16th-23rd August: Feeling better, but more tumour marker worries

Thankfully this week I started to feel better and had a lot more energy.  I was able to do some work from home and it felt good to actually engage my brain and do something constructive.  Things were a little fraught at the hospital on Wednesday however.  

We followed the usual mid-cycle routine for a Wednesday.  The nurses took more blood samples and changed the dressing on my PICC line and took the usual blood pressure and blood oxygen levels before I waited to see the doctor.  Well, the Professor actually who I've begun asking to see specifically as I'll be fortunate in that I'll be able to arrange appointments privately in the future (all appointments and care to this point has needed to be done through the NHS as no private care providers will administer this type of chemotherapy), which will hopefully reduce the amount of time I need to wait.

I was keen to discuss my elevated AFP blood tumour marker from the previous week where the reading was 16 which unfortunately indicated that there may still be some cancerous cells present.  I believe the typical normal range is up to around 6 or 7.  This meant that over previous weeks my readings had fluctuated been 4, 19, 5 and 16.  The professor agreed that this didn't make any logical sense and couldn't provide a definitive explanation for this other than he hoped that the levels would again come down which would be checked from the blood sample I'd just had taken.  However, he informed me that if the levels remained high or had increased further, this would not be good news and would likely lead to more tests, CT scans and a review of my current treatment plan would need to be undertaken.  This obviously worried and confused me somewhat.  Why, when I was on a course of chemotherapy, would my readings spike twice to levels that would cause concern?  I understand that during chemotherapy tumour marker readings can temporarily increase - but supposedly not as high as the readings I'd been registering. Could my body be reacting in a way that is possibly an exception to the norm?

I also informed that Professor that I was suffering from bad Tinnitus and hearing since the start of my second cycle.  I already had some mild ringing in my ears before I started chemotherapy, but this known potential side effect of the Etoposide drug was really starting to affect me to the point that my hearing was extremely sensitive and any high-pitch sounds really cut through me.

The professor said, understandably, that the Etoposide drug was crucial in my treatment plan and I must receive the next cycle.  However, to try and minimise any further risks I could opt to have the initial three day part of the cycle over five days instead.  What a dilemma.  I was just about mentally prepared for the three days of treatment next week, but to be told this would be extended to five days was really some unwanted news.  And there are no short cuts by having the drugs over the five days as only the level of the dosage of the chemo drugs is decreased, yet the amount of fluids/saline I will actually consume over the five days will be increased.  

At this point I was edging towards sticking to the three day option, but understandably Jacki and the prof countered that by saying for the sake of an extra two days it would be foolish to jeopardise any potential long-term effects on my hearing.  Of course they were right.  Therefore, based on how I felt during the first three days of my previous cycle I'd already requested to stay in the hospital overnight, which meant that a two night stay was now being extended to five nights as I will actually receive the drugs Monday through to Saturday morning.  Not a week I'm looking forward to!   

I finished the appointment with the Professor feeling concerned and anxious as I knew I would be able to obtain my latest blood readings whilst I was at the hospital having my Bleomycin top-up.  We waited the usual two hours whilst the pharmacy made up the prescribed chemo for me (I can understand this wait as there's no point wasting expensive drugs if I wasn't signed-off as well enough to receive them).  Whilst receiving my chemo I asked a nurse (Elfie) if she could access my most recent blood results.  I could see she started to print them off and my heart started racing.  Please let them have returned to normal levels, I just couldn't cope with having to face the 'what next' unknowns if they remained high or had increased.

I quickly looked at the print out which contained dozens of readings, but no sign of the crucial AFP marker reading.  I asked Elfie why it wasn't on there.  "Oh, it appears that whoever's requested your blood sample hasn't asked for the AFP levels to be checked."  I could not believe it!!  How was it that this crucial reading given my previous week's results hadn't specifically been asked for?  It's things like this that do leave me feeling nervous regarding some processes and procedures that are in place in hospitals.  Who was responsible for requesting my bloods and why had they not asked for the AFP marker? Furthermore, why did the Professor not explicitly check that AFP was not requested for my blood checks?

Anyway, thankfully Elfie was able to take yet a further blood sample from me and this time ensured that the AFP level was analysed.  If it wasn't for this, the team of doctors and consultants would have met in two days time on my Friday to review my results and assess the best course of action, only to find that the key result they needed to review wasn't present.  This could potentially have held up and progress on further treatment by a further week which would have left me in that awful position again of not knowing whether I still had cancer and how my treatment would be affected.

