Is it Possible to be Creative and Successful?

I feel like I’ve spent most my life trying to prove I’m not a robot.

When I was growing up, my Dad always told me that it’s important to have original thought and that true creativity is about pushing boundaries and creating new ideas.

He taught me to see things as they are (rather than how we imagined them to be) and then find ways to reinterpret and communicate this as an idea.

I was inclined to rebel against his lifestyle and wanted a more orderly existence.
I chose design as a way to express my creativity within bounds of solving problems to build a career, rather than risk destroying a hobby for the sake of earning money.

I still find I am constantly trying to prove to myself (and unconsciously to him) that I am an individual and not just another robot like everyone else.

There are plenty of examples in history of world famous creative types who died penniless while their art appears frequently in renowned museums and concert halls centuries later (Van Gogh, Toulouse-Lautrec, Mozart, Rembrandt, Vermeer – Even Whitney Houston according to the internet!).

With the advent of ‘social’ media, the communication age and advances of technology these days, we seem to be bombarded by contrasting and contradicting information.

It seems to me that every piece of advice for being successful says that we must do the following things:

Automate
Systematise
Create repeatable actions
Use algorithms
Adopt AI
… and so on

While I know that success is subjective, and so is creativity – it feels like there is a trade off between creativity and following a repeatable process.

On one hand I’m trying to prove I’m not a robot, while at the same time everyone is yelling at me to be more robot.

by the way; does anyone know if I’m supposed to include the pole which the traffic light is attached to??

… Creative summary

Is it possible to be a creative free thinker who is successful?

Or should I just accept that a good compromise is 80% robot and 20% creative.

I’d love to hear the opinions of some of my fellow creative friends…

Message below

Why is Packaging Important?

December 21, 2012December 23, 2012 robinbtaylor design, Packaging, Packaging Design, Tips Packaging Design

I recently read a book (Ready Player One) in which the lead character became absorbed into a matrix style online gaming world which he felt was better than the “real” world around him. A world of warcraft style adventure ensued as they battled to win a prize to inherit their digital world from its inventor after his death.

Even in this fantasy world of a digital tomorrow, the character had to order his food and hardware to be delivered or collected from an outlet or storage.

I am normally a strong advocate for independent retail and the high street. It pains me to admit, however, that this year I purchased about 90% of christmas presents online. (though 2 gifts haven’t arrived in time which strengthens my argument)

This year (2012) online shopping is expected to reach nearly 10% of all retail spending in the UK and is growing quickly with almost two thirds of adults reported to make online purchases. [www.huffintonpost.co.uk, www.telegraph.co.uk ]

Even in the world of online, we still need Things and things need packaging.

Apart from the career it has developed, to me packaging is important for several reasons:

Product protection.

Cucumbers last three times as long on the shelf when shrink wrapped, which increases shelf life and therefore reduces food waste.
Good glassware packaging can reduce transit damage to almost 0%

Storage

For a retailer, liquids and grain would be much more expensive to distribute without convenient packaging.
Also as a method of preserving. Tins were developed between 1810 and 1813 to improve shelf life – It’s hard to imagine life without this type of packaging.

Communication.

For a brand owner, packaging can communicate a product benefits
For the consumer it can help make purchase decisions.
Packaging is also a great way to communicate environmental or ethical status e.g. ‘fair trade’ or ‘recyclable’

Product Extension

A container can be a way for the consumer to identify and interact with the product for example a shampoo bottle.
Packaging can also become a product in itself for example gift packaging where a collector will keep the packaging both for storage and as a keepsake.

By carefully choosing the correct materials and production methods, not only can we reduce cost and environmental impact of the packaging, we can also reduce waste (e.g. food or perishable goods) improve consumer choice and increase the value of the finished product.

The type of project I enjoy working on the most is gift packaging. The sense of satisfaction when creating a design which will be kept and cherished, rather than disposed of, offers a much greater sense of reward.

