I have just put the phone down to my oncologist Dr (Ian) Pedley, and I wasn’t expecting his call which threw me a little but he was just calling to find out how I have been doing on the new treatment and chew the fat a bit.
One thing I am going to say from the start here is something I feel I don’t mention enough. It is a COMPLETELY different kettle of fish dealing with cancer when you actually get on with your oncologist. I know it will sound daft or like almost like a duuuur moment but it really does make a difference.
Ian has only ever been lovely with myself and Kerry. He’s approachable, when he says “text me if anything comes up” I actually have no qualms about doing that. Whereas other doctors I would never have dreamed of not going through their secretaries or ‘proper channels’ for that matter. I don’t have that feeling with Ian. He gives me the feeling he’s vested in my treatment as much as I and that again speaks volumes for who he is as not only a doctor, but as a person too. This is a completely different experience from my original oncology team.
Well, the main thing to be updating you all on today is that I have been suffering heavily from the side effects on this chemo. Ian wanted to talk through them all and though I won’t go into too much detail but I have been firstly suffering quite badly from pain in my bowel, either the old cancer site or where I had that fistula.
Thankfully, whatever bleeding I had been suffering from at the end of treatment #1 has tailed off but the pain has remained. The pain has stayed at a near constant 4-6/10 and is worsened by any use of the bowel but also by sitting in anything that’s not been super soft like the couch.
The doctor that operated on me Dr Hainsworth told me it’d be months and months on and I would still feel the issues of this so it’s not like some revelation to me or anything, but Dr Pedley says, sadly. He’s not sure what can be done for that and I will continue to manage my pain with tramadol, however, I still am on a relatively low dose, so I may consider going from 2 x a day to 3 x a day. It’s part of my prescription to have them up to 4 x a day and I had originally been weaning myself off them as I wasn’t feeling any pain at all. I have the ability to do this so I am going to see how I feel by the end of this week and when I put my pill box together for next week, I may just do that. I will continue to monitor the issue and I will come back to him if things worsen etc.
We continued to discuss through the side effects, lethargy, headaches, nose bleeds, running nose, general aches and pains in just sitting still. I even discussed that Kerry had to help me get up off the couch once this week already because I just didn’t have the energy to do it by myself. Then on to the main issues.
The biggest part of the issues I am experiencing is the neuropathy, it is just something I can’t describe well enough to you. I can’t convey across what it’s like. I told Kerry it’s hell on earth but it doesn’t describe what it’s like. Everyone gets it differently. Some it’s an intolerance to cold. Some it’s torture. I experience it at different levels depending on where in my chemo cycle I am.
Days 1-8 from infusion it’s at it’s worst. Days 9-14 it’s better but not gone.
My main issues come from every cough, sneeze or yawn has the potential to give me a searing pain behind my eye on the right. Like blinding pain that lasts for 10 seconds to a minute. I clasp my hands over my face and prepare to ride the wave of pain which I can’t tell how bad it’s going to be. Could be 2/10 pain, but then it could be 10/10 pain with me screaming in pain.
This part seems to be part of my sinuses I guess, it’s like they’re electrified for a minute. Then, as quickly as the pain comes on… its gone.
I drank a cold drink and got the same feeling but this time it was down my nose and throat but this pain didn’t leave me for a long while. That was 15 minutes of pure discomfort I couldn’t deal with and sadly drew tears.
Whiiiiiiiiiiiiiiiich burn like electrically charged razor blades, I sat with a cup of tea afterwards, hunched over in the living room on the couch with Rupert by my feet and bless him, he knows something is wrong but he can’t do anything about it so he just stays by daddy’s feet.
I really don’t deserve such a loving dog as Rupert. He’s a special one that is for sure.
So all in all, the neuropathy is the hardest to deal with, from dropping things like hot cakes because I dared to touch something cold in the fridge, to not being able to eat the food because it’s too hot or too cold, which leads me on to one of the most awful side effects you can get, ‘First bite syndrome’ which again is another neuropathy issue. The first sip or bite of food or drink can come with a lightning bolt to your TMJ in your jaw. Doesn’t last long but doesn’t really enspire you to want to eat when you know it’s coming, so aye… I doubt you’d be surprised to hear that I’ve completely lost my appetite.
but… I eat when I can eat. I don’t eat when I don’t want to. I have crafty ways of getting hundreds of calories in small amounts of actual food. However, as you’ve probably guessed. My life has devolved to toast again. I made some chicken noodle soup but I can only really eat it when it’s luke warm. Wasn’t the greatest experience, but I can eat it.
I have ways of dealing with this, I wear gloves. If I go out, I wear a scarf, a snood a hat and gloves. I don’t drink cold drinks, I drink warm drinks. I drink hot tea and coffee and it seems to be okay. However, I don’t eat anything cold. It’d be like asking for issues. I wear slippers now… Funny that, only took me 40 years to start wearing them. Bought me some right bobby dazzlers off of Amazon. So I don’t stand on the cold tile floor in the kitchen/bathroom or laminate flooring in the bedroom, living room or study.
Each bite of food I prepare for the worst and prepare. These are the things I can do to try and combat the issues, but that’s all I can do.
After discussing this with Kerry and Dr Pedley. He’s decided to tweak my chemo. He said he is going to be reduce it in strength by about 20%
This won’t affect the number of treatments, the plan still being 4 more treatments before rescan, (discussed today) then CT, MRI and PET scan and see if the Royal Marsden will accept me or if another further 6 treatments will be required. Aviva (My insurance company) have already greenlit that.
I asked Ian outright that was he sure this was the correct thing to do? Like, would reducing the strength of the chemotherapy actually reduce its effectiveness?
What he he then said brought a smile to my face.
He said that if he knew anything about me, it’s my ability to downplay what I am actually going through, that what I am experiencing will be at my maximum and it’ll be the worst it could possibly be before I would say something and therefore he knew he was making the correct decision to turn it down. I am no martyr. I don’t want to be on chemo but I also don’t want to be the idiot that said he couldn’t do it when he knows he could and then lose this fight.
So how do I feel now knowing that it’s going to be reduced? Relieved for sure. I think I needed to hear this more than anyone. I was really starting to feel like I couldn’t carry on. I feel relief and ‘thank the gods’ that Ian called me today.
This isn’t the first time that my chemo has had to be reduced. My second time on 5FU with Avastin had to be reduced too. That was treatment 3/6 if I remember correctly. My neutrophils were too low and they gave me a week off and reduced my treatment. This… This is different though.
The only thing I hadn’t raised with Dr Pedley and I am cursing myself for not discussing is that my port actually hurts around my jugular vein. It’s one of the rare side effects but he’s only a text message away. I think I am going to mention it to him. However, he did also say that he wants to follow up with me in 2 weeks after my next treatment so if I don’t get round to it. I’ll do it then.
but there… it’s gone 20:00 and I am shattered. I think I’ll go and nuke a bowl of that soup I made and see if I can eat it.
Thanks for reading and listening