Thank you for all the inbox love and checking in on me. I try to get the blogs out as much as possible. I’ve just been floored by the chemo and I haven’t been able to sit at my computer or even have the laptop on me on the couch.
Today marks Chemo +4 days and I am just… starting to feel normal again.
It has been a completely different experience of my previous cycles, I’ll go into it a bit.
First off and for me, the biggest impact has been my Central line port. You may know already, this was installed when I was under the NHS and I’ve had this since last year and I have had a complete round of treatment with this. So, why do I bring this up?
Well, I am completely healed from the installation operation now. It no longer hurts to use it. I am so used to using it now. It’s like it is part of me.
(For context, see image) The oblong connector you can see is punched through my chest wall into the connector and therefore directly into my blood system via the jugular.
If you can see under the tape (keeping the site clean and connected) there is a 4cm horizontal scar.
This whole site being healed up has made such a huge difference to being on chemotherapy. I feel no soreness/tenderness from it.
I barely feel the connector being punched through my chest skin. It’s not pain you feel per se, more a shock and a click noise and then it’s done. After disconnection I don’t feel any soreness. I have complete use of my extremities which is not always the same when using cannulas.
Next of all. This will probably be seen this as the biggest difference in my chemotherapy experiences.
I now receive my chemotherapy from home via my private healthcare.
A quick rundown on how it works would be:-
- Nurse arrives on Tuesday, flushes my port out and takes bloods for testing.
- Results arrive, my chemotherapy prescription is delivered to the door the following day.
- Nurse arrives following day and stays with me for about 6 hours.
3 of the 4 parts of the prescription are administered via IV Pump with relevant flushes during this time period.
- I am then connected to the pressure pump (see image above) and then the final 4 of 4 chemo drug is drip fed to me over the following 46 hours.
- Nurse arrives 2 days later and disconnect the pump and check in on me.
As you can imagine, this is leaps and bounds different to my original chemotherapy experience under the NHS. For a start, I don’t have to be on a hospital ward for a full 8 hours, especially in this current COVID-19 climate. This means that Kerry (my partner) and I can effectively be shielding at home as it removes a LOT of the risks for us.
I am so lucky to have the private care. Both Kerry and I have this via our employers, however Kerry’s far outperforms mine.
Due to this healthcare I have access to a drug called Avastin (Also known as bevacizumab) Originally available on the NHS, however funding for the drug was removed circa 2010 as it’s cost back then was £21,000 *(click the link to read more) They know it works. You just have to pay for it. Some insurance policies won’t cover it due to it’s cost.
Our insurance is amazing and I am so grateful to Aviva’s oncology team. They’re a great bunch of people who always speak to you like a human being. Every single time I have had to speak with them it’s been a painless experience.
Not everything is covered by our insurance. There are certain experimental treatments that aren’t on the policy. The treatment from the Care Oncology Clinic Ltd (London) for one.
In short, the trial provides me with 4 different pills as part of their medical trial. Metformin, Doxycycline, Mebendazole and Atorvastatin. All of these pills are available on the NHS via prescription for their intended uses. One used in diabetes, another is an antibiotic etc. These drugs help to complement the other treatment I am receiving and prevent the growth and spread of existing cancers.
However, I would not be using the drugs for what they were originally licenced for. Therefore, they must be prescribed to me privately and paid for with an online pharmacy.
I’ve blogged previously on the ups and downs with their costings, the impact of both Brexit and COVID-19 made them an utter rollercoaster of fees. Thankfully stable at the moment. I soldier on taking my pills every day.
However, what… what if I couldn’t afford these? Why shouldn’t I have these pills (available on a NHS prescription) provided to me. Why should my survival rates be any different because I am paying for it?
It really does get me down when I think about it. It makes me realise how privileged I actually am.
I read about so many other bloggers in similar situations to me. Some of them sadly losing their fights or finding new metastatic sites, would their stories be any different if they were on the same treatment as me?
I guess I will never know. I do think about it though.
I think that having the treatment from home comes with so many extra benefits too. I have a tendency to overheat during chemotherapy. Being a hot sweaty mess in the privacy of your own home is a lot easier to deal with. Not having to travel feeling queezy is another. Not having to try to be social with other people when all you want to do is curl up in a ball and ‘deal with it’ is top of my pile.
It’s not how I remember it.
Yes, I understand that the chemotherapy I will remember the most will be the sessions towards the end of treatment. I have the blog posts to read through to remind me. However, this is very different to all of what I remembered from last time.
I remembered being sick from the second prescription 2 or 3 of 4 was pumped into me in hospital.
I remembered losing my sense of taste and smell near enough instantly.
Overheating, nausea, extreme vomiting from the offset and crippling diarrhea. Then the long term issues. Aches and pains, mouth sores, lack of drive.
However, none of that happened this time. This has been more…. gradual?
For the last 5 days, I haven’t really eaten anything other than toast. I’m not say that I have an appetite this time. No, far from it. I still feel that food is the devil and it’s trying to make me throw up.
Kerry still has to take any strong smelling food away from me when she’s eating. Just to give context. I find anything to be strong smelling on chemo.
The smell of food, the idea of food can turn my stomach in an instant.
However, I have been able to keep it together mostly. Vomiting hasn’t been as bad. I’ve had a couple of bad bouts but for the most part. I’ve kept it together. Without wishing to go into it too much, same can be said for diarrhea. Hasn’t been too much of an issue.
I’ve just felt… Uuuuch! Absolutely zero motivation what-so-ever. I’ve tried reading, I’ve tried watching TV or a few movies. I just can’t be arsed.
I find myself trying to nap constantly.
But, if you nap in the day, you won’t be able to sleep through the night.
I’ve slept so much and you know? I’m good for it thanks. Sadly, I don’t sleep all the way through the night but I start watching a film. Doze off again.
What has been pissing me off is heartburn. Nothing I use seems to make a single bit of difference. I’ve used all of my usual pills and techniques. All of which have failed. This means that my tea and coffee intake has plummeted too. Not sure that’s a bad thing though.
However, the good news is that I am starting to feel much MUCH better. I had a cuppa today too 🙂
I did on Sunday (Chemo +2 days) stupidly think I was going to be well enough for a treat.
Kerry and I drove (with full PPE) to South Shields to our Fish and Chip haunt, ‘Colemans’ I did manage a lot. However about 60% through, the oil took over and it turned my stomach. I couldn’t finish it all, not even remotely.
I’ll know for next week.
I’ll leave it there for today.