Once again a massive thank you to everyone for the messages, emails, texts and even phone calls of support. I know I haven’t been around much on social media. I am sorry that I don’t always reply right away but I am trying.
I am 2 weeks late on doing a blog update, and whilst I do try to do one every two weeks, sometimes I just don’t have the energy or the will to sit in front of the laptop/computer and blog.
When I blog, I try to put my heart and soul into every. single. one.
It’s just that the chemotherapy really took it out of me. I haven’t really had the strength. It’s all cumulative, you sort of reach your limit you know?
It’s like my ‘Get up and Go’ got up and left as cliché as it sounds, it’s true.
Just to warn you. This is 4 weeks worth of an update, I will try and cut it down a bit but it’ll be longer than usual.
The 6th session and last round of chemotherapy was a disaster from start to finish. On the Monday of 7th September, I had to have bloods taken to see if I was well enough to have chemotherapy. The nurse that arrived was one of the trainees that had previously had issues connecting with my port. I was a bit worried and then it happened.
She was quite ‘heavy handed’ shall we say? She puts the huber needle in, ‘quite firmly’, it makes the usual crunch noise but will it give any blood? No… would it Shite.
At this point I can see her worst fears are happening. She gets on the phone to her trainer and talks it through, she says that she can have another attempt but if that also fails it’s going to be a cannula in my hand or arm to obtain the blood for the test.
You can already see where this is going right?
Yep. The second attempt is just a bad as the first. It looks like it’s connected properly but nope. It just won’t give blood. So with my anxiety through the roof, and I bloody well looked too. She gets a needle out to go into my hand. I HATE NEEDLES!!!!
Fast forward a couple of days, I get my chemo prescription delivered, and my usual nurse Fiona arrives with another trainee in tow.
Guess who’s doing my port? Yep. The trainee. In fairness. I could have but chose not to say anything.
I take my t-shirt off they both can see the bruising on my chest and tell me that it’s going to hurt no matter what. Greeeeeeat!
As soon as the needle goes in Fiona asks her if she’s sure she’s used the correct needle as it’s too proud of my skin to be in correctly.
Yep, she used the wrong needle…
So yet again, I get cleaned up. This time the correct needle is used and it just won’t give blood.
At this point Fiona takes over and gives it a flush or two and it is both giving and taking blood now.
It just my luck. I tell everyone I am needle-phobic… well because I am.
I wasn’t always like this however, I get sweats thinking about them now.
I am just really unlucky.
Even when it comes to cannulas I end up with haematomas as nurses and doctors go through my vein and out the other side. I bruise like a mofo when it comes to cannulas. These are from Wednesday last week and Monday this week:-
The most success I have is when they use the smaller cannulas for kids and people with thin skin. I have been quite unlucky with cannulas, I’ve had them hit a nerve, I’ve had them snap. Even when I get the ‘Professional’ or the nurse that’s been giving them for 30 years, they go wrong.
So after, the chemo was completed on the Wednesday the 9th, the nurse arrives and disconnects my port.
We start making arrangements for 6 weeks time to have a port flush out and I say my heartfelt thank yous to the Lloyds nurses. They’ve helped get through this chemo and not only that, but during lockdown too.
I’m asked if I am okay, but I kinda fib and say yeah, but I’m truly not. I’m grey skinned. I’m exhausted. I am in so much pain in my rear end due to open cuts that just keep splitting open. I am told to watch out for the amount of blood because I could end up becoming anemic due to the loss.
I am at my most vulnerable during this time more than ever.
Now that chemotherapy is over. Give it two weeks and then the only way is up. It’s more than likely going to be a couple of weeks of hell.
And it was/is. I was so weak. I couldn’t get up from the couch unassisted. I was bleeding from everywhere, the back end obviously, but my nose would bleed spontaneously. I would brush my teeth and it would like like something out of a SAW movie. I had complained to Kerry that my earring/flesh tunnel was sore. We took it out and I had a huge blood blister there that unfortunately ruptured and was pouring with blood.
I have been pretty much living on the couch. My sleep schedule is completely shot. I live off bland toast, mostly skipping lunch but making sure I am getting eating around pills time. 10 am and 10 pm, so I will have eaten by the time the pills in the evening I should have had something substantial to eat.
Painwise, it’s been at an all time high. I found that I was using paracetamol, tramadol and Oramorph morphine. I wish I could sleep more than anything but the whole worrying about the results outcome has been keeping me up mostly.
I get a phone call from Dr Pedley the following day. He says that he is arranging an MRI scan and a CT scan for me. I wait for the phone calls but they happen within 24 hours arranging the dates of Wednesday 16th and Monday 20th September for the MRI and CT Scans both at 08:30 in the morning.
