My first chemo began on the 21st of April at 4 pm. I had a wonderful nurse who sat with me, monitoring my reactions during the whole process which really made me feel confident in the whole experience.
I'd drunk a litre of water before I came for treatment and had to have my boyfriend stop at a petrol station on the way down to the Royal Marsden as I was simply bursting so I think next time, I'll start drinking my water while at the hospital where it's easier to find toilets!
I've read so much and watched so many videos of other Triple Negative Breast Cancer patients like myself and all have said to drink lots of water on the treatment day as well as the following days afterwards so I was determined to follow this piece of advice to the letter to try to not suffer from all the expected and dreaded side effects.
Though my nurse during chemo was lovely, I got caught up in chatting with her and distracted myself from my drinking water regime and of course, there was so much to experience that I felt like I had the attention span of a hummingbird! The strangest experience was the slow steroid injection that started off the whole process as it was used to flush my system to suppress my immune system from attacking the chemo medicines that would follow. As it fed into my IV, I felt initially strange and then slightly unpleasant tingles in the top of my head and down to my crotch which felt a lot like experiencing an intense type of bladder infection. It didn't last long and when I told her what I was feeling, she pressed the syringe more slowly which gave me less of those unpleasant tingles.
Following this steroid, I was left for a short while to let my body settle, so while I waited for my nurse to return, I looked around at all the other occupants in the chairs around me. I mostly saw women much older than myself and in varying stages of unhappiness - some were curled up with blankets wound around them and bald fuzzy heads sticking out while their medicine beeped above them like scary metal trees with long vines leading to hidden scrawny arms. It's odd feeling young at the age of 45, but apparently having breast cancer under 50 is a rarity here so the majority of patients I've been seeing are much older and often quite overweight.
When my nurse returned, she brought a yellow bag with three big syringes in it which contained red fluid. I took a picture to document it as it's quite an occasion to see the chemicals that are going to eradicate the cancer from my body. When she began to insert it into the machine above me, I said out loud to the red fluid as it came towards my vein, "Welcome to my body and hope you enjoy the tour and fight my cancer starting today!"
I felt like there needed to be an opening ceremony or something and my nurse was supportive of this so perhaps lots of others have done this sort of thing too! Maybe on my last chemo day, months from now, I'll have a closing ceremony too.
As it went into my system, I felt completely fine which made me feel a bit of a fraud as I was cheerful and chatting with my nurse as if I was doing something completely different. Briefly, I wondered if the other patients around me were annoyed with my cheerfulness but no one said anything. Perhaps my next sessions won't be as cheerful.
After my chemo, I was able to walk out to meet my boyfriend to drive back home and even felt well enough to snack on crisps on the journey back, which must have been a good thing. I didn't drink enough water though and now I'm aware of this mistake as I should have been paying more attention to drinking water but my mind was in a sort of fuzzy state which got worse as we got home and when I tried to eat plain toast with a banana as my light evening meal, I had a funny reaction where I could only swallow if I tipped my head to my chest but wasn't able to swallow comfortably if my head was level with my body.
I was calm and just thought that maybe I'd accidentally eaten something with hazelnuts which tends to give me swallowing difficulties so in case something in the medicines had any tree nuts in them, I called the Royal Marsden Macmillan Cancer hotline to ask if it was a typical symptom to which they decided it wasn't something they were familiar with and instructed me to head to the nearest A&E to get it checked out in case it got worse.
So off we went back into the car and first drove to the hospital nearest us which is St. Albans Hospital which we discovered on arrival that they didn't have an A&E so we then drove to the nearest one which was Watford General - my least favourite hospital. I had to go there for an MRI a few weeks ago and the hospital staff and most of the patients didn't follow lockdown rules which was shocking in a hospital!
At Watford General, I had to go through crowds of people all coughing and sneezing to get to the reception, where I presented my cancer card and then the lady couldn't hear me when I told her what I had that was wrong with me so I had to bellow that I have breast cancer. A woman and child came up while I was standing around waiting and as the child had what appeared to be a streaming cold, I took several steps away as I was overly conscious of my vulnerability with a suppressed immune system - the woman spotted me do this and gave me a filthy look and told me to stop being so rude as it's just a cold and won't kill me to which I responded with that I have cancer and can't guarantee that.
The receptionist returned and had me meet her outside the main collection area so she could lead me to another waiting area inside which I had to move away from again when several people turned up and wanted to squash in next to me. It was the most disorganised hospital with seemingly no awareness of the need for safely looking after people in my situation.
