Trying to continue with the original timeline I had in mind...
I remember recovering pretty well on the 'off-week' of my first cycle. That weekend I managed to go for a few walks with my girlfriend and felt that somehow I was almost as normal. My fever, my abdominal discomfort and all other 'physical' symptoms disappeared as soon as I started the chemo, which was really good. One of my worries was having fevers again and not distinguishing the lymphoma fevers from an infection fever, but luckily as soon as you get the drugs and the steroids the fevers seem to stop.
I lost all my hair on day 13-14. On a Friday I went to the toilet and realised that all my pubic hair was falling! I was like, shit, this means I have accumulated a lot of chemo in my testicles and I will be infertile! Obvs it doesn't work this way but it is what I thought. I have no idea why the hair loss started there, but I didn't mind. The next day I could take my hair out by just pulling it slowly, so I decided it was time to shave it before messing up the whole bed the next night.
Right, the hair part... I still had quite a lot of hair at the time, but I had been gradually losing hair over the previous 3-4 years, so I knew I was gonna be bald at some point (I had the Turkey trip in mind, but had not decided it yet); but this didn't make it easier to accept, so shaving it was a struggle. I started to do it but it was super hard to process what I was seeing in the mirror. Fucking mirrors during treatment, honestly, they don't make it easy for you. I shaved most of my head but left a strip of hair in the middle just because I wasn't ready to be 100% bald that particular day. I felt too vulnerable. The next day I just finished it off and I was like ok not that bad. It helps that all the hair was ready to go by that point and that it wasn't a gradual loss - otherwise you keep thinking that 'oh it might not be that bad, maybe I keep this and that' only to be disappointed later on.
Then I was thinking, damm, how much worse must it be for women. How could I complain myself?
Anyway, losing my head hair was not as traumatic as losing my beard. I thought I would keep the facial hair just because you know these hairs are so thick and strong... but then I found myself picking them out from my skin. Wild. Beard was gradually falling over the next weeks. By the end of treatment I kept about 20-30 eye lashes on each eye and about 30% of my eyebrows. I have (now, and before treatment) very dense and long eyebrows and eyelashes, so it was very noticeable. I was so happy I didn't lose my eyebrows at all though, and I don't know why I didn't. I also kept some hair in my legs and arms, but the 'density' was so much lower than normal.
So, I got a cap and I started wearing the damm cap all the time for the next 5 months. I could not not wear it. At home I would be okay without it but outside I couldn't face it. But I couldn't because I looked sick, I had this yellow-ish skin color, this swollen cheeks, these dark shadows on my eyes... So with the cap I sort of felt I wasn't as sick. I also didn't like my parents to see me without the cap, so I was mainly wearing it the whole day.
I never in my entire life wore caps but I found an Under Armour one which suited me a lot, it was cool in a way. I also used hats when it was cold but in the chemo ward it was too warm for hats.
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Anyway, Cycle 2...
Monday was about going to hospital again. Buuuuu. As I changed hospital, I had to get used to the new cancer ward -> waiting rooms, older building and facilities and another thing which was not nice at first... Not being allowed to have a companion! With time I think this was better for me and better for my dad/mum/girlfriend who would be the ones coming along. But that first day it was a bit scary. In this hospital waiting became a bit of the norm, I was always told to come around 9 but wouldn't go in until 10 or so. Then I would have to 'accept' to get treatment, and then they would start cleaning the PICC line connection and getting some saline inside. Another half an hour or so and you'd get the first drug. Again, waiting for the pharmacy to get everything ready was a painful process which just got worse with the other cycles, as you wanted to spend as little time as possible in the hospital. During this time I was so stressed that I couldn't read or watch series - I thought I would get through so much of the Netflix catalogue during chemo, but I actually didn't, I couldn't focus on one thing. Same with the books, I read a few things here and there, but nothing else. I did listen to a lot of music though.