Having finished my top-up of Bleomycin (which meant the end of my second cycle - originally the plan mean that this would have been the end of my chemo), we headed home and I felt ok aside from some usual mild flu symptoms which I tend to feel after receiving Blemoycin.  

A few hours later Elfie kindly phoned as my most recent blood results had come back.  I literally held my breath before she informed me of the good news that the AFP level had dropped down to 7 which was a huge relief.  I thanked her so much for taking the time to phone before informing Jacki of the good news.  Hopefully this will be the start of further such results over the next few weeks.

The rest of the week I spent doing some work coupled with spending as much time with Jacki and Lyla as I could whilst I felt well, knowing that next week was likely to be a lot less enjoyable.  I also took the plunge and completely shaved my head on the Friday.  By this point my hair was really starting to fall out, but I guess I'd done well to hold on to it for six weeks since my chemotherapy started.  I was prepared to lose it after two to three weeks.  So, for the next few weeks at least I'll be looking like a member of Right Said Fred but it's funny how quickly you get used to changes like this.  And Lyla for some reason seems to love stroking and tapping daddy's new shiny head, so at least someone's getting some enjoyment out of it.

5th-14th August - Cycle 2 and its nasty side effects

My second cycle of treatment started pretty much as I'd expected.  Three full days in hospital with various tests and checks before being connected up to the chemo for hours on end.  On the first two days there were a couple of administrative hold-ups which meant we weren't able to leave hospital until around 6pm so they were long days.  After the first couple of days I already started to feel very tired by the time Jacki and I got home so it was just a case of trying to have something to eat and a quick cuddle with Lyla before I headed to bed.

As expected, following the final hit of treatment on the Friday by the time I got home in the afternoon I was pretty much bed bound, but this time even more so than after the first cycle - which was already pretty bad.  I'd heard from other people that the second cycle was more difficult so the effects were to be expected, but I couldn't believe how long they were to last and how bad I felt.

By the following Tuesday I was still pretty much incapable of doing anything other than to stretch my legs for a couple of minutes at a time and for some unknown reason I started to suffer incredibly bad indigestion and heart burn which I later discovered can be part of the side effects of some of the tablets I was taking which, ironically, I was taking to help manage the chemo side effects.  It's almost like a vicious circle.  You take one thing to manage one side effect only for that to trigger something else.

Fast forward to the following Wednesday morning - when I was returning to hospital for a Bleomycin top-up - I felt incredibly ill and could almost physically not drag myself out of bed.  During the night I'd gone to the loo only to realise I was feeling light headed.  Next thing, bang, I'd fallen and hit my head on the bathroom sink which left a nice shining bruise and scratch on my forehead, which coupled within my thinning head of extremely short hair made me look look I'd been having a nigh time scuffle with someone.  By the morning I was feeling no better but thankfully I was sick before Jacki and I had to head to the hospital which helped ease the symptoms a bit.  At least I knew I'd be able to consult a doctor in order to try and fin out what I could do to try and make things better.

I had my usual change of dressings on my PICC line and bloods taken before waiting to see the doctor.  The registrar doctor we saw was extremely kind and helpful and we went through all the medication I was taking to try and come up with a plan of how to combat the sickness I'd been feeling.  Following this I headed off for my top-up of Bleomycin before going home. 

Thankfully by the Thursday I'd started to feel slightly better, although still completely lacking any real energy or appetite at this stage.  Whilst I had been trying my best to eat, it's safe to say I wasn't consuming enough calories to replenish what was being taken out of me.  I continued to perk up on the Friday and was able to login to my work laptop to begin trying to do some light work.  I just hope that I continue to pick up over the next few days which should leave a good week or so of feeling better before I have to start contemplating my third cycle.

29th July - A not so good day gets a lot worse

I arrived home after my treatment hoping to get a bit of rest whilst watching the cricket (England were all over the Aussies!).  Unfortunately, within about ten minutes I started to feel unwell.  From out of nowhere I started to experience really bad shivers and a tingling sensation in my fingers and toes and my temperature started to rise.  After around half an hour with the shivers getting worse (I was wearing three layers by this point) my temperature was over 38 and I wasn't in a good way.  Jacki was understandably starting to feel worried at this point and rang the hospital and they told me to come in without delay.  So after only being home for an hour or so, I was being driven back to hospital again.  So much for a nice leisurely afternoon on the sofa!

