I woke around 5:20 and couldn’t get back to sleep, despite feeling very tired. For around ten minutes I got a stitch-like pain in my right side which I hadn’t experienced before. It didn’t cause too much distress though and went away fairly easily.
A nurse came in quite early to check my blood pressure, temperature, etc, and to take some blood from my PICC line – no blockages this morning! My mum called a bit later and I spoke to her for a while. After the night shift nurses handed over the day shift nurses around 8 am, I was brought my morning Clexane injection, Metocolopramide and Omeprazole.
One of the doctors wanted me to have another chest x-ray, so my nurse called ahead and arranged it with the radiology team. I got myself up and dressed and headed down one floor for the x-ray. It was all pretty quick. I was feeling quite tired and fragile, but I coped ok.
I spent the next few hours sitting in bed, reading a bit and trying to progress with writing the blog, which I was about three weeks behind with. I had visits from a nurse, who pricked my finger to check my blood sugar levels, and a doctor, who just came to see how I was getting on.
I had a bit of hospital food for lunch: broccoli, peas, carrots and potatoes. Pia arrived not long afterwards. It was a beautiful day and we went for a walk up to the university gardens and sat there for a while. We then walked a bit further and dropped into a couple of shops before heading back to the ward. I was feeling quite a bit more capable than I had been in the morning.
We were back by 16:00. I was given my Dexmethasone dose for the day and was hooked up to my IV pump around 16:30 for the day’s chemo, which consisted of: Etoposide – 500 ml over one hour Etoposide – 500 ml over one hour Saline – 1000 ml over one hour Mannitol – 400 ml over half an hour Cisplatin – 500 ml over one hour Electrolyte solution – 1000 ml over two hours Bleomycin – 250 ml over two hours
Pia and I ate a bit. She had brought me some rice and vegetables from home. Some hospital food also arrived, so I had some of that too: vegetable pie, potatoes and some other veg. We watched a film together and then Pia left shortly after 19:00.
The second day of inpatient chemo is always a long tiring session. I was quite tired but spent most of the evening awake, trying to add to the blog. I was utterly exhausted by midnight and tried to sleep as the final two-hour bag of Bleomycin was being infused. I was disconnected from the IV pump a bit after 2 am, and slept well after that.
Monday the tenth of June was my birthday. I was woken to an amazing fruit salad and a delicious loaf made of oats, apple, carrot, sultanas and maple syrup.
I was feeling tired, but fairly good in the morning. I had an appointment at 9:00 so I headed out to that, after which I spoke to my mum on the phone, and a few other people. Then I settled down to write to my integrative physician, as I had a few questions about my supplemental protocol.
As I got into the afternoon I was starting to feel a bit under the weather, slightly dizzy and light headed. We had to pop out briefly after collecting the girls from school, as we needed to get some medicine for a sick chicken. We kept two chickens in the back end of the garden, but one of them had started gasping and hadn’t been looking well for a couple of days. It looked like it could have been down to a type of worm, so we drove to a farmers’ supplies store to get some worming medication. Whilst at the store I found that I was feeling more and more unstable, so I was glad to get home and chill out for a bit.
Pia mixed the worming medicine with some chicken food and tried to feed it to our sick bird. Unfortunately she promptly died.
When it came time for dinner, I tried to sit at the table but started feeling unwell after a minute or two and had to lie down on the sofa. I was eventually able to eat whilst slouching. I even had some incredible frozen dessert which was made from blended cashew nuts and homemade berry sorbet.
After eating some of this, I started to feel shivery, which I thought may have just been from having eaten something cold. However my temperature had risen to over 37 C. Whilst I would not normally blink an eyelid at this, I knew that an elevated temperature in a chemo patient is a cause for concern as there’s a risk that it could be caused by an infection. Chemo patients often have low white blood cell counts, in which cases infections can be particularly dangerous if not treated immediately.
I monitored my temperature and it went up to 38 C, then down a little, then back up over 38 C again. At this point I called my oncology team’s emergency number. They advised me to get in to see them straight away. Unfortunately it would have taken me an hour or more to reach them in Bristol, so we agreed that I would go to accident and emergency in Bath as it would be less than half the journey time.
It was after 23:00 at this point. One of our friends came over shortly after to stay with the girls and Pia drove me through dark wet roads to Bath. We arrived after midnight.
When I got to reception, I found that the nurse I had spoken to in Bristol had called ahead to Bath to let them know to expect me. They were all ready and I was walked straight through to a bay in their high care section. My temperature had already started to come down at this point, but they wasted no time in treating me on precaution for neutropenic sepsis, a condition in which a patient’s neutrophils (the white blood cells which act as the body’s first line of defence) are depleted and there is suspected infection. This meant an intravenous dose of high-strength antibiotics and some other IV fluids. Despite having a PICC line, the nurse dealing with me insisted on sticking a cannula in my wrist. It was nicely done but perhaps unnecessary.
After several hours in A&E, I was sent for a chest x-ray and then moved to the hospital’s chemo ward where they had found a bed for me for the night. The good news was that my neutrophils had a phenomenal reading of 7.5 (anything above 1 is considered adequate) and signs of infection were normal. This was by far the highest my neutrophils had been since I’d started having full blood counts taken a few weeks earlier. I’m sure it was down to the Filgrastim injections that I had been taking since day four of the cycle.
Pia drove home after I’d settled down, around 5:00. After getting home, she didn’t get much rest before having to get up and get the girls ready for school. I slept a little, but not much, and was pretty exhausted in the morning.