Cohesive Packaging Design

November 12, 2012November 12, 2012 robinbtaylor design, Packaging, Packaging Design, Print Techniques, Tips packaging, Packaging Design

These days, you don’t have to look far to find a blog about packaging design. There seem to be hundreds of people from various walks of life giving their top tips about how to create great packaging. Living in the world of 2D, it is easy to forget the stuff that makes the packaging. Many designers aren’t aware of the constraints or capabilities in manufacturing and find it difficult to look beyond the on-screen graphical representation.

Packaging is a tangible thing which you can pick up, hold and open. I wanted to talk about this; the assembled bones and flesh that make up the creative design in the real world. It’s important that all the elements of a design are considered together. The way they interact, look and feel is as important as the pictures and type placed upon them. I have always believed that it is the little details that make a big difference. A minor change can really affect the overall feel of the end result. If, when developing an idea, the designer (or project manager) considers all the following elements, the end result will be a truly cohesive packaging design:

but before I start…

…I realised, while writing, that each element could independently become a huge topic, so over the coming weeks I will start to expand on these component parts along with several sub-headings which have evolved in my notes. In the meantime, however, I will try to summarize as a pre-cursor.

Shape or Structure

The shape is important for many reasons; identification, style, size, mechanics of storage and display. The shape can also determine the ease at which the product is dispensed. Structure for me is the method by which the shape is constructed. Whether it’s the position of a seam line or method of opening, a simple change can be the difference between nice clean lines or low-cost alternative.

Materials

From cost to weight ratio, strength and security through to nice ‘touchy feeliness,’ the substrate plays a huge part in the final result. Carefully choosing materials which complement the design in a consistent way can really help the final message. In dealing with large global projects, the availability and environmental impact of the material is also a really important consideration. Poorly managed choices can adversely affect brand consistency, corporate image and cost.

Print Method

Whether a single colour flexo identity stamp or a complex gravure security label, the method by which we apply our text and graphics (although somewhat determined by material and volume) can help ensure our artwork is presented as intended. Rather than making a compromise because of supply constraints, by understanding the benefits and performance of each technique, we can apply our artwork both effectively and efficiently.

Finishes & Techniques

After print comes ‘finishing.’ The generic term for what might be described as the final enhancement. From in-tool embossing to glitter varnish, these enchanting augmentations can easily lead to a garish tackiness if badly executed. With careful consideration, however, they can also be the little detail that you can’t quite put your finger on; an indefinable quality.

Present Packaging for Puerile Pastime

November 2, 2012November 2, 2012 robinbtaylor Crafts, design, gifts, Packaging, Packaging Design Gift Packaging

We may not behave as such, but my brothers and I are technically adult. Our tastes and projections of one-anothers’ wants have accordingly matured in a similarly mundane manner.

During our younger years, the unknowing exited surprise of an unwrapping experience was difficult to contain. It has slowly become the centerpiece to our nostalgic (and somewhat exaggerated) storytelling.

As we have grown older, through a combination of inherent intuition and fear of disappointment, we tend towards the safer “is-there-anything-you-need” options.

One recent Christmas, my youngest sibling (perhaps slightly drunkenly) proclaimed “It’s not the same any more, I’m not sure I can get excited about clothes.” he continued to remark that the presents we acquire as adults (although gratefully received) cannot be ‘played with’ or enjoyed as the toys or games we looked forward to as children.

The problem therefore is this:

How can we be sure that the gift is useful and not superfluous while;
a) ensuring that the opening experience is exciting and
b) satisfying our curiously competitive creative nature?

The solution follows:

10 Things you need to know about packaging design

October 28, 2012November 1, 2012 robinbtaylor Packaging, Packaging Design, Tips Design, packaging

In its overuse, most people dislike the phrase “thinking outside the box” and there are countless packaging companies using similarly un-inventive tag-lines. You don’t have to search too far to find a blog by a branding or design agency discussing the merits of “brand communication” and “consumer engagement”. Today, however, I wanted to pick out what I feel to be the important aspects of packaging design and how they relate to the real world of packaging manufacture…

In plain terms, here are my packaging design top 10 dos:

1) Think about the contents.

