. This sounds sensible to me, but she said to wait and see what the liver specialist says tomorrow.
So I am drinking gallons of milk thistle and dandy detox tea and eating light liver friendly foods along with more green and red smoothies.
Had more bloodtests done today. Suspect the liver enzymes are still rising as I now have abdominal distension and can definitely feel the liver under my ribcage and it is tender to touch. BCGosis theory has faded into the background.
Overall morale improved as I will be over the moon if this is it and is going to get better. Just no Pils after a hot day on the trail in Germany. What a crime!
At last good signs on bloodtest. ALT down to 375. GGT and ALK PHOS slightly down too. But lymphocytes back up and Neutrophils dropping. C reactive protein still 7.
Woke at 4 am with a surge of symptoms, headache, sweats, these subsided again after breakfast.
At last long awaited clarity. Severe CMV Acute Hepatitis confirmed. No other concerns with blood results. ALT down to 266 and GGT and ALK Phos continue slow downward trend. Extremely tired. Slept 1.5 hours this pm and 11 hours last night. So now I just focus on recovery.
But wait! Said the immunologist. Acute episode of CMV is only confirmed once the bloodtest shows that seroconversion has occurred. So I have to wait until next week to have yet another bloodtest for that! In the meantime liver function tests are improving, albeit my Neutrophil count has dropped further and is now 1.19....not great for fighting off those winter bugs!
The seroconversion did show that I had acute CMV infection. However immunologist believes that I also had a systemic reaction to BCG and likely toxicity to Paracetamol/NSAIDs...
So have contacted my urologist as the BCG oncology team of Dr Lamm's in the States suggested switching to heat killed BCG. This has not been done here, but looks like they may actually do it for me.
My cholesterol levels have gone nuts, from being normal in January. Again this is a likely byproduct of the hepatitis and will hopefully settle. CMV can cause Atherosclerosis, so I hope I did not get that one, as hardened arteries cause heart attacks and strokes.
Back at work progressively stepping up from 2 to 3 to 4 shifts. Pretty tired when I get home and have not done any walking yet! Due to jump on a plane in early July to walk 600 + km....I hope I can manage that this year. Just have to wait and see and play it by ear.
Well, one more sleep and my friend Anna and I are off on our walking adventure. Just had to get over yet another little health hurdle, cold, chest infection, 3 more days unpaid sickleave, this is getting embarrassing to say the least, but well enough to fly now. Making the most of this little window, unfit as I am on this round though...
Back in NZ after completing 470 plus km of the Via Baltica and Scandinavica from the polish border to Lueneburg in Germany. I was less fit than normal, but finally my cough resolved after 2 or 3 weeks in the summer sun and fresh air. During my time away my husband had unexpected heart surgery and has ongoing complications requiring 2 hospital admissions since my return. Work was a shock to the system on this round and my follow up cystoscopy had to be postponed due to sudden gynaecological issues. Ultrasound today showed inflammatory processes, unclear origin...is it from the BCG cystitis, which never resolved, but was alleviated by a large glass of Pils after our walking days, is it another Cytomegalovirus related matter...or something else. Ominous and painful and uncomfortable...and worrying. Furthermore BCG is yet again not available...according to Merck representative SII Onco from India is sitting on the shelves in New Zealand and the urologists have not asked for it to be delivered to hospital pharmacies. The rep said she had organised for Pharmac to bring it into New Zealand after I alerted her of the availability in India. There must be politics at play here. Interestingly a new immunotherapy product is being registered for use in New Zealand in 2 days time. It is partially funded and would cost $ 8000 to $ 10 000 per round of treatment. The user is to pay alternate rounds of treatment and it needs 8 rounds to establish it's effectiveness in one's case. BCG by comparison costs under $ 100 dollars per vial and a vial is shared between 3 patients....can't help being cynical here about the potential pharmaceutical profits underpinning the supply issues of BCG. Anyway. Time to go to bed. Jetlag keeps on catching me out.
Gynaecology appt was a non event. Slight prolapse of vault and age related degeneration ha ha.
Cystoscopy clear. Ongoing irritation and burning in bladder and urethra. Annoyingly uncomfortable and a present reminder of my condition. CX bladder test result shows a change in value into the grey area recommending further checks...may mean abnormal cells development north of bladder, i.e. ureter or kidney...awaiting go ahead on heat killed BCG, possibly due to start on 29.9.
Felt briefly elated after the cystoscopy findings, but the CX result the following day transported me straight back into uncertainty. My husband is home again after his 3rd admission to hospital following heart surgery complications. He is feeling a little better and I am concentrating on cooking nutritious meals to feed him up, since he lost a lot of weight. For now the only result seems to be my growing waistline, whilst his weight stays the same....
Heat killed BCG scheduled for next Tuesday. Bloodtest shows great liver function, neutrophils however lower than in July??? not sure why....hope the cancer isn't back in kidney. This silly CMV virus has obscured the picture rather...not sure about next step. Dealing with bladder and reducing recurrence risk there seems to be priority right now. So that's the next 3 weeks dealt to.
