After an eventful night on our ward, I won’t go into details for the sake of privacy but will say all the staff on SSS last night were amazing and so patient. Sadly the noise added to the existing discomfort of catheters, cannulas, central lines, oxygen tubes and DVT bags that inflated on my calves every minute.
So no sleep then.
Eventually they started to disconnect various devices and I could then see why I felt so battered and bruised.
I only felt pain when I sat up. This makes going from lying to seated quite uncomfortable.
Katie took a photo when I got home, of the main wounds that are stitched internally and glued externally. Warning : a little gruesome. But I understand why I’m sore.
Main woundKeyhole wounds.
Considering the major surgery I’ve had this is amazing. Hopefully I’ll keep the pain managed over the coming days.
The last few posts on this blog don’t make for pretty reading and a few times I’ve been tempted to take some down. But living with cancer isn’t pretty or easy and there are downs as well as ups. I think it’s important to show everything.
The good news is that I feel a bit better. I’ve got some additional anti depressants that seem to be helping, they also help with sleep but make me really tired. My Dr says my body should get used to them within a few weeks.
I’ve also arranged to start some counselling at the Phyllis Tuckwell Hospice and start later this week.
I’m still struggling a bit with life in general and without any warning something will trigger a full meltdown where I just want to feel normal again without any of the tiredness, or aches or breathlessness or upset stomach or any number of minor ailments bought about by treatment.
Probably the biggest decision I’ve made is to take a treatment break at the end of the month. Today, September 6th is one year since I was first diagnosed. And in that year I’ve had 13 treatments and God knows how many blood tests, pills, phone calls, injections, cannulas, scans.
Exhausting is an understatement and I’ve been told it’s ok to take a break from treatment for a maximum of a couple months.
Takes some time, recover and recharge and start again.
Next week I start a two week holiday from work. Sounds a bit odd after all the time I’ve been off work sick but during all of that time I never had a break or went away.
We’re going to Dartmouth in Devon for a few days for some RnR and then will have a staycation for the second week. Try as much as possible to enjoy ourselves and forget about cancer.
A strange thing happened this week. Not only have I slept almost continually since my treatment on Thursday, my worst response to the treatment since the start but I have had a dog worming treatment recommended to me as a cancer treatment. From three different, well respected sources.
Of course I immediately dismissed it as rubbish after the first one but after the second third came in a couple of days apart, from completely difference and unrelated sources, I decided to do some reading. These are not stupid people. I owe it to myself to do some research.
The treatment in question is Fenbendazole. Also known as Panacur, Panacur C and SafeGuard and is a well known and established worming treatment for all animals from cats to horses.
The key bit of information here is that it is a long out of patent drug. Meaning anyone can make it.
I tried to find out if it was really successful why aren’t drug companies falling over themselves to re-purpose it and run trials and tests. The answer is simple.
Money!
Money makes the world go round and it seems that big pharmaceutical companies won’t invest time and money in research into a drug that anyone can then make.
Ok so why won’t the big charities take up the research. Well thats harder to say but whats clear is that they will not touch this with a barge pole. I can make assumptions but I have no facts or evidence. My conclusions are that a lot of their financing comes from big pharma companies and again focusing on cheap drugs with no clear profit is not in their interest. This cannot be the case, surely?!
There is enough anecdotal evidence that some people have had some success taking FenBen (fenbendazole) daily and often they get results very quickly.
But I’m not interested in anecdotal evidence, I want facts, research and studies before I put something, not designed for humans, into my body. This is harder to come by. I ended up at a couple of studies.
I’ve read all three articles thoroughly and the conclusion of the last one, from Stanford University was positive
Conclusion: FBZ appears to be a potentially safe and effective antineoplastic agent that can be repurposed for human use in treating genitourinary malignancies. Further research is necessary to define the role of FBZ as a chemotherapeutic option.
“Further research is necessary” though.
By this time my cynicism has turned to genuine interest but those who know me know I’m not a risk taker.
During my many hours of research I came across a blog from one person, who clearly just wanted to share his experience and is not trying to make any money (unlike other links and blogs with their clickbait links to FebBen sources).
It’s an unconventional blog with all posts appearing on one page, I guess this makes it easier to just scroll through endlessly on a mobile device, which I did.
The more I read the more I became interested. His blog is full of his story as well as stories from others just following the treatment he outlined. Known as the Joe Tippens Protocal (JTP).
The daily protocol:
25mg broad spectrum CBD oil (little to no THC, so legal, and no highs)
222mg fenbendazole
600mg curcumin
From here I joined a private facebook group with dozens of posts a day of people enquiring, desperate for a cure, help and others with good news as well as others saying its had no effect at all.
The next big questions were “what’s the risk?” and “what about my immunotherapy?”
