Thursday 5th May was a statistical milestone for me as it is 12 months since my final Chemo session. I have recently found statistics a little difficult to identify with, as statistically speaking I should not have been ill in the first place.
During the early days of my recovery I spent most of my energy trying to get back to my previous routine. In hindsight, I perhaps pushed back a little too hard and fast as I am now struggling with a less than perfect immune system and the fatigue did get the better of me on a number of occasions. I am glad to say, however, that my health is otherwise pretty good and I have been working, partying and excercising at a high rate and in equal measure.
A New Normal
Getting back to normal seemed like an obvious objective from a hospital bed, but it since has felt like an unnecessary and overwhelming challenge. For me, I can live a similar life as I previously had, although I must also be mindful that as with any trauma, it affects us in ways beyond the phyisical and visible scars. I am now facing up to the fact that along with the impact of 6 months treatment, both my outlook and objectives have quite significantly changed.
Life is a series of hurdles and challenges and while this was quite a high hurdle, it has put some of my previous hurdles in perspective.
Continuing with the analogy, I now know that each time we come to a hurdle we can do three things: pause and panic, divert and change course or just jump over it. I feel that the way we deal with our challenges is less important as long as we reflect on the things that we also gain: An experience from which we can learn and improve, a sense of satisfaction from the achievement (whether it was a disaster averted or a problem solved), and finally the lens of perspective through which we can compare future problems.
4 weddings and a festival.
In an attempt to put the last 12 months in perspective a lot has happened and I am finding it difficult to recall. Whether it has been a conscious effort on my part and of those around me, I am not sure, but this year has been a rather ridiculous series of events and though life is never simple, even without my illness I think it would be difficult for this not to have had an impact on me.
Since May 2015, I’ve been to 5 stag do’s (in 5 different countries) and 6 weddings (in 3 different countries) I was best man at one which was at the same time in a different country to another which I had to miss. I’ve been to Glastonbury festival, several carnivals, beer festivals and nightclubs. My 2 younger brothers both announced they are to become fathers, I went back to work, was made redundant, became self employed and single. I have 3 more weddings to attend in the next few months, 2 more stag do’s and funeral.
I have met a lot of great people, made new friends, learned a lot and had some of the worse hangovers of my life (insignificant in the context of my chemo experience). This year has definitely been the craziest so far, but as we never know what is round the corner, my intention is to continue taking each day as it comes and working hard to make sure that I enjoy and make use of the time I have, and to convert challenges into experiences to share.
Apart from a couple of minor (probably an understatement but another story for another time) immune system related mishaps, I started my recovery in style. Although she eventually agreed, it took a bit of persuading to get my consultant to ‘allow’ me to go to Glastonbury Festival. The walking and long days were fun but hard work and I had to recruit my mates and Dad to help me with carrying my bags, but I’m glad I went. We in fact had an awesome time!
Glastonbury Festival
It has since become the beginning of a pretty ridiculous summer.
Ordinarily, I’m the type of person who maximises my life by minimising resting time. Having spent the last six months in the opposite state, life has bounced back in a big way. In fact I think one could argue I’m going a little too far.
Today has seen a couple of firsts: My first proper haircut, I bought my first bike (since I left school, with the intention to regain my fitness) and I’m currently writing this on a flight to Prague to partake in the first of two consecutive stag weekends. I have formally been offered a get out card by the stag if it ‘gets too much’ but I’m going to give it a good go, English style (the stag is Czech though so it’ll probably be a little less than the usual English affair- here’s hoping any way!)!
Flight to Prague
Most people have been surprised when I tell them I’m back to work full time, but I enjoy my job and it keeps my brain active, so it was an easier transition than it could have been.
I spent a lot of time thinking about my priorities during my time off and I still don’t know the ‘answer’ to the meaning of life, but I realised that we might as well enjoy the time we have and make the most of life. My diary is pretty much full from now until October, and though I’m spending a lot of that time catching up on missed partying, I’m conscious that I want to make a positive contribution to society so my next goal is to find an outlet for that ambition.
I’m back in the world of packaging now, so this blog will probably start to be filled with packaging related activities from now, but for those who have an interest in my illness or health related posts, I’ll probably reorganise those thoughts into a seperate or more coherent site or set of pages.