Bummer. Went to get BCG heatkilled treatment last week and they could not make the autoclaving work and were unable to contact the manufacturer for details of how to. The instructions I had sent failed to include information about the type of container one can use to heat kill safely in the autoclave without the stuff exploding all over the oven.
So they decided to give me a 10 per cent dose to check whether I could tolerate that, but after catheterising me, there were Nitrites, blood and protein present and a UTI was suspected and subsequently detected. Since I have had chronic bladder burning since I first got the cancer, which is now 2 years ago, I could not tell that I had an infection. I started on Trimethoprim, BCG postponed 1 week. After 2 days I was told that the bug was resistent to Trimethoprim, in fact resistent to all oral antibiotics other than Nitrofurantoin. If that does not work one will have to resort to IV antibiotics, namely Cefuroxime or Gentamicin. Nasty type of e coli. So now I am on day 5 of Nitrofurantoin without any change in my symptoms, although my energy level has increased...off to Dr to get urine test to find out if Nitrites still present and depending on that, off to BCG this pm. It is all very absurd, as I feel fine other than the burning bladder, which I have got almost used to by now.
E coli resolved. 3 rounds of BCG. First two at 1/10th dose, bearable, last one yesterday was rather awful. Mega burning, urgency, frequency, took anti inflammatories and painkillers and ended up with terrible gut ache. Can't be further than a few metres from a toilet facility. Liver function slightly deteriorated as soon as I started treatment, up from perfect levels. Also experiencing night time insomnia, a side effect of BCG treatment, had forgotten about that one, but it is rather debilitating. My husband, in an overzealous state had gone to Fiji to work last week, not long after open heart surgery and ongoing post operative complications. He had a great few days, but caught a virus on the way and has spent all week coughing his lungs out. So back in hospital today after nearly passing out after a coughing fit. I have never had a period in my life so overshadowed by ill health. Not fun and may it pass soon for a while. There is a limit to how long one can keep up a state of manic defence.
Next stop Ureteroscopy under GA in December, Cystoscopy March, BCG April and then Inshallah my next Camino! Always need a goal and something to look forward to.
Ureteroscopy last Friday. Hard kidney stone removed in the process. Turns out it was a likely result of a Hair Skin and Nail supplement containing horsetail and Silica! Supplement binned accordingly.
Urologist said it would have been very nasty had it decided to go on the move. Better out than in then!
Found patch in bladder which again was either due to inflammation from BCG or Carcinoma in Situ. Since I had no symptoms other than a bit of burning I decided it was most likely inflammation.
Turned out I was right! Phew! But still awaiting results from Cytology wash.
The anaesthetic knocked me around once again and the day after I felt extremely depressed, my brain continues to be scrambled and I feel tired.
Saw a fantastic Medical Urologist on Monday to get a comprehensive perspective on my situation and walked away with a repertoire of new information and affirmations of what I was doing.
In a nutshell:
Meticulous follow up and adherence to treatment protocol essential.
People who end up with invasion and spread have left if too long to have their bladders out.
My urology surgeon is considered highly skilled, academic, thoughtful and measured and to trust his advice. He would not recommend bladder removal lightly, but when he does one must act.
Promising new treatments with Pembroliazub/ Keytruda, which makes cancer cells visible to immune system so it can attack and kill them. Possible further trials next year.
Turmeric and Cumin research evidence that they reduce cancer risk.
Green tea to reduce Cholesterol, stay away from Statins.
Low dose Metformin protective as reduces blood sugar and cancer feeds on sugar, but wait with this until body has recovered more from CMV virus.
Free counselling available through Cancer Society, great.
Well I decided to give the cancer scare a bit of competition and started a new project cooking my way through Rick Stein's book " Venice to Istanbul". My next walking pilgrimage is planned and largely sorted, so I had some space to fill.
I have started a blog thread on the topic.
My husband is doing really well after his heart operation and the pacemaker is doing it's job. Apparently only occasionally needs to help out a bit, so battery slow to be used up.
Here is to a better xmas than last year!
Xmas is behind us and so is the waiting for results. The bladder biopsy showed inflammation only and the Cytology Washings showed atypical cells, so has to be redone in a couple of months. These don't point to cancer and may be due to instrumental interference in the urinary tract...hopefully. Bladder and urethra burn still and there is protein trace and moderate blood in urine....irritating, as I never seem to really be able to forget about the whole business.
Saw my urologist a few days ago. Atypical cells from the R kidney washings. No symptoms and no blood in urine. Nonetheless concerning ? kidney cancer or instrumentation. He suggested a CX bladder test to see if the value has deteriorated further from the last one a few months ago...grrr, this is sooo chronically worrying. Anyway in the meantime I am cooking my way through Rick Stein's Vencie to Istanbul cookbook. Up to recipe 42. Having great fun with this and family and friends are enjoying the extra meals provided. Busy planning for my next walk in May/June through Portugal and Spain.
In March another cystoscopy and further BCG x 3 in April at a 1/3 vial dose if I can tolerate it.