“Whats the risk?” – Apparently none, it is well tolerated in human consumption with only those with pre-existing liver conditions showing any issues. The sceptic in me again comes to the fore and asks “so why isn’t everyone taking this?”. I can’t answer that but its a glaring question. Why is this information not more widely known ?
“What about my immunotherapy?” – carry on. It doesn’t impact any pre-existing treatments. Again I find it staggering that something so low risk is not more widely used.
So I have nothing to lose right? Just do it, right?
Wrong.
I’m still on the fence. Joe is very honest that he did not tell his oncologist he was taking the FenBen as he was on a trial and didn’t want to be kicked off. Lots of people don’t tell their medical professionals. This makes me uncomfortable. I like to believe my team have had my best interests at heart and I don’t want to deceive them. Also if I go to them I with this, I’m pretty certain they’ll laught me out of the room and wash their hands of me.
I haven’t got a clue about where to obtain FenBen or “good” broad spectrum CBD Oil. I know nothing about curcumin or why it’s included. So I have more research to do.
I will say that I’ve been shown not to dismiss anything not recommended to me by a medical professional though. I naively thought if something was available then I’d get it from them but I’ve learnt how big pharma are only interested in money so therefore you only get recommended the current best, and usually most expensive drugs. This isn’t always bad but you need to do your own research.
I’ll say again, I’m not and have never been a risk taker. But this is the first time taking a risk could save my life.
For about 2 months now I have been slowly reducing my Oxycodone dosage. I was on 30mg slow release twice a day for pain relief but with my ongoing fatigue I wanted to do anything I could to try and reduce this.
I’ve been increasing general activity with walking, cycling and just keeping myself busy rather than allowing myself to constantly sleep. If I’m physically active I seem to be able to keep going a little longer but as soon as I stop and sit down then its like my body takes it as a sign to rest and wants to shutdown.
The main cause of fatigue is my Nivolumab monthly immunotherapy treatment but a lot is also coming from the opiates. I’ve not had any pain that I believe is associated to my Kidney cancer for a while now so it seemed logical to reduce the Oxycodone dosage and find out if I still needed it.
I hadn’t realised quite how dependent on it I had become. I’m not addicted to it and am not showing any signs of addiction but I have had some unpleasant withdrawal symptoms as I’ve slowly reduced the dosage.
I initially dropped from 30mg to 25mg twice a day for 2 weeks. That went fine so I then dropped from 25 to 20mg twice a day. It’s fair to say that was not so good. I guess because the actual percentage drop was bigger or perhaps my body actually noticed the drop.
I had a raging headache, felt spaced out and disconnected, I felt even more tired and also nauseous. After a couple of days I went back to 25mg to re-think the plan.
After another week I felt brave so I dropped my evening dose to 20mg but kept the morning dose at 25mg. This seemed to be more successful.
I did a bit of research and found a chart that said I should be able to drop 5mg per week from morning then evening doses. So about 12 weeks to come off it completely.
Long story short I’m now at 10mg in the evening and 15mg in the morning. This is about 8 weeks in to my tapering down process.
I knew it would be slow but I didn’t release how crappy it would make me feel. The worst bit is more joint and muscle aches that could be a withdrawal symptom or a side effect of the nivolumab. Also, reducing the opiate intake means another immunotherapy side effect is now unfortunately present, an upset stomach. Luckily I already have meds for this and was warned it was the most likely one to get right at the start of treatment but the large dose of opiates had countered that the opposite way.
I’ve now giving it at least a week in between dosage drops to allow myself to get used to each stage so expect this will take another 5-6 weeks+
I’m hoping to try again to get back to some work in a few weeks and this transition is a key part of that. The fatigue isn’t going anywhere all the time I’m on the Nivolumab but I should be able to reduce the impact and deal with it a little better.
The cancer journey is littered with things sent to challenge you and this is just another one of those things.
I’m sitting here with immunotherapy treatment number 10 slowly dripping into my veins. I’ll be here for an hour and do this every month.
Everything seems to be running on time today and I’m plumbed in within 10 minutes of arriving and my Nivolumab, which is only made up when I call them to confirm I’m coming for my appointment was here waiting for me.
It’s also nearly 9 months since my initial diagnosis and since then there have been a lot of ups and downs with recent months spent just “treading water”, managing fatigue as best I can and reducing oxycodone very slowly (to help alleviate some of the fatigue)
I’ve felt good for a few months now. Tired but getting on with life with few side effects. I’ve been working and generally been positive about the future and feeling “normal” again.
This started to take a downward turn about 10 days ago with the fatigue slowly becoming more evident. Like someone slowly turning Fatigue Volume up in a daily basis.
Today I’ve barely been out of bed. I had my blood test done this morning for treatment number 8 on Thursday but then spent most of the day sleeping.
I’ve been worried about this all over the weekend with times when I had no energy and just moving was a monumental effort.