Whatever anyone tells you, and however “loose” the creative brief, the MOST important thing about a piece of packaging is what goes in it. Packaging in its most basic state is created to contain something, so in order to consider the design, we really need to understand the product which it has to contain. The contents will therefore determine for us, at least, the minimum size, weight and shape, and in turn the method of opening.

2) Understand the function.

In 1896 Louis Sullivan posed the term “form follows function” which became a maxim for the modernist movement. This idea is therefore not a new one, but it is very important. Although there are some great examples of clever and unique packaging inventions, just creating something that’s different is not in my mind good enough. In order to create truly great packaging we really need to justify our design by relating the shape, materials and all the other elements, firstly to the content, and secondly the journey through which the product will travel. If we can answer the question, what function does this packaging need to serve (whether it’s strength, ease of use or so on) we can then create a truly meaningful design.

3) Be mindful of the supply chain.

A great example of why the supply chain is important is the success of shelf ready packaging (SRP) over recent years. In the world of the supermarket, product would be delivered to a distributer in a box, then shipped to the store in a box (sometimes a smaller one) then removed from the box, and placed onto the shelf loose or on another display unit or box. So some clever people decided that by designing the outer packaging in a better way, you could do 3 things – reduce the time to shelf in store, reduce the amount of wasted packaging, and improve and enhance the brand message during the journey of the product, while giving better protection. If we think about the way the product is stored and transported, we can help to minimise the impact of our design on the wider world.

4) Establish the brand message.

Once we’ve considered the product and its function, we should design our packaging in a way which helps to enhance the message which the brand intends to portray. By selectively choosing the materials, shape and images we can help to communicate the brand to the buyer both consciously and subconsciously. Every element of design from quality and texture through to the strength and complexity can augment our idea.

5) Add an element of security and safety.

Whether attempting to subvert thieves in store, or minimising the risk of loss or damage in the post, if we can add a security feature to our packaging, we will help to improve its market effectiveness. There are many forms of in-store protection in the forms of labels tags and cases, but unfortunately many of these are uncompromising or ugly. By adding an element of “benefit denial” using intelligent materials or design, not only can we improve the look and feel of our product, we can enhance the effectiveness of the packaging as a product in its own right.

6) Research the materials and techniques.

Part of my draw to the packaging industry is the range and speed at which modern technologies are evolving. Even in my relatively short career I have seen some massive shifts in techniques and materials. I could in fact write a new blog about this subject in itself. By really understanding the tools available to us, whether it’s a clever printing technique or a new material technology, we can start to enhance our design in a unique way which works hand in hand with the processes available to us, rather than being limited by our own knowledge.

7) Design the opening experience.

This is my favourite bit of design. It may be true that success isn’t really measured beyond the shelf, but by getting in the head of the end-user and thinking about how they feel as they open the box, we can enhance our product by taking our customer through an experience which is easy and fun rather than annoying and frustrating. You don’t have to search far on twitter to find someone talking about a clamshell pack they couldn’t get into or a product that disappointed them on arrival due to a badly packaged state. If we can improve what I like to call the opening experience, we can begin to convert the sometimes negative image of packaging.

8) Be creative.

Ultimately, what we’re really trying to do here is to come up with something unique that people are going to talk about, or be interested in. If it’s a product on a shelf or delivered via online shopping, we need to design our packaging with words like impact and outstanding in the forefront of our minds. The world is becoming busier and louder, so it’s our job to help our design stand out.

9) Realize the Product/Brand extension.

Marketers call packaging the “silent salesman.” In many cases, for example toothpaste, the packaging is or has become the product. If we think of the packaging as an extension of its contents, we can help present it in a coherent way. Not only can we make a dull product desirable, we can engage the consumer by expanding the uses or features of the product by delivering it in clever ways or combining with other products to create new uses. Some brands even join forces to enhance one another’s image – for example, Jean Paul Gaultier and Coca-Cola (both of whom already have iconic packaging) have merged their brands for this promotion to create something unique and interesting.

