9th August - My final day of chemo but more uncertainty

I set off for the hospital on an emotional high.  After nine weeks, hopefully today was going to be my last day of chemo.  As I've come to expect though, things unfortunately didn't go entirely to plan.

I had my bloods taken initially - as I do every week - although there was no need to change the dressing on my PICC line as I would be having it taken out in a few hours after my last hit of Bleomycin.  Hurrah!

During my clinical appointment with the doctor I was informed, yet again, that my AFP tumour marker from last week's blood test was higher than the acceptable norm which could indicate that there are still signs of cancerous cells.   Last week's reading was 35 which was some way higher than the acceptable norm of around 7 and an increase on the previous spikes of 16 and 19.  The science being that the higher the reading, the more chance there is of it pointing to cancer being present.  

However, Jacki and I pointed out that this was now the third time that my AFP reading was increased - and on each occasion the elevated reading came at the same point in the cycle (week two) - before the reading dropped again to an acceptable level the following week.  It was clear that the doctor hadn't identified this trend (slightly concerning) and couldn't offer a sound reasoning for why the level kept spiking.  After all, AFP indicators are only typically given off by Testicular Cancer and therefore, there is no logical explanation for why they keep increasing before dropping back down again.  If there were still signs of cancer it would be reasonable to expect the levels to remain constantly high or to increase further, which certainly shouldn't happen as I was receiving chemotherapy to tackle this exact problem.

The only other possible explanation for the increase in readings is due to abnormal functioning of my liver as this would cause an increase in AFP readings.  As a result of this possible explanation, coupled with the fact that this is the third occasion that the readings have spiked - immediately after I have received the majority of the drugs for the three weeks - I wasn't overly concerned and had already decided in my own mind to attribute it to this.  In fact, I would have been surprised if the levels weren't high for this reading given what's gone before, so at least I was shocked in that respect.  

The agreed plan with the doctor was that the AFP levels in my blood sample taken that morning would be checked before the results were discussed in the doctor's multi-disciplinary team meeting in two day's time.  However, I was told for the time being that in all likelihood I would need a further CT scan to ensure there was no cancer still present - which is no bad thing.

Following the doctor's meeting in two days time, I was assured (twice) that I would receive a phone call on the Friday to inform me of the outcome of my results and the agreed course of action.  Fast forward to the Saturday and as I had predicted, I had yet to receive a phone call.  If you've read some of my further posts you may guess by now that I was somewhat cynical that I'd receive the phone call as this is proving typical of the lack of patient support I've received from the doctor and clinical nurse.  However, in anticipation of this - coupled with the fact that I was eager to know my most up to date results - I rang the Ambulatory Care ward last thing on Wednesday once I got home and they were able to inform me that my AFP reading had reduced back down to 8 following that day's blood test.  This was a huge relief and again, in keeping with the spike on week two of a cycle followed by a low reading for the following two weeks.

After my clinical appointment I headed to Ambulatory Care for my final Bleomycin shot before having my PICC line removed.  This was an extremely quick procedure (much quicker than having it fitted), whereby the line was literally just pulled out of my arm in a matter of seconds.  When seeing the resultant line I was surprised to see just how much tubing had been running through a vein up my arm and down towards my heart over the past nine weeks.  Whilst this PICC line has ensured I haven't had to be attacked by needles every week when taking bloods or administering chemo, I can't tell you what a relief it was to be free of the pipes sticking out of my arm and the bandage needed to constantly cover them.

On finishing my treatment I presented the nurses with a hamper of goodies Jacki had kindly put together.  They seemed very appreciative, but this was really the least I could do to show my gratitude for not only their amazing levels of professional care, but also their kind hearted and empathetic manner in the way they deal with their patients. It may sound like a cliche, but they really are a credit to their profession and to the NHS. It's just a shame that the feeling I've got from the rest of the Oncology team I've dealt with is that they're dealing simply with a case rather than a patient.

Following my Bleomycin and removal of the PICC line I headed home and started to feel what's known as the 'Bleomycin shakes' whereby I started to experience some flu like symptoms and shivery, although thankfully I didn't become as ill as I had some weeks before which resulted in me being admitted to hospital overnight.

So, fingers, toes and everything else crossed that's the end of my chemotherapy journey - at least for the time being - and I can concentrate on starting to get my physical and mental energy levels up to where they once were, albeit this is going to take some time. I'm still some way off being in the clear, particularly given my unpredictable blood results, but I'm not overly concerned about this for the time being, especially as I know already that they have dropped back down again.

There's no doubt about it, it's been a tough nine weeks of treatment and I sincerely hope that I won't have to go through it again in the future.  I can only hope that all signs of the cancer have disappeared for the time being and that through the following months and years of monitoring that I won't relapse at any point.  As I mentioned in my last post I'm entering a new stage now where I just have to sit tight and hope that everything works out.  At least whilst I was receiving chemotherapy you know subconsciously that you're doing something proactive to tackle the problem, whereas now I just have to trust the odds that I 'should' be cured and won't relapse, but of course much like a a gambler who's going with the odds and had a punt on a dead-cert horse, there's no such thing as a sure thing, particularly with the variant of Testicular Cancer I had (Embryonal Carcinoma) which I understand can lead to higher instances of relapse than a lot of other variants.

