I have been on holidays and enjoying the Christmas period so wasn’t in the mood to write anything. Quite a difference compared to a year ago. Due to lack of movement with my GP and being refused a CT scan in A&E in early Dec 2023 (another GP of the same clinic sent me there requesting CT but the consultants just ordered more blood and urine tests to discard infection… despite 5 months of fevers and no evidence of infection in multiple tests), I went home (EU) for Christmas and decided to pay for a CT scan privately. This was just 300 euro and I got the results a couple of days before the New Year -> a bunch of lymph nodes in my groin area that were enlarged and needed urgent additional testing.
A lot happened since then and going home for Christmas again made me realise how big and deep and intense the journey has been.
Back to the original timeline, I described the first three days of chemo on my last post, so I would like to carry on and describe the following days. Taking a couple of flights last week made me remember how the chemo days felt -> the headache that you get in the airplane after a few hours when you can’t sleep and you are not properly hydrated. I think this might be the best definition I can come up with if someone asks me how I felt during some chemo days. A headache that doesn’t go away very easily.
Anyway, day 4 is great because you are just at home and don’t need to go to hospital for another four days. I started to get hungry again and I started to go to the toilet for number twos, after 3 days of not going at all. Before this I was getting worried that something might be wrong as you are basically not having any bowel movements for the longest time (and prior to treatment I would easily go twice a day). I don’t think I took any antiemetics on day four. What I had to do was to get the filgrastim injection, if I am not mistaken I started this 24 hours after the treatment the day before. Now this sounds like a joke but I did not enjoy having the first few injections. The needle is pretty thin and it doesn’t hurt but still you need to get 1.5-2cm of needle into the belly. The nurse explains you how you have to do it and gives you the injections to take home, which have to be kept in the fridge (but you should take it out of the fridge 30 mins before injection, apparently getting the cold solution is not ideal for pain etc). One thing that was super funny was when the nurse told me to lift my shirt to check if I had belly or not – he said oh you will be fine (lol), as some people are so thin that they might not have enough ‘belly’ to get the injection in a 90 degree angle with the skin, and might need to get the angle at 30 degree or so.
So I told my girlfriend to do it and after that I just said to her nah you are never going to do this again – it didn’t hurt but the feeling of someone else doing this was just scary, you have no control. I just did it myself from then on. Didn’t feel much with the injection, just some stings for half an hour and not much else.
What else those days? Headache, eating loads as the steroids start working, drinking loads, remembering to take all the pills… One thing I was a bit obsessed with was passing urine. I would drink like a litre of water after waking up and I wouldn’t go to the toiled for 3-4 hours, so I would be panicking like oh my kidneys are really struggling. Then I would urinate and it would be super cloudy, so I would get paranoid about having an infection! Then after midday I would keep drinking (3-4 litre per day) and would just go to the toiled every couple of hours as normal. But this thing of urinating very cloudy was a bit scary – then you think how much is going on in your body and it makes sense. This chemo is killing cells left right and centre, so the dead cells have to leave the body somewhere right?
The Saturday (so kind of day 6) I got some back pain which I then learnt it would be from the filgrastim injections as your bone marrow is super stimulated. It wasn’t very bad but in the evening I would just lie in bed instead of sitting in the sofa as I felt this way the pain was very mild.
These days I would just go to the local supermarket (about 5 min walk) and come back once a day, but not much else. I drove my parents to a big supermarket on the weekend so they would buy some stuff, but I wasn’t really active enough to carry bags or doing much (I kind of enjoy supermarket shopping btw so it is a place where I normally would like to check every aisle…). Max I was doing 2000 steps, and I was getting a bit out of breath and feeling tired legs after doing more than 5 min walk. This was hard to take as I had somehow expected to be able to do some sport during treatment and this was proving to be impossible, so I was a bit sad about it.
Weekend went past and on Monday I went to take bloods and do the ‘maintenance of my PICC line’, to then start the chemo on the Tuesday again. It was just draining to go to hospital knowing that the day after you would be struggling again. Luckily for future tests and PICC cleaning they arranged another place where I could go (district nurses), which meant getting another view and environment outside of the chemo ward.