In the meantime, please feel free to get in touch if you have any ideas, thoughts or questions.
I read an article yesterday that dark chocolate is good for you. And not in the traditional sense of moderation. The ‘Queen Mary University London’ study suggests that flavanols found in Dark chocolate can ward off heart disease and alzheimer’s when eaten in vast quantities, which is lucky as this Easter I have amassed enough to keep me going for a couple of months.
After my blood transfusion a week last Wednesday, I’ve spent the time relaxing lazily. I’m still fighting with dizziness and light headedness which can be frustratingly disorientating like being permanently drunk. My brain is also not up to scratch, I’m still struggling with easy and beginner settings on Soduko and Chess, but expect I’ll catch up with myself soon.
My tongue has appeared to have gone through a full regeneration after the initial roughness and blisters, it went black and then I had a spell of fresh baby tongue and it seems to be back to normal now. My sense of taste still brings up some surprises but I think it’s starting to return to normal.
Black TongueBaby Tongue
It’s difficult to see for sure, but there’s no change in my hair meaning I didn’t lose it all, but it hasn’t started growing back yet. I have, however, noticed new growth on my face. My eyelashes have started to grow back (although my last remaining long eyelash fell out today!) and my beard seems to have started with adolescent and interestingly blond initial stage growth. I might give it a couple of weeks before I shave as it will be barely visible and only having shaved once in 3 months, I’m probably out of practice.
Eyelashes
So it’s been just over 100 days and I’m nearly there- I have two more outpatient infusions of Rituximab the first being on the 10th. I’m not sure how long they will last but I gather a couple of hours, so they shouldn’t affect me much.
Looking back through photos from the end of last year, I barely recognise myself, I’ve got used to the Nosferatu look I’m rocking. I also have about 3 stone of weight to re-gain to get back to normal. I know it’s going to be hard work, but I’m looking forward to my first jog round the lake!
As people ask how I am, I usually respond with ‘I feel fine.’ Although an automatic response to a casual question, it’s something I sometimes have to think hard about. I recently realised that I’m no longer sure what ‘fine’ feels like. With a dizzy disorientation, light headedness, lethargy, forgetfulness, tingling extremities and a dull haze around everything I do, I still feel much better than recently although I suppose health and state of mind are all relative.
Day 86-87 Chemotherapy
Although it has since turned out not to be the case, as far as I had expected, these were my last days on the ward- I had previously planned a card and some chocolates which with the help of Liz were hidden away in my belongings to pass to the nurses on my departure.
I had a final dose of Chemotherapy (Etoposide, ifosfamide and Mesna) on day 86 (Wednesday) Which was gruelling and annoying, but dampened by the thought of going home. The Thursday (day 87) was rounded off with a final intrathecal (IT) injection of methotrexate which was performed quickly and relatively painlessly (although not a procedure I’ll be missing)
On a few of the ‘IT’ injections administered I’ve experienced the pain or shocking numbness which can occur when the needle comes close to a nerve ending. It happened again this time although strangely the pain felt like someone pinched my leg which startled me. Otherwise the procedure went fairly smoothly.
Homeward Bound
I’m fairly used to the procedure now, and was careful not to jeopardise my release by giving anyone any excuse for delay (the organised registrar helpfully rescheduled his morning to start the procedure early). Even so, I was not ready for collection until around 17:30 and although we didn’t get home till 19:00, I was happy to have the option of refusing my final hospital dinner!
Still aching from the procedure I spent Friday and most of the weekend resting.
It was Liz’s birthday on Sunday and although her gift from me is an IOU, her family came up and I think she was more than happy to see them. I realised I hadn’t seen or spoke to them directly since Christmas, so it was good to catch up and experience a little friendly normality.
Days 91-94 Recovery
On Monday, it was back to the routine of the district nurse arriving to perform blood tests. I was a little apprehensive as I had decided not to take my Lenograstim over the weekend after a discussion with the nurse who agreed with my logic. The results came in fairly quickly and I had a call from the ward asking how I felt. I felt light headed and knew I was neutropenic but my neutrophils had dropped to 0.0 which is well below the normal safety threshold. I managed to negotiate with her as my platelets were still 28 (low but within danger levels provided I don’t cut myself) and I knew I had the back up of the injections.