For the most part, they both go off without a hitch. I had chosen the super early appointments so as to not interfere with Kerry’s work. The traffic really wasn’t a bother, it’s really just onto Durham Road, over the flyover, cross the Tyne Bridge, take the Jesmond turn off and then turn left onto Osbourne Road. At 08:00 the car park at the Nuffield Hospital isn’t full.
Their COVID-19 measures are that only the patient may go into the hospital. If I am honest. That is probably better for Kerry. The car seat would be a lot more comfortable, she can play her music loud and let’s face it. You always get a shitty 4G signal in a hospital. I am always grateful that she can take me to appointments, if the roles were reversed, I would do the same for her.
I notice that the Nuffield are no longer taking temperatures of patients when they come into reception. I am not sure why this has stopped. Perhaps it’s lack of guidance from our utterly shambollic government. I also notice that you don’t seem to share the waiting room with anyone.
Other than a cannula and bruising, I have both of my scans and Monday Evening, I get a call from Dr Pedley:-
Monday 19/09/2020 Dr Pedley calls to say, he has the results from the first scan, the MRI.
It’s good news, I do not have any signs of any new cancers anywhere in my bowel, liver, kidneys, pancreas, seminal vesicle. What is coming up on the scans is scar tissue from where the previous cancers were.
He doesn’t have the CT scan results yet. I had to remind him that I had only just had the scan that morning. He then explains that the earliest the radiologist can look at the scans is the following day. Would it be okay to call me in the evening. We discuss the results and potential next steps.
So all in all, it’s the same results from my June scans on the MRI. It’s great news. It means that I really did respond well do the radiotherapy and stuff is staying being destroyed.
Yesterday Evening, 22/09/2020 I get the phone call from Dr Pedley and again, it’s good news
To remind you. The state of my lungs were that I had a total of 5 lung mets:-
- In the right upper lobe there is a 1.3 cm metastasis
- In the right upper lobe there is a 6 mm metastasis
- Also in the right upper lobe there is a 7 mm metastasis
- In the left lower lobe there is a 1.4 cm metastasis
- There is a new 4 mm metastasis seen in the left lower lobe
Of the 5 lung mets I had, 3 were classed as big, 13mm, 7mm and 6mm
2 were tiny. 4mm and 1.4mm
The radiographers report is that I now only have one that is visible and that it has signs of centralised necrosis.
The only way that he could even locate the other mets was by overlaying the previous scans and then zooming right in.
So again, this is great news. It means that we can now start planning the next steps.
Firstly, Dr Pedley would like for me to have a P.E.T Scan, he would like for my case to be brought up in the MDT at the freeman, this would be to see if the surgery teams, and radiotherapy teams think that I would benefit from other treatments. Namely:-
Surgery – Would I benefit from surgery in my back end to remove the scar tissues and improve my quality of life.
SABR – Would my case qualify for SABR surgery
What is a P.E.T Scan?
A pet scan or Positron emission tomography scan is usually combined with a CT scan. I am injected with a radioactive isotope called fluorodeoxyglucose which from the name is basically a sugar. This sugar is then absorbed by cancerous cells and not by other healthy cells.. I am then CT scanned. What we should see is any residual cancer cells should light up on the CT Scan like a christmas tree.
We will be able to see if there are any cancers left over in my bowel and which ones are still living in my lungs and we can go after them.
What is SABR?
Stereotactic ablative radiotherapy or SABR is a super fine form of Radiotherapy where you can bombard a cancer over the course of a few weeks with a concentrated beam of radiation to essentially ZAP the met or mets from my lungs.
To have SABR, in my previous meetings with Dr Pedley, there was a caveat of me having fewer and smaller lung mets. Which we now know that I have. So hopefully the MDT agrees that I should go for that.
Surgery for my back end.
Well, that’s about my quality of life. All of this chemotherapy has me at the weakest I have ever been. As I sit here right now on the couch. I am in great pain just from sitting. I am exhausted as I have been awake for about 5 hours now. I’m just shattered.
So, do we wait a few months until this chemotherapy stops working. We then do some sort of exploratory surgery. Take some biopsies of the scar tissue. Perhaps remove a lot of it and sew up the gap.
These aren’t things that my oncologist can answer. I will have to be referred to surgery for this. Perhaps I would have it done at the Christie. I don’t know if that’s something that Omar Aziz would do.
So there ya go.
Some good news in 2020? Surely not. I know, it’s been a lot for me to take in. I am just going to post this blog now and error check it tomorrow. I’m tired and I need to rest.
I’m in a lot of pain right now, I am still pretty much hiding from social media. It’s been a lot to take in. I still had to do that thing where Kerry turns to me and says “It’s good news Cam” I am happy. I want to be happier and I will when it all sinks in I guess.
Lets see what this PET Scan tells us shall we?
Anyways, thanks for reading, please share the blog if you can and any questions you have, stick them in the facebook post or send me a message on Facebook, WhatsApp or Signal.