10) Don’t forget to Develop.

Just because you’ve created a great idea now, doesn’t mean it will always be great. In order for a design to be relevant and up to date, it should continue to evolve. By considering this at the outset, we can even program ideas into our design so that we can add seasonal or promotional elements to help enhance the message in the future.

Why I like making Pop-ups

October 7, 2012October 12, 2012 robinbtaylor design, Packaging Design, Tips

I love my job, but It has to be said that having to explain what it is that I do to everyone I meet, can become tedious.

“You design boxes?… But aren’t they all square?”

Although technically a ‘square’ (sided) box is actually uncommon, I have to concede that the unrelenting parallelogram has actually become the sequitur of my design career. To begin with, I would explain that it really is more interesting than it sounds. I would then proceed by embellishing in brand names and products that I worked on. Nowadays, I just agree.

I first encountered pop-ups a couple of years into my career; someone showed me a credit card holder and asked if I could replicate something similar. The design was fairly simple: a folder with a slot and a panel which lifted the card when you opened it. This lead me to the realisation that I could add value to the design by presenting the product in a different way. From here on, the packaging became an enhancement to the product rather than purely a method of enclosure.

The packaging company I worked for understandably required me to design in a way which suited their mechanical production lines. This meant that there was a limit to the complexity of the design I could create, but this only heightened the appeal of my self induced challenge.

I spent the following months trying to find different ways to display the product while creating a design that could be automated. I dissected pop-up books, browsed through guides and instructions, copied and read up on some remarkable designers until I had visualised and replicated all of the main constituents of typical pop-up construction.

My first design took a while to migrate into a real product (I designed it with a view to creating the greatest movement with minimum assembly) and I was immensely proud when it was used in production.

Each time since where the opportunity has arisen, my childlike enthusiasm has become difficult to contain. I will happily stay up all night cutting and sticking until the final iteration is successful.

From “Heavy Trash- I want Oblivion” Video – check it out here

The challenge with pop-up design is turning a flat piece of artwork into a 3D moving scene. For products where I’ve been able to work directly with the illustrator or key artwork, this process is much more fluid. But whether I’ve been involved at the start or fixing a design problem later, the consummation of adding value and creating something from the original shape is greatly satisfying.

Fertility – it affects men too!

July 13, 2016February 13, 2017 robinbtaylor Cancer, Diagnosis and symptoms, Health chemotherapy, Fertility, male cancer, male fertility, men's health, sperm banking

As men, we like to discuss crude topics and the modern prerequisite to masculinity includes bravado and confidence. When it comes to our personal health, however, we seem to clam up and find these things difficult to talk about.

My treatment started in quite an abrupt way, so I didn’t really have a lot of time to process my thoughts about fertility and the affect that the treatment would have on my future, but I’ve had a good 18 months to reflect now and thought I’d share my thoughts.

On my first day in hospital, I had been given my diagnosis, told that I would be spending Christmas locked in an isolation room hooked up to a drip, and that I probably wouldn’t be going back to work for 3-6 months. As my consultant was just about to leave me to my thoughts, she said… “oh one other thing, you didn’t want kids did you?” Though I understand that statistically most patients (being over 50) have been through that process or have made a decision not to by this point – as a relatively young 34 year old without children, it was (and still is) quite important to me that I could continue my legacy at some point in the not too distant future. And being told that there was an 80-90% chance that post-chemo the chances of fertility were limited, I wanted to know what my options were. In fact, given more time, I probably would have opted for a delay to chemo at the time.

In context – it was the 22nd of December, all of the key departments would soon be breaking up for Christmas and they were desperate to get me on to chemotherapy before it was too late. With a bit of pleading and ringing around by the clinical staff, they managed to arrange an appointment for me at the Birmingham Women’s hospital that afternoon as an ’emergency’ patient.