My next test was Wednesday (yesterday) the call came in again, and this time they weren’t as lenient. My neutrophils had risen to 0.2 but my platelets were now 7 which normally would lead to random bleeding but Luckily my skin integrity has seemed to hold together fairly well apart from a few random pin pricks and bruising across my skin.
‘Petechiae’ pin pricks
Petechiae is the technical name for the pin pricks which are caused as blood vessels burst due to the shortness of platelets (also technically called ‘thrombocytes’ and ‘thrombocytopenia’ is the condition).
so I’m sat in hospital after another uncomfortably interrupted night waiting for a transfusion of blood and platelets. If the internal politics go in my favour I can go home shortly after although it’s difficult to argue and negotiate with doctors for whom safety is their primary concern.
After my return home, I could feel my body recovering with the usual ache of my bones. Otherwise, I could feel myself getting back on track.
I decided to break from my usual computer gaming and have a go at painting. I only managed to put down the first background layer and spent a day testing colours but it felt like a long overdue release – a hobby that work had replaced in recent years and something I’m glad to re-visit.
Willing my body better seemed to help as I received a call on Thursday afternoon after another good set of blood results.
I’m on day 4 and roughly half way into my R-IVAC course. I’d forgotten the amount of chemicals it involves and the daily routine has almost merged into a dreamy autopilot. So far, the treatments have lasted well into the night and having regular interruptions has affected my sleeping pattern. Although trying to keep awake and mobile, I’ve spent the last couple of days catching up on sleep.
My appetite is also deteriorating again as the sickness kicks in. The nurse started me on some new anti-sickness tablets today which seems to have helped, but I still have a dizzy headache.
I’m glad to say that the end is in sight and though I appreciate the work of the nurses and doctors, there are a lot of things about this experience that I will not be reminiscing over.
I’m looking forward to getting back to my painting.
It’s been over a week now since I left hospital, and apart from a few visits from friends, family and nurses, I’ve spent most of the time resting and playing.
After leaving the hospital, my body crashed and I spend the first I few days lying down and watching telly. With a spinning head and pains from my fingers and throughout my body, there wasn’t much more I could do other than sleep. Even watching the telly was uncomfortable at times and sleeping seemed to be a good way to hide the time away. The addition of diarrhoea was not a welcome entry to my symptom list.
On Tuesday (day 71) I had a brief meeting with the consultant who said that everything seemed to be going to plan. And that as soon as my blood had recovered I could go back into hospital for the final round. Being optimistic, I was hoping that it could start the following Monday (yesterday) and the doctor arranged for my blood results to be monitored in case my body bounced back quicker than she expected. Before I had time to call up and check my blood results yesterday afternoon, I had a call from the hospital asking me to come in ready to start treatment. Although I was not looking forward to another 10 days in hospital, a glimpse of the end put me in a good mood.
Just as I settle in to the routine of a 6am start, and hours of sitting around staring at the wall the doctor arrived. Apparently there had been a miscommunication of my results and although my neutrophil levels were up to 3.4 on Wednesday, they had dropped back to 0.2 this morning meaning that I’m back in neutropenia and that another onslaught of Chemo is dangerous at this point.
So having packed up my belongings again, I’m ready to return home to sit out my internal recovery.
I think this has been the biggest theme of my recovery so far, apart from the waiting, it seems that yo-yo-ing between home and hospital with barely hours to prepare and plan, let alone days has been quite a struggle for my mental stability. I desperately want to start planning the rest of my life, but I don’t even know where I’ll be in 3-5 days time let alone know how my body is going to respond at each stage.
unfortunately it seems that forecasting isn’t something that the NHS does very well.
On a lighter note
My new patterned finger nails seem to be coming on nicely. Luckily stripes coordinate well into my current wardrobe, although it would be better if they had more vibrant colours.
It’s been about 2 weeks now since my last round of treatment, apart from 2 days in hospital in the middle of my recovery period, this has been the longest stay at home since the end of November. It’s a strange feeling, and as the saying goes, the time has flown. I also realised that I haven’t driven once during that period, which for someone who used to clock quite a few miles is also a little strange, but I think I’ll pick it back up again!