The hospice nurse suggested speaking to my Oncology team and they believe this is just normal side effects and that it does come and go without rhyme or reason. They’ll get the results of my blood tests tomorrow.
I also spoke to my GP who already had the results of my bloods taken this morning and was able to confirm they were all normal so nothing else is going on.
He suggested I may have been a little hasty in my return to work and suggested a slower approach would have been better. I thought I had taken it slow but he mentioned taking months to get back to full time, not weeks.
He’s signed me off work for another week and told me to listen to my body. So that’s what I’ll do. I feel guilty just being so useless, so tired and a drain on everyone around me. I hate letting people down and that’s what I’m doing at work.
But I can’t fight it. I have to let my body recover and deal with the aggressive treatment I’m having. Trying to do too much too quickly is, as I’ve discovered, a recipe for disaster.
I’ve posed my concerns on an online forum of people on immunotherapy and my symptoms are typical. Joint aches are normal. They come and go and if they get too bad I can be put on steroids (more drugs). The oxycodone is also very potent and can cause issues on its own. The fatigue can go from non existent to full on bed-ridden overnight with no warning.
I guess I’m slightly relieved it’s nothing new and others are in the same boat with the same symptoms but I’m also a little despondent that I thought I’d got away with bad side effects and finding out they can come back at any time and be worse or better without warning is tough to take.
I can believe my month is up and my next treatment is here again next week.
The last few weeks have been really hard both physically and mentally and this has been obvious with some of my recent posts. Mostly this is down to everything aching and me generally feeling tired again. Continuous Aches and pains are really tiring and not great for my mental health.
I got a bit down at the end of last week when I found my fitness had taken another hit and I struggled to walk a mile. Another walk on Sunday in the snow nearly finished me. It was only a couple of miles. It was a little easier on Monday., the sunshine helped.
One thing I noticed is the the cold air burns my lungs. Apparently while the tumours may have shrunk/disappeared they will have left scar tissue and this will cause some of the aches and pains I still feel in my chest.
This week has been a bit odd with some positives. I’ve been sleeping really well for the first time in ages although I do think this is due to me taking a 10ml dose of liquid oxycodone about an hour before bed. Whether this makes me sleepy or just stops the aches in my legs and back from keeping me awake I don’t know. But I’ll take it. That’s the only time I take it.
I’ve had confirmation that the fluid in my lungs is not at a level that needs to be treated and will probably be absorbed naturally. I still have to think to breathe deeply. It’s not a natural action yet.
I was also given the ok to get my Covid vaccination and had the first part of the Astra Zeneca vaccine this morning. This was after my GP finally added me to the Clinically Extremely Vulnerable list earlier in the week.
Generally I feel a bit of a spare part at the moment. I’m not doing much, tired all the time and feel like I’m just getting in the way. I want to spend the next couple of week really trying to build up my activity levels. Not just going out for walks and exercise but using my brain, thinking about things and trying to get back to normal. Or at least the new normal.
I’ve been very aware of a slow increase in aches in my chest over the last couple of weeks and I’ve done the best I can to not assume the worst but it’s very hard not to.
The last couple days I’ve had an ache on my sides when I lie on either side. Nothing sharp or severe, just something that wasn’t there before. Today I have a slight sharper pain, like a soft pinch at the front lower part of my chest when breathing in deeply.
It’s uncomfortable enough that I’ve had to have a dose of liquid oxycodone for breakthrough pain.
I’m trying to tell myself it’s just my lungs not being used to being fully inflated but I know deep down it’s probably something I should get checked out.
But I’m scared to.
What if it’s the start of the next stage of my illness? But equally what if it’s something simple than can be easily treated? I don’t like hospitals and my last two a&e visits ended with being admitted and that’s the last thing I want.
I will, apprehensively reach out to the oncology team tomorrow but part of me just wants to ignore it in the hope it will go away. That’s Men for you I guess.
Surprisingly I do get periods where I forget I have cancer then I get annoying reminders like this. This is living with cancer, I’m still new to it but doing my best.
I’ve done pretty much nothing but sleep this weekend. Since my treatment on Thursday I’ve been completely wiped out with aches all over my body and a complete lack of energy
I’ve had to have breakthrough pain relief every day so far and Saturday I had 2 extra doses. This is just to deal with everything aching as I can’t take ibuprofen. When your whole body aches constantly it’s just completely draining.
It’s strange as I’ve been getting used to the treatment and each of the first 4 was slightly less problematic that the previous one however I’ve had a six week break and just had the single treatment and now it has completely floored me.
I can only hope that like previous doses, my body gets used to it and this becomes more tolerable as time goes on.
We’re hoping that this coming week gives us the good news we’re desperately looking for following my CT a scan that I’ll have on Wednesday. I want to hear the worlds “your tumours haven’t grown”.
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