Another thing that really messed with me was the smell in the ward. They would use this cleaning product for the stands and the recliner sofas that would just impregnate your clothes with a strong disinfectant smell. Because it was the first time for me smelling that, I develop this link of this smell = me feeling awful because of the chemo. I would just feel a bit sick smelling it. And every day I would have to put all the clothes to the wash! As soon as I got home I would remove everything and put it in the washing machine... I had to avoid accepting that smell at home, if that makes sense.
Anyway, first day of 2nd cycle was also awful, same as the 1st cycle and same as the cycles to come. I fooled myself thinking that the 2nd time around it would be easier and I would feel better because it wouldn't be such a 'new' shock to my body, but no, after the cyclophosphamide I would just sink and feel like the worst flu with a hangover. Went home and didn't eat nothing until the next morning. It's funny how during chemo I found joy eating the most boring food like all-bran flakes or plain white bread. I am not sure I have eaten any of those flakes after completing chemo. I would only eat because taking the steroids on an empty stomach was like drinking three expressos. But I would only take the flakes one by one and after a handful I would just stop. I would take these with lemon juice as this was also great to minimise the awful taste in my mouth.
Cause that's another thing - mouth taste. I would just have this metallic taste from days 1 to day 10 or so. I would drink all the time which was good but this was driven by the need of clearing this taste from my mouth. As said, lemon juice mixed with water, some squash or adding vitamin pills to water. Also decaff coffee helped a lot - I couldn't drink more coffee as the steroids were already putting me on edge. A lemon and ginger tea was also very nice for these days.
The other awful thing I struggled a lot with - the smell coming from my body, especially the smell of my pillow. It would smell of chemicals and just like an alkaline substance (sorry I have worked with chemicals for years so I have picked a few things from the job...), intense and penetrating. You get used to it, but omg when I would go to bed it would still have that kick. My urine would also smell like that for days during chemo, so again I guess it is your body secreting all the drugs you've received.
But from day 3 everything starts to look brighter again as you just eat like there is no tomorrow. When you are bored you find so much joy in eating. I don't know how much my calorie intake was from day 3 onwards but probably 3000-3500 calories easily, and I was not even doing three thousand steps per day.
So, apart from the smells and the tastes, the rest was 'fine', same as the first cycle. Obviously what worried you in the first cycle (allergic reaction, increased heart rate, weird color urine, fatigue, etc) does not worry you that much anymore. What was a bit worse this cycle was probably some pain and breathlessness on days 10-11 due to filgrastim injections (bone pain) and the drop of red blood cells (heavy breathing, dizziness)... I did get worried when I was having oxygen saturation at 92-93% again, but I was being calmer this time around. I remember that day I decided to go for a walk (at a very slow pace like 15 minutes per km) and after 10 minutes my legs would start burning! Like all the lactate had built up already! It made sense when I thought about it... my body didn't have enough red cells and with low oxygen being supplied to the muscles you would probably just start making lactate and your muscles would get sore! I got sore muscles the next day and so I then understood that day 11 or day 12 of the cycle for me was just a day to stay at home sitting in the sofa. Even putting the dishwasher or a washing machine got me knackered. I don't know how people with kids can do this.
The rest week was again fine and I was working (from home), just having to do little breaks and lying down every couple of hours, because I was getting really tired despite going for 9 hour sleeps. My sister visited on the weekend and I although on the Saturday I managed to keep the pace of doing a visit to a village and walk 8-10k steps, the next day I was really tired. I couldn't go with them to Oxford because I just felt exhausted from the day before. It is funny to put in perspective this tiredness after walking for a bit... There were days in the past when I would cycle for 3 hours and would be feeling better than this!
I was getting used to the PICC line too and to the constant visits to the hospital, which somehow made me feel 'safer'. The visits to the consultant are a bit of a tick box exercise -> if your blood counts and liver/kidney enzymes are fine, you just carry on. No rest, no stop, just carry on. Very difficult to get into the mentality of 'fight mode', you just have to carry on and you can't stop.
I am getting a bit bored of writing about the cycles so next posts I will try to choose other topics.
Thanks for reading, if you've made it to the bottom!