Around mid morning, one of Bath’s consultant oncologists came to see me. He was happy that I could go home and said that I’d done the right thing to come in and get checked out, given my symptoms. He suggested that the fever may have been a side effect of Bleomycin.
After a nurse had removed my cannula, Pia came to collect me, a bit after midday. We got home and had something to eat. I was fortunate enough to be able to have a sleep on the sofa after that, but Pia had to head straight out to collect the girls and go to town for an appointment.
After I woke, a whole comedy of errors ensued after our last remaining chicken was chased out of our garden by a predatory neighbourhood cat, and ended up running along the road trying to find a safe haven. I was feeling quite delirious but was home alone and had to try to deal with the situation myself. It took some time, and involved me losing my glasses in the overgrowth of a vacant lot, but I eventually managed to get our chicken back to safety (and then recover my glasses). I won’t go into any more detail, but it was one of those ridiculous scenarios in which whatever could go wrong, did go wrong. A happy result at least.
When Pia got home she was utterly exhausted. We were all in bed by 21:00, badly in need of some rest.
Since deciding to pursue chemotherapy, I’ve felt confident in its ability to help me and I take full ownership in following this path. It’s none-the-less a strange feeling waking up on the first morning knowing what lies ahead. I suppose it could be a bit like setting out on a mountaineering expedition with equal measures of optimism and awe at the scale of the awaiting adventure. Having had less than six hours sleep, Pia and I left the house around 8:30 for the hour-and-a-quarter drive to the hospital.
My first appointment was for a PICC line placement at 10:00. PICC stands for “Peripherally Inserted Central venous Catheter”. It is essentially a narrow tube, up to around 60 cm long, which is inserted into a vein under the bicep. The line terminates in a larger vein in the chest (hence “central venous”) and allows for chemotherapy drugs and other fluids to enter the body, via a drip, and for bloods to be taken.
There are a couple of advantages to using a PICC line. The first is that some of the chemo drugs, notably Etoposide in my case, can be damaging to the veins, and there is less risk of damage to the veins in the arms if a PICC line is used rather than a cannula. The second advantage is one of convenience and comfort. Having a PICC line in for the course of the treatment (9 weeks for me), prevents the need to be continually punctured and bruised every time I make a visit to the hospital. Some hospitals do not have a PICC facility and so don’t offer lines to chemo patients, however it’s a standard part of the process for BEP chemotherapy at the Bristol Haematology and Oncology Centre (BHOC).
The line was put in under local anaesthetic. Having it put in was probably the only thing I’d not been looking forward to, as I’ve never been great with needles or having things inserted into veins. However, there was no discomfort whatsoever in having it placed. Even having the anaesthetic injected was barely noticeable. It took about half an hour or so complete. After the line was in, some blood was taken to be tested for tumour markers, full blood count and liver and kidney function.
Following that, we headed up to the chemo ward to talk about the treatment with a nurse and go through a lengthy questionnaire. I was then sent for a chest x-ray. Pia and I then grabbed some lunch before heading to the audiology clinic to have my hearing tested. This was done to establish a baseline against which my hearing can be measured again after treatment. Chemo can cause some degradation in hearing in some cases, and tinnitus is a common short-term side effect. It can also, but rarely, be a long-term side effect.
We then headed back to the chemo ward, where there was a bed waiting for me in a room with three older gentlemen. After a bit of a wait, the last of my blood results came through (from the samples taken when I had my PICC line put in). I was weighed and had my blood pressure taken. Then I was ready to commence treatment.
A few weeks after surgery, in November 2018, I had my first appointment with the Germ Cell Oncology team at the Bristol Haematology and Oncology Centre. They are the specialist unit for testicular cancer in the south-west of the UK.
I was finally given my official diagnosis, based on my CT Scan and the pathology of the tumour that had been removed. My diagnosis was: pT1 stage I combined germ cell tumour (90% classical seminoma, 10% urea ectodermal tumour). My tumour measured 80 mm in length and had grown from the inside of the testicle. The only real testicular tissue that was left was in a thin layer around the tumour. The good news was that my CT scan was clear and no cancer cells had been found in the tissue of any of the surrounding blood vessels.
So it looked like the surgery had done the job. None-the-less, I was to be monitored for the next five years, just to be sure. This would mean monthly visits to the clinic for the first year or so, then progressively less frequent check-ups for the remaining four years.
A monthly check-up would involve a short consultation with either an oncologist or a specialist nurse. I would also have blood taken to check on tumour markers. Chest x-rays and CT scans would be taken every three months.
The tumour markers that are regularly checked for testicular cancer patients are:
AFP: alpha-fetoprotein HCG: Human Chorionic Gonadotropin LDH: Lactate Dehydrogenase
For me, HCG had been notably heightened prior to surgery, with a reading of up to around 180 IU/L. The normal range for HCG is from 0-5 IU/L. The other markers remained largely normal for me both prior to surgery and all three have stayed mostly within normal range since. The only exception to this was LDH, which has shown to be above normal at times, but it is well known that a high LDH reading can be triggered by a number of things that are not tumour-related, which means that it is only a reliable marker if it shows consistent readings.
As a side note, I’d made some changes to how I’d been living since my first visit to the GP in September. I’d stopped drinking coffee and alcohol. I’d also started detoxing using the Dr Morse method, something that I’d been meaning to do for a couple of years but hadn’t previously gotten around to. This meant that I was eating a lot of fruit and vegetables, most of it raw, and I was taking a number of herbal supplements to support the body during detoxification. I continued with this until January 2019, at which point I stopped the herbs and broadened my diet a little. I continued to avoid caffeine and alcohol.