Well, since the atypical cytology result, I have received the results from the CX bladder test, which scores biomarkers. The score was 4.8 which warrants further investigation too! So I just sent an MSU off on the advice of my specialist who is away on holiday for 2 weeks. This came back with a trace of blood...so who knows what this all means. I have burning symptoms..no infection, the leucocytes seem to have faded, so hard to say. It is all chronically disconcerting and hard to switch off from. I will contact my specialist after his return from leave and we will see what to do next....
On last inspection in December, he did not actually see anything of concern other than a patch in the bladder, which was inflammatory once again.
Sent second CX bladder test to lab on the advice of my surgeon. He had a free test to give me. Wait and see if it is in line with the last one. If it is, then the worry is that I may have a recurrence in the kidney, which is not good. Likely kidney and ureter removal, dodgy bladder and one kidney and ureter left...Feels totally surreal as I feel fine. No symptoms whatsoever other than a little burning, which is likely to be BCG related.
Just got employee of the month award for my efforts applying Japanese Art of Tidying to the work environment. Having our granddaughter for the weekend and being superbusy cooking my way through Rick Stein's Venice to Istanbul book. 56 recipes done! About 80 left to go.
Decided to go to Europe twice this year. Once in May to walk the Portuguese Route to Santiago and out to the coast with my trusted friend Anna and then again in August to walk the Geneva to Le Puy route once again to accompany my friend Traudl who has been struck by breast cancer.
My husband Johnny is doing well with his recovery from heart surgery, but a little more tired overall and does not manage hills yet when we go walking.
CX bladder result finally. It is 4.4, which is slightly better than the 4.8, but still dodgy. so proceeding with cystoscopy on 7.3. as planned.
Cystoscopy clear. Nice one. Specialist still concerned about R kidney, so in July another ureteroscopy.
On it goes. I feel permanently oppressed by the threat of this diagnosis. High Grade Transitional Cell Carcinoma of the Urinary Tract, so this is far from being confined to the bladder!
3 BCG treatments behind me. One month later the bladder still burns and having midnight insomnia and day time drowsiness. Exhausting. Doing a 6 week gym stint, which is helping my energy levels.
Off to Portugal and Spain in just over a week. Great to take my mind off this stuff.
Back from my walk in Portugal and Spain which was wonderful. Now the great news. Cystoscopy and flexible ureteroscopy under GA yesterday. Specialist said no cancer evident and my R kidney looks excellent. It used to look a bit inflamed. Just have to wait for the results from the washings. Anaesthetic much better, had different anaesthetist who used a lighter concoction. So now I have 6 months before I need another cystoscopy and my next BCG treatment will be scheduled for October.
Back from my walk in France which was a very rich experience, not to mention the fact that I just found out after an ultrasound that I had indeed broken my foot on day one of the walk as a result of ill fitting orthotics. Saw a Dr in France who decided it wasn't broken, so I grit my teeth and completed the 350 km trail. On return home the pain and inability to weightbear on tiptoes persisted, so I got it checked out some more after initial x rays were inconclusive.
Not sure now what next. May need MRI scan, as I may have ended up with pseudoarthrosis, which would require surgical fixation of the bone.
In the middle of this another round of BCG. Today was the second treatment. I am having a 1/10th dose, which I am tolerating really well. Main side effect is the midnight insomnia which deprives me of hours of sleep. Not pleasant as I am really tired during the day, when I have to work.
2 weeks post BCG and I feel tired, chills, R kidney ache and burning in urethra. Went to GP as worried I may have a recurrence in the kidney. Dipstick showed Nitrites, pointing to E Coli infection. Started Nitrofurantoin antibiotic as the last E coli infection was sensitive to this.
However after 2.5 days no improvement and urine culture did not grow anything.
Very weird. They are re incubating the sample tomorrow.
Had a day off sick as not well enough to go to work.
Nothing on the recultured urine test, so stopped antibiotics, but the pain in R kidney continues and I went to GP for a review today. Given my history he says it needs to be investigated further. He called my urologist, who suggests another urine test, so this has gone off to the lab.
There are no nitrites, protein showing, just trace of blood and leucocytes which is to be expected after BCG.
I am quite worried about this, as it is likely I have a kidney inflammation, possibly due to BCG or cancer recurrence. Neither options are desirable.
Well eventually the kidney pain went. I am pretty sure it was the result of some BCG back flow up into the ureters, which caused irritation. For some reason on the last BCG day the bladder filled up more quickly than usual and I had trouble holding on for the full 2.5 hours after installation.
So this week I had another check up and whew the Cystoscopy was clear. CX bladder test scheduled in a couple of weeks and next BCG round end of March.
Out of the blue, I developed gritty pain in R kidney and bladder, ureter on R feels a bit sore and there are leucocytes and blood present on the urine dipstick. I also have night time frequency, which is really annoying, getting up 4 to 6 times per night.
Had a urine culture, which was negative.
Wondering if this is a BCG surge, 5 months post last round or whether I have a recurrence. It is so confusing to get a handle on this. Have contacted my specialist, but have not heard back.