Having mostly frittered the time on needless procrastinating, mindless TV (I even watched 2 whole episodes of Doctors!) and computer games, I feel I’ve wasted some of it. I’m sure most people (and definitely my consultant) would say that it’s important relaxation time, although it’s usually against my nature.
I was originally due to go back in to hospital on Sunday/Monday. In the seemingly haphazard, last minute approach that I probably wouldn’t accept from elsewhere, but have started to get used to; I had a call yesterday (Thursday) from the hospital saying that a bed had come available and they’d like to get cracking.
This terrible timing was a little frustrating for 3 reasons:
1: I intended to hand make Liz’s Valentines gift which I now had to rush in a day rather than span over a few days as originally planned.
2: I’d just received a second hand copy of Goldeneye for the wii in the post, and was looking forward to some nostalgic bond reenactment.
3: I was due several visits over the weekend from friends and family, which I now had either to cancel or relocate. (I did, however, cheekily combine my visit from Owen last night with a lift to the hospital for which I was grateful)
From the comments by the nurse, however, it sounds like my consultant had made a note on my file about the delays during my early phases of treatment and wanted me to keep on schedule. I am, on reflection, glad of this. A bit of frantic hassle now will lead to my treatment being completed quicker and more effectively meaning I can return back to a renewed sense of life.
So for now, I’m back in ward confinement on R-Codox-M starting with the R for Rituximab which has so far been running for about 2.5 hours with another half to go…
On Wednesday morning I was told that as I had no serious symptoms and a normal temperature, they were happy for me to go home after the transfusion. There were 3 bags of blood required including a flush between each and a process of admin (I think they have to order each as they need it). The first starting at 11:00 meant that I would be in hospital until about 20:00. Interestingly, although they know my blood type, they have to perform an additional “cross matching” exercise the same day. As well as blood group, they also refer to antibody levels.
My mum arrived just before 8pm and I went home fairly promptly; the nurses had organised my discharge notes and the pharmacist had delivered my bags of medicines by about 6 even though I was still plugged in- I think they must have needed the bed!
Back Home
Thursday morning I felt revitalised. I think during the gradual decline I hadn’t realised how much the anaemia/neutropenia/thrombocytopenia had affected me.
I wasn’t sure whether the nurse was due as she was previously booked in for Friday, but she arrived promptly at 10:30 to administer another shot of Lenograstim (some nurses refer to this as GCS which is granulocyte colony-stimulating) which has been extended for a further 10 days.
I knew I felt better as I decided to tidy the living room a little which has become cluttered with pharmaceuticals, dressings and solutions.
Pharmaceuticals
I spent the afternoon filtering through work e-mails which had filled my inbox. I also started working on some sketches for a whisky project that was pending although an email popped up Friday morning saying the customer didn’t have any budget so I decided not to complete or submit these.
For the rest of the weekend I’m looking forward to relaxing in the traditional sense, rather than through the necessity of not being able to do much else.
How do I Feel?
I generally feel well although waking up this morning was hard work. I can feel the effects of the Lenograstim again; it has the tendency of inducing bone and joint ache similar to how you feel when you have flu. I can also feel the back end of the last Chemotherapy session creeping over me; the tips of my fingers are very numb and tingly (a bit like pins and needles) I also have a similar sensation in the tip of my tongue. My ‘fissure’ seems to be subsiding and my recent bathroom visit was much more manageable. At it’s worst, I felt like I had been eating broken glass, so the knowledge that this was a temporary experience is a huge relief. Finally, and this is difficult to pin down to my treatment or whether it’s just tiredness, I have a kind of cloudy brain feeling. Although I feel awake, it’s as though I’m viewing the world through an obscure experimental movie like ‘Being John Malkovich.’ A temporary cloud hovering over all my senses I hope, but this feeling was much worse earlier on in my treatment.
I am repeating the R-Codox-M treatment (cycle 1-3) in a week’s time. I was told that the chemicals are accumulative. I’m hoping with apprehension that the symptoms aren’t accumulative too.
Before I start this post, I need to offer a health warning to family and friends: I’m ok, there’s nothing to worry about, I just had a bit of an emotional blip; but I think it’s important to be honest.