By this point I had a lot on my mind. I’m not the most comfortable in these situations at the best of times, but in addition to the pain and discomfort I was already feeling – added to the fact that the only person available to take me was my Mum (there were no hospital transport options due to the holiday), I started to feel rather uncomfortable about the whole situation.

Banking on myself

So within a few hours, I was hobbling into the Women’s hospital asking to bank some of my potential self for future use.

I spent some time filling in forms and answering complex philosophical and ethical questions regarding, for example, the event of my having children posthumously and whether they would be allowed to know their genetic origin. Next I was ushered into a room which was furnished and decorated with a strange clinical, seedy kitchen aesthetic with sparkly counters and a red faux-leather sofa. There was a red folder with wipe clean pages marked “adult material” hidden under the counter which judging by the depicted topiary and costumes hadn’t been updated since 1988. Not having participated in any related activity for several months, the challenge facing me seemed like a mountain to climb, but luckily I had 3G reception. With a bit of imagination and a pending sense of urgency and self-pity, I managed to fulfil my requirement.

The good news is that although I only had a usable count of 50%, the count was quite high so they were able to bank a sufficient quantity of the little fellows. I’m quite apprehensive about getting rechecked (incidentally this Friday) as the prospect of having a reduced usefulness in case of an extreme populational crisis weighs rather heavily. Having a chance of procreation in the non-traditional sense is at least comforting.

The Male Fertility Elephant

The NHS choices website has a ‘fertility check -health tool’ which is aimed at women.
The local place to get tested for me is the ‘women’s hospital’
I’ve been to two talks about fertility for cancer patients and in both cases, the presenter was surprised to see any let alone a small number of men and said “I’m afraid my slides are really aimed at women, but if you do have any questions, please ask and I’ll try and help.” I also spoke to a lady who had been lobbying the government about better choices for young people having to deal with fertility issues as a result of chemo and when I said that I understand as I went through a similar situation, she said “oh, I’d never really thought that it could affect men too!”

With this experience, I have wondered whether men are just too shy or proud to ask and hence there is a lack of information- creating a kind of self-perpetuating situation. Perhaps it is such a small issue that support for men doesn’t warrant the resource. For me, however, it seems like a big issue so I wanted to talk about the subject and express my concerns herein. I’m not sure this will do any good, or whether anyone will find this useful – but I’d love to hear about the experience of others and it would be great to identify and break the barriers to discussion regarding this and also similar male health topics.

12 Months on.

May 7, 2016May 7, 2016 robinbtaylor Chemotherapy, Health, Lymphoma

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.

Summer Recovery

July 23, 2015July 24, 2015 robinbtaylor Cancer, Chemotherapy, Diagnosis and symptoms, Health, Leukaemia, Lymphoma burkitts lymphoma, cancer, health, leukemia, Recovery

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!

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!)!

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.

Robin,

Day 95-105 recovery

April 6, 2015 robinbtaylor Cancer, Chemotherapy, Diagnosis and symptoms, Health, Leukaemia, Lymphoma chemotherapy, eyelashes, hair loss, symptoms, tongue

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.

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.

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!

Day 86-94 Chemotherapy

March 26, 2015 robinbtaylor Cancer, Chemotherapy, Diagnosis and symptoms, Health, Leukaemia, Lymphoma Petechiae, platelets, thrombocytopenia

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’ 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.

Day 79-85 Chemo

March 17, 2015 robinbtaylor Cancer, Chemotherapy, Diagnosis and symptoms, Health, Leukaemia, Lymphoma chemotherapy, R-IVAC, Recovery

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.

Day 66-78 recovery

March 10, 2015March 10, 2015 robinbtaylor Cancer, Chemotherapy, Diagnosis and symptoms, Health, Leukaemia, Lymphoma cancer, chemotherapy, Recovery, Stripy nails

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.

Day 58-65 Chemotherapy

February 25, 2015February 25, 2015 robinbtaylor Cancer, Chemotherapy, Diagnosis and symptoms, