It's been some time since I updated this blog as I didn't want to pre-empt how things were going to proceed after my chemotherapy finished. Unfortunately, no sooner had I finished chemo and started building my strength up did I undergo a biopsy on the lump on my thyroid which identified the lump as being suspicious and needed removing to assess it further. The Consultant now informed me that he thought there was in the region of a 20% chance that this too could be cancerous and would be in no way related to the cancer I'd just been battling - talk about some potentially rotten luck (and so much for yet again being previously told the lump was nothing to worry about)!
So on 1st October I was admitted to hospital to have a partial thyroidectomy which involved removing the right side of my thyroid. Thankfully, whilst I was admitted overnight, this operation was fairly straight forward and nowhere near as tough as getting through the main parts of my chemo. At this point on my journey being told you need this operation which will result in having a scar on your neck and will take time to heal was really nothing to worry about, certainly when compared to the worry of having a one in five chance of being diagnosed with another type of cancer.
Following the operation I then had that awful period of waiting yet again until the results were known and I'd know what my fate would be. Thankfully, in that time I had my first post-chemo check-up and the results were all good and no tumour markers were elevated. Yet again, the Doctor could only suggest that the spikes in previous readings were due to adverse reactions due to my liver or kidneys. The upshot of all this is that in all likelihood I was over-treated in that I was given a third round of chemo when the original plan was to have two. Still, given the circumstances I can't fault that approach and over treatment's certainly better than not enough.
Fast forward to 14th October when I had my follow-up appointment to receive the thyroid results following the pathology after the operation. Jacki and I sat anxiously in the waiting area which was deserted apart from the two of us. I was dreading being called in and needing to do the dreaded walk into the consultation room knowing you're about to hear your fate. Thankfully, the Doctor walk past and saw the two of us and as we were the only two there he straight away said "it's ok, you can smile" which I knew straight away meant it was good news! Once we'd actually sat down in the consultation room he was able to confirm that the histology report confirmed that the lump - whilst very large at 6x5x4cm - was benign and needed no further treatment (even the Doctor said he was surprised by this outcome). I can't tell you the joy and relief Jacki and I felt on hearing this!
This meant that in the space of six days I'd had good post-chemo results and had it confirmed that I needed no further treatment on my thyroid which would have meant another operation followed by radiation treatment via a tablet (and isolation for a few days). It was so good to get an upturn in fortunes given everything that had gone before. I literally felt like a huge weight had been lifted from my shoulders and the world instantly seemed a better place.
Following these two pieces of news Jacki and I are heading off on a well deserved holiday in a few days to live it up in Vegas for a week. Whilst we'll miss Lyla greatly, it'll be so nice for the two of us to get away.
As a result, all being well this will be the last blog entry I'll be writing for a while, maybe ever. I don't have any more follow-up appointments for my cancer until February 2016 when I'll have my bloods tested again and likely have a CT scan. Until then all I can do is work on the premise that everything will be fine in the long run and there's nothing else to worry about.
So to try and bring all this to a close, it's safe to say that the past four months have certainly been a roller-coaster for me and all my family and friends and I've certainly learned a lot from the experience.
I've learned an awful lot about Testicular Cancer and how many variants there are of just this one type of cancer, and also how many different types of chemotherapy there are and just how gruelling these regimes can be. I've learned that I've been extremely fortunate to have caught the cancer early and to be within such close proximity to a specialist Oncology unit that could provide the necessary treatment to beat it.
I've learned how amazing NHS nurses are at providing such amazing compassionate care under very trying conditions, whereas certain doctors and clinical nurses could certainly use some training on how to deal more empathetically with their patients.
And most of all, I think the most important thing I've learned from this whole experience is just how uncertain life can be and how important friends and family are. It's certainly true to say that when someone's diagnosed with cancer it doesn't just affect them, it has just as much impact to those who are close to the person. I'm just so fortunate that I have Jacki in my life who has been with me literally every step of the way, and in those times when I was feeling down and ill, she was always there to pick me up again and convince me I could beat this thing. Of course, having Lyla as well (who's just turned one) was all the inspiration I really needed to keep going. On that point, I have so much respect and sympathy for those who aren't as fortunate as me and don't have the same support network and may have to face their battle with cancer on their own. It really makes you stop and think. Finally, I know that life has a way of throwing up unwanted surprises for everyone, but one thing's for sure, when I overhear someone answer the question of "how are you" with "well, at least I've got my health" that's certainly one major positive to be thankful for.
Thanks everyone for reading.
David
Wednesday, 21 October 2015
Saturday, 12 September 2015
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.
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.
Sunday, 6 September 2015
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!
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!
Sunday, 23 August 2015
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.
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.
Saturday, 15 August 2015
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.
Saturday, 1 August 2015
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!
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.
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.
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.
Friday, 31 July 2015
29th July - Clinic and raised Tumour Markers. Another Chemo cycle needed
I woke up feeling much better and ready to head into hospital for the last of my Bleomycin top-ups which would conclude my first cycle of my treatment.
We arrived at the hospital early in time to have the dressing changed on my PICC line and my bloods taken before my 9.30am appointment. This time I'd asked to see Professor Joffe who had returned from holiday and I'd heard good reports about him.
We headed in for the appointment and Danny (the nurse I'd dealt with in the past) also sat in. I was asked how I'd been getting on before, unfortunately, I was informed that one of the tumour markers (a protein indicator) from last week's blood sample had spiked significantly. Typically the reading should be 5-6, the chemo could have led to an increase to around 8-9, but mine had spiked to 15! This is a firm indicator of a likelihood that some cancerous cells are still present and as a result, I was informed that I'd now need to receive three cycles of chemo rather than the two I was currently in the middle of receiving.
Obviously this was not good news and took me completely by surprise. By this point I was in the mindset that I was all but through my first cycle of chemo and only had three more weeks to go. Now, I was being told that I was, in effect, back at square one again and would need to face up to another six weeks of treatment. Looking at the bigger picture, however, I was told that these increased markers were not uncommon and that the third cycle was needed as a belt and braces approach to ensure that any cancerous cells were hit hard now, rather than the risk of recurrence later. In summary, my long term prognosis would not be affected by the change in my situation. In addition, having all but finished one cycle of chemo it was somewhat easier to digest the news that I'd need a further cycle knowing that I now only needed to face two rather than three had I have received the news before my treatment started.
Having finished my appointment with Prof Joffe, who was very helpful and informative, we waited for my drugs to be prepared (which can only be done once I've been given the green light at the clinic) and I then received a half hour Bleomycin infusion. I said my farewells to Will who was receiving his last Chemo treatment today and we'd spoken a lot of the past couple of weeks. We left the hospital around 1.30pm and I was felling fine.
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