We arrived at the assessment ward I'd been directed to around 5pm and was seen within 20 minutes.  By this point my temperature had tipped over 40 degrees which clearly wasn't good.  I was assessed by a junior doctor and asked many, many questions about the symptoms I was feeling.  Without much delay I was having my bloods taken again (for the second time in 8 hours) before being hooked-up to an antibiotic drip and then a saline solution.  I was told that in my situation, given my low white blood cell count that the approach was to administer treatment first before necessarily trying to diagnose what the cause was.

I was left to lay down in a treatment room and whilst the shivering had gone I'd developed a really bad headache.  A consultant soon came to examine me and basically asked all the same questions that the first doctor had asked.  I felt like I was undergoing a verbal exam, but I guess it's better to be over diligent and I was thankful of the good care and attention I was getting.  I was informed at this stage that I was going to be kept in for one night at least and whilst this would usually have really disappointed me (who doesn't like being in their own bed), in the state I was in I was just glad that I wouldn't have to face another journey home in the car.  I didn't want to move anywhere.

The nurses kept checking up on me whilst I waited for a bed became available on a ward.  As my headache still hadn't gone I asked if there was anything else I could take in addition to the antibiotics and paracetamol I'd already had.  Thankfully I was given some codine which helped to ease the headache.  I must have started to feel slightly better at this point as I realised that the battery on my phone was getting low and I didn't have a charger with me.  Panic stations began to set in - talk about first world problems!  Jacki (bless her) headed out on a mission to try and buy me a phone charger which ended up involving a trip to a supermarket and then a late night pharmacy.  If only I hadn't been tight stubborn and upgraded my phone earlier, Jacki's mission to find a charger and cable would have been much easier.  Meanwhile, I was left laying in the examination room laying on my back using a sock as a makeshift eye mask to protect myself from the searing rays coming from the strip light directly above my head.

My surroundings for 5 hours.....

After a five hour wait I was finally transferred to the Teenage Cancer Trust ward  at 11.30pm.  Yes, I realise at 36 I might be pushing the boundaries of eligibility for this ward (albeit a lot of twenty year olds apparently use this ward), but the nurses had very kindly arranged this ward for me as it's a much nicer surrounding than some of the other wards (and I may have cheekily asked if there was a ward available that had Sky TV so I could watch the cricket the following day. :-)).  

A nurse on the ward did some further checks and gave me some more antibiotics through my PICC line before I was ready to hit the sack.  After being given a sleeping tablet to help me through the night I nodded off and only awoke to the nurse changing my saline drip and to give me some more antibiotics during the night.

The following morning I woke around 9am and felt so much better.  I was assessed again by a doctor and told that provided my temperature didn't rise again that I'd be able to go home later in the afternoon which obviously cheered me up a lot.  I had a shower and managed a really good breakfast in the canteen - the best I'd eaten in a few days.  Jacki came back to the hospital later in the morning and we spent some time with a family who were with their daughter who was undergoing her last day of chemo so their spirits were high.  One thing I've found really surprising so far during my treatment is how personable and upbeat people are, regardless of their situation or prognosis.  It's really refreshing how people cope with their situations, it may sound corny, but it is really inspiring to see how people, many of whom have a much worse prognosis than I do, mange to deal with their illness with such dignity and good humour.

The communal lounge in the Teenage Cancer Trust ward....

Oh, and yes, I was able to watch the cricket too in the communal lounge which is a brilliant facility.  There's a large TV, pool table, guitars, computers, equipped kitchen - it's such a great facility and a great way to help younger people who are going through a tough time.  Thankfully I wasn't the only one wanting to watch it on the communal TV so it didn't feel too guilty.  Better still, in the early afternoon I received the confirmation that I was able to go home (although it did mean I'd miss Domino's pizza night on the ward) and was going to be prescribed some further oral antibiotics, so after another couple of hours we were on our way and I was back home by late afternoon and was relieved to put the past 24 hours behind me.  I still don't know what brought on the high temperature - was it an infection or a reaction to the Bleomycin drugs?  As yet, I don't know, but hopefully the blood samples will reveal all and I'll be updated at the hospital next week.