On top of this I also need to wait on biopsy results from a thyroid sample which were taken the day after I finished chemo (the fun times I spend in hospital just never seem to end!).  This is due to a result of my initial CT scan for my cancer spotting that I have a goitre on my neck, which again, unfortunately, has a low chance of being cancerous. Whilst I've been told "don't worry, it's probably nothing" by doctors, I can't help but be cynical as this is exactly what I was told in the days and hours before I was informed that I had Testicular Cancer three months ago.  This means that rather than being able to draw a nice bold, solid line under everything following the end of my chemo, I've still got two clouds hanging over me which meant I was only able to draw a slightly dashed line under things and partly celebrate the end of my treatment on Wednesday.

24th August-5th September - Cycle 3 treatment, effects and my newfound baldness

By the start of my third cycle I'd joined the ranks of being a full on baldy.  I did very well to hang onto my hair as long as I did, but alas, around five weeks after I started treatment it had really begun to fall out, so much so that I hardly had to shave my head, but instead simply had to rub it in order for most of it to fall out.  So, here's my new bald look (Right Said Fred anyone?).

I arrived at hospital on the Monday morning prepared for a long week of treatment.  In fact, the first couple of days went ok and as I'd experienced on other cycles the side effects didn't start kicking in until the third day.  Monday was a very long day and I didn't finish my chemotherapy on the Ambulatory care ward until just before 9pm after which I headed to my room.  

Just me left on the Ambulatory Care ward on Monday evening:

This was my accommodation for the five nights I was in and all in all they were very comfortable surroundings in a minimalist Travelodge type of way.  Much better than being on a proper hospital ward anyway.  Again, I'm fortunate to be within so close reach of a leading hospital that offers such facilities.

Following the end of my treatment on Tuesday I even felt up to head into Leeds with Jacki to grab a bit of fresh air and a bite to eat as my appetite wasn't affected at this stage.  I did feel a bit clumsy however having to walk around whilst carrying the 3 litres of saline solution in my backpack which I was connected up to.  

The frustration of being constantly connected to drugs and/or saline for 24 hours a day really becomes a bind after a while as it greatly limits the freedom you have to move around.  And that's not mentioning the incessant beeping from the saline pack during the night every time a kink forms in the line which, of course, seemed to happen each time I turned to my favoured sleeping position.  To add to this, the room I was staying in had two skylights to make up for the fact that there were no windows so I was awoken early each morning (at least it wasn't mid-summer!) to rays of light pouring down directly above me. It's safe to say I didn't have the best nights sleep over the five days.

By Thursday the side effects had really started to sneak up on me and I started to feel really tired and lethargic on top me starting to feel down and depressed knowing I still had two more nights before I could head home.  Thankfully I'd been able to see Lyla on Wednesday which helped lift my spirits, but it was tough being away from her for so many nights, particularly when you're stuck in hospital surroundings every day.  On the first couple of days I'd had the energy to grab breakfast and go for a walk outside before my treatment started, but by Thursday I simply didn't feel up to doing this and just waited in my room before I headed down for treatment.

As usual over the whole week the chemo nurses were absolutely amazing.  I really can't speak highly enough about how professional yet personal they all are and how they take the time to really engage with all the patients.  The doctors could certainly learn some useful lessons from the nurses in the way they deal with their patients as it's become increasingly evident to me over the weeks that as far as the doctors are concerned I'm simply another case file on the converyer belt.  Whilst I'm obviously indebted to their knowledge and experience, it would be nice for them to appreciate a bit more that they're dealing with individuals who are experiencing a life threatening illness and so it's only natural to feel worried and concerned, and with this come a lot of questions and anxiety which I feel the doctors could deal with using more empathy.  

I was so relieved to be disconnected from my saline pack before heading home on Saturday morning, although by this point I was feeling very unwell so was in no way able to celebrate.  I lost count of the amount of hours I slept over the weekend and didn't have the energy to do anything - sitting outside in the garden for ten minutes like a zombie was about the highlight of what I was able to do.  I also struggled with some of the side effects of the countless drugs I was taking including steroids and anti-nausea tablets which, whilst intended to combat the effects of the chemotherapy drugs, also bring their own side-effects, the worst of which for me was severe acid indigestion and involuntary shaking on my left foot and hand caused by the steroid tablets.  

By the following Wednesday I'd started to pick up a bit (relatively) which was just as well as I was back in hospital for another Bleomycin top-up which thankfully went without any problems.  The doctor also confirmed in my clinical appointment that my tumour markers had remained low (thank goodness) and so I only had the following Wednesday's session to go and I'd be all done - assuming my tumour markers don't take an unexpected spike again as they've done at the same stage of my previous cycles.  To say I'm still nervous about next week's results would be an understatement.  

I was also a little taken aback by the doctors warning that it would likely take up to six months before my energy levels would return to normal levels again.  At this current moment I can believe this as whilst my mind is starting to feel like its getting back to being in the land of the living again - although I'm definitely suffering from what's referred to as chemo brain (very fuzzy head and my short-term memory seems to be terrible) the rest of my body is lagging behind even more.  I'd prepared for my recovery to last many weeks after treatment had finished, but the thought of this lasting up to six months is a little concerning.

I'm also starting to come to the realisation now as I'm about to reach the end of my treatment - which I'm extremely happy about - that I'll also be entering the next phase of the unknown where I won't be taking any proactive steps to tackle anything.  As unwelcome as the chemotherapy has been, at least I know I'm doing something positive to tackle the problem, whereas all I'll be able to do from next week is wait and hope that my next scan in a few weeks shows that any signs of the cancer have completely cleared. But, as I happened to read in a quote, "What's the point in worrying about the unknown? It's akin to walking around with an umbrella up waiting for it to rain."  Very true, but easier said than done!