Day 8 was the day to do the B and the O of the treatment – bleomycin and vincristine. Panic started again because these were another two new drugs and I was just worried for allergic reactions or having palpitations again. Also because I had read so much about this I knew bleomycin could cause shortness of breath (mostly for smokers I think, but I decided to ignore the fact that I had never smoked), I was also worried about it. And vincristine can cause extravasation, which means the drug can just permeate the blood vessels and ‘leak’ through the tissue instead. But with a PICC line the drug goes directly into a big vein/artery (whichever it is) so the risk is super low. Still, why not worry when you can!!
Before starting, the nurse told me my white cell count was zero so I had to be careful with any sign of infection cause basically I had no defenses. This worried me a little because I had taken the injections to stimulate the bone marrow and yet I didn’t have cells? Did I just start thinking that maybe there was something wrong with my bone marrow? Of course! (but there wasn’t)
Both infusions were fine and I didn’t fell like the other days. I said oh easy peasy then! I was thinking wow I can even work tomorrow (I will talk about the work another time and why I did or didn’t work). So this day was okay, I walked home which was about 10 minutes and I felt fine. Apart from the heart rate going to 120-130 when it would normally be 80-90, it was okay.
The day after was also fine and so was everything until the Friday/Saturday, which is basically day 12-13. At night I felt a bit breathless and I had to deep breath a lot. My smart watch was giving around 80 bpm which is a lot for night time in bed, and the oxygen saturation was about 95% (lesson that I learned after -> take the smart watch out during treatment!). I stood up and felt a bit dizzy like when your blood pressure is low. I also felt some back pain again as I had been taking the injections those days… So I wasn’t that worried as the breathlessness and pain were common side effects. However, I took the oximeter and it was giving 93-94 % saturation and that had me a bit more concerned. The night was not great as I couldn’t sleep, and the next day was a bit of the same, I was knackered and couldn’t even walk around the house as I was super weak. All I thought about was I would need to go to hospital to get a blood transfusion, as the red blood cells were probably super low… but you just have to give your body some time. By Sunday afternoon I was feeling better and had much more energy.
This was a common theme during treatment, 11-12 days after chemo start I would spend day and a half or two super weak, then your body makes more white and red cells and you suddenly feel super energetic again – you then learn that this is why some athletes doped with EPO…
From day 15 you just carry on taking the antifungal, viral, bacterial, but you don’t take steroids. So it is a weird feeling, your body is recovering but at the same time you don’t have the kick / boost of the steroids, so you somehow feel more tired. Weird.
Another PICC service, as you have to get it cleaned once a week. I had the same nurse throughout the treatment for this, as they were basically allocated to this department where they would do the PICC lines and other catheters. It was a bit mad as for the first time I was being treated by someone who was my age, and it just felt weird telling them I had cancer. Somehow it felt more normal with ‘older’ people.
I worked during my week off and that kept my mind busy and away from the worry monsters. I did had palpitations a couple of days but I think I was just so much on edge with stress and worries that I assume it was normal.
By the end of the rest week I was feeling amazing and had the energy to go out for little walks and go shopping etc which meant I ended up doing about 10k steps each day of the weekend. Then on Sunday evening the wrecking ball hits you again… Tomorrow you start again! This is very tough, having to mentally prepare to go through the same sh*t again. For me the concept of the cycle of getting better to then knowing that you would be so bad 24 hours later was extremely difficult to digest. Especially at that point when you don’t know if it is working or not.
But well, it is what it is. Some people take it as a fight, another round, others take it as just something you have to do and get on with and be mentally strong. There is no right or wrong approach. I just tried to focus on the coming cycle without thinking much about the future or whatever. It is funny, I was much calmer during treatment than before it. I had more life worries and existential thoughts before than during or after.
Thanks for reading if you have reached this bit. I have probably been too detailed about some stuff but I felt I had too. For other posts I will try to talk about different things that went on through my mind during treatment or things that just happened during hospital visits or appointments. Describing one cycle with these details has been a lot already!
Today is a bit of a shorter post as there is an interesting Tottenham v Liverpool now and this is taking priority 