I was finally seen by a nurse who took down my details and then lead me to another room in a remote part of the hospital where I was told to sit and wait to be seen. I waited 2 hours before I pressed the call button to ask when I would be seen as my inability to swallow was making it hard for me to drink water and because I wasn't hydrating myself when I should have been, my side effects were gaining momentum and I had a lot of nausea, raging headache and significant pain in all my limbs along with utter exhaustion. The nurse who came in to turn off the call button got annoyed with me and told me that there were three people ahead of me and that I'd be seen to when it was my turn. I asked her if any of those patients ahead of me had just done their first chemo session and were in the same pain I was in as well as not being able to swallow, which I felt should be taking more priority than just waiting for 2 hours. She told me that there was a man with a suspected broken leg, a woman who had the flu and another person who had a sprained arm and none of them had cancer or was dealing with swallowing problems coupled with all over side effects from chemotherapy.
I was left again for another hour before someone came in and set up an IV line to administer paracetamol and anti-sickness medicine which helped me feel less sick but still in pain. By dawn, I was given morphine to try to alleviate the pain in my body and head and then the doctor wafted in and suggested that I must be an anxious person because after taking my blood and shining a light in my mouth, they couldn't detect any issues. One of the nurses asked if I was under any stress which I found laughable in a very cynical way and multiple times during my 6 hour wait in their hospital, I wondered how on earth the nurses and doctors got their jobs. They told me to share a toilet with a woman who had the flu and was vomiting constantly which seems utterly bonkers to suggest to a cancer patient with a compromised immune system.
I left the hospital slowly and found it strange how my once healthy body, couldn't walk at my normal speed after so much pain. At the doorway of the A&E department, I had to stop to ask two patients dressed in hospital gowns to give me room to walk out as they were blocking the door and smoking. Neither of the women moved and just stared coldly at me. After squeezing by them, they asked me whats my problem and I responded weakly that smoking can give you cancer to which I got blank cold stares again. I mean really! My future healthy self would like to come back and smack those morons for first blocking the A&E doors and then refusing to move aside when we're all supposed to be social distancing in the midst of a pandemic! Watford General, I do not like any part of you!
Watford General was a horrible A&E to visit and if anyone who works there or has visited there reads this and can't understand my lack of passion for the place then I hope it serves as a good kick up the pants to improve the horrific treatment of cancer patients in the future.
My poor boyfriend had to sit in his car in the car park outside and just wait for me. Because of covid, he can't come into any hospital as no visitors are allowed so during my six hour wait, he had no access to a toilet and wasn't able to sleep so when we drove back, I kept the windows down and we played the radio loud to keep him awake as he'd not only driven me to the Royal Marsden and back the day of my first chemo but had had no sleep since he'd been stuck waiting for me which made me feel very worried about his health. Because of this, I've decided it may be better to find out about hospital transportation for any future emergencies as well as potentially arranging hospital transportation from St. Albans to the Royal Marsden for my treatments.
I swear, having cancer is like being given a new job that I don't get paid for and would really help if I had a personal assistant in order to keep up with all the paperwork, reading material, prescriptions, schedules and all the endless chemo treatments and instructions. I'm still in the process of setting up the benefits I'm entitled to which is being helped along by a lovely Macmillan benefits lady who fills out forms for me online when I can make time to read her emails with attached forms and then respond in a normal time....so far chemo has gotten in the way of me responding lately so I'm in a constant game of catch up. Hence the wish for a personal assistant as some days, I just want to nap and do very little.
Well, we arrived home safely and I ate biscuits and a banana without too much struggle and then took more anti-sickness medicine before I went to sleep at 7 am to try to catch up on the lack of sleep we'd had while at A&E. Day 2 after chemo was pretty rough and finally once I was up around lunchtime, I began to properly drink lots of water which helped soooooo much as my side effects soon felt less oppressive. I did call the Royal Marsden hotline a lot that day but I felt like I was in a void of exhaustion and had to be reminded about so many things medicine related. They were lovely and very helpful and I'm so pleased we patients have a hotline of lovely helpful nurses and doctors to keep us on track between treatments. My trouble swallowing is being researched by my oncology pharmacist who is cross-referencing all my multiple food, pet and seasonal allergies to see if anything in my treatment or medicines have anything in them that may cause delayed reactions. I'm hoping that for my next treatment, I'll be kept a little longer, to see if anything develops so that no more visits to A&E are necessary. I didn't feel at all anxious even when not being able to swallow so I don't think it's anything to do with anxiety. It felt the same as when I've eaten a hazelnut so I feel like it's got to be allergy related.