Day 39 first day home
I was looking forward to being home for 2 reasons: firstly a chance to relax again and regress back to childhood playing computer games while being waited on by Liz. Secondly there was a family gathering planned on the Saturday in aid of my Aunty’s birthday and it would be a convenient excuse to catch up with a bunch of relatives who I hadn’t seen for a while.
My blood counts, as noted previously, were on their way down, so the district nurse had been booked to arrive daily to administer the Lenograstim injection. On Friday the nurse arrived about 10 minutes before my Dad who kindly offered to make a cup of tea and finish the washing up. When she left, he foolishly asked if there was anything else he could do. Several journeys to the loft later it was time for him to go so I felt a little guilty that we hadn’t had time to catch up, but very grateful for the help.
otherwise the day was fairly un-eventful apart from completing a level of Halo!
The Party
Saturday was mostly spent sleeping and relaxing in preparation, I was feeling fairly well in myself but a little weak so took it carefully walking to and from the car and sloped off for a bit of a sleep on arrival. The party was good, nicely laid out with a good spread of food, music which the aunties could dance to and I managed to catch up with most of my relatives. My mum’s cousin came over with his wife who had been through a similar experience 4 years previous. They offered support and said that there’s a light at the end of the tunnel, a sentiment which was appreciated.
I generally follow a more scientific than theological ideology, but the words “I have been praying for you” spoken by a couple of relatives was also greatly appreciated, especially knowing that it was both genuine and heartfelt.
Even though I spent the time sitting down, I realised how tired I was when I stood up. To those who didn’t know me, I must have seemed like a drunken old man stumbling to bed early, but I felt a sense of achievement all the same.
The Panic
During Sunday, I became aware that I had taken a couple of risks. I like to think of myself as a ‘pragma-realist’ I like to form decisions and opinions when I have all the information, although I understand that sometimes ‘all’ the information is un-available or difficult to obtain.
The risks therefore were as follows:
1: I hadn’t had a blood test since Thursday and the next was due Monday (I was aware of this on discharge, but decided not to press the point in case of jeopardising my release) this meant it was difficult to know how low my blood levels were.
2: I went to a party full of people in a public place. (I had discussed this with the doctor who said this might be ok, but again hadn’t been explicit about it with the nurse or doctors on the day of discharge in case it would jeopardise my chances of being able to go)
In the afternoon, I had started to feel quite weak and feeble so went to bed early. As soon as I started to drift off, my mind started wondering. Recalling a comment the doctor had made on Thursday; “I can feel the lump here, it’s much smaller than before,” began the start of my panic. Until this point, I had thought it had gone completely and suddenly could feel it again myself. On top of this, my skin was feeling really cold to the touch and I was sweating which is usually a late symptom and should have stopped by now. To top this off and noting that I’ve experienced every type, size, shape and colour of fluid and solid discharge during my treatment I had uncomfortable bowel passing which was quite bloody and I had strange blotches (like red freckles) appearing on my skin. Adding all these together I started for the first time to think of the ‘what ifs.’
Red Freckles
The hardest thing to console myself over was not all the problems I’ve had or things I should have done, it was all the things I hadn’t yet done. As much as I’m comfortable with the experiences I’ve had so far and am confident that I have learned a great deal during my relatively short life, I feel I have a lot more to achieve and am capable of offering more. Obviously no-one knows what’s round the corner, but I would be deeply unhappy if I had to leave without having made a positive contribution to society, even in the form of offspring. With all these spinning thoughts and imagined conversations with friends, family and colleagues flashing through my mind I started to well up. As a pragmatic bloke the first tear dropping down my cheek is always a little embarrassing, but it happens; I’m not sure why we feel the need to instantly quell it, but perhaps that’s our way of coping. I managed to stop the tears before waking Liz, but felt a little refreshed when I woke up. Perhaps it was just a case of the Sunday blues.
Return to hospital
On Monday the nurse came round to take blood tests and flush my line. I got up late as I was extremely tired, so I asked Liz to bring her (and all the kit) upstairs. I spent most of the day asleep although managed to make it downstairs in the afternoon. Mum had the day off work so cooked lunch for me and Liz which was nice. I watched a bit of telly and sloped back off to bed. Nervous of the bleeding I decided To avoid going to the toilet before bed.
Tuesday morning, I had to go to the toilet. By this time, based on the discomfort and a bit of help from the NHS website, I was pretty sure it was heamorrhoids. I decided to call the hospital to see the best course of action. The nurse said that my blood counts weren’t back yet but that I should book in with the GP to get them checked out. She prescribed me cream over the phone, I was tempted to offer Skype but decided against it! A couple of hours later at about 16:30 I had a call from the hospital saying we need you to come in via A&E the blood results were as follows.
Heamoglobin – 76
White blood count – 0.2
Platelets – 10
Neutrophils – 0.0
Platelet Transfusion
I am now back in hospital receiving a bag of platelets (low count explaining the heamorrhoids, which the doctor here has actually said is an internal tear or fissure and not piles after all) I have a further 2 bags of blood to follow and the nurses were surprised I managed to get away without further or worse symptoms! I’m hoping they’ll send me home once I’ve had the transfusion, but recent experience tells me that’s anyone’s guess!
Aaarrggggh, well that’s how I’d planned to start this post, but this morning things have changed. I was initially due to have my intrathecal injection on Monday, but it was rescheduled to Tuesday. By Wednesday at 15:30 having still had no news, I was starting to get a little frustrated. More specifically due to the fact that I’d been told I could go home for a couple of days while my blood counts are still high. Every day after chemo, your blood counts drop so by Wednesday I was starting to feel like I wouldn’t be able to go home at all!
The procedure
The other hurdle to my being fit for discharge was illness and specifically having a headache after my intrathecal (IT) chemo. I had been told that they would use a thinner needle this time and allow me to lie down for longer afterwards (4 hours) in order to minimise the risk of a returning headache. During the procedure, the doctor struggled to find the correct location. She hit the bone at least twice (which was quite uncomfortable) and she also reportedly bent a needle.
As the anaesthetic started to wear off, my back started to stiffen up and was quite painful. I was a little nervous of this triggering the headaches. On going to the bathroom to brush my teeth, I became a little dizzy and had to dive back on the bed to sleep for a bit.
The student nurse brought round my blood results for me which didn’t make great reading and I was a little concerned about my prospects.
Day of release
This morning, during my shower break, I did a couple of stretches and wore myself out but apart from a mild dull ache, my headache has subsided. When the doctor reviewed my blood results they’d actually come up a little thanks to the lenograstim I’d had the night before.
I thought I’d ask for a bit more detail about the results for reference:
Haemoglobin (HB) these are a type of white blood cell.
White blood count (WBC) this is a general count of cells.
Platelets (Plt) these are blood cells which help clotting.
Neutrophils (Neut) making 70-80% of white blood cells they are a good indicator of a healthy immune system.
Here are the ‘normal’ and ‘threshold’ ranges for each noting that everyone is different and the doctor would normally find out a baseline normal level for the patient along with other contributing health factors to help determine what the safe levels should be.
Haemoglobin (HB)
normal: 135-180, threshold: 70-90 depending on age and health.
My counts: 28th – 96, 29th – 97
The doctor said that they don’t pay much attention to these levels.
White Blood Counts (WBC)
normal: 4-11, threshold: below 4 is when they start to be concerned, but depending on health some people can tolerate lower levels.
My counts: 28th – 1.2, 29th – 2.5
Platelets (Plt)
normal: 150-400, threshold: 10-20 or under 100
My counts: 28th – 134, 29th – 102
I found this quite interesting; I noticed from the above that you have a lot more platelets than you need for daily life, but the doctor said you need high amounts if you’re having surgery or are in an accident. For example a count of between 10-20 would mean you start getting nose bleeds and bruising, below 100 you’d struggle to heal from a cut on the head and you need 200 or more to survive surgery. They tend to apply a transfusion if these levels get towards the 20s.
Neutraphils (Neut)
normal: 1.9-7.5, threshold: 0.5 (neutropenia)
My counts: 28th – 1.0, 29th – 2.3
I’m currently anaemic and have a reduced immune system, but I’m within safe thresholds for going home. I will also have another Lenograstim injection before I leave which will help give my bone marrow a boost.
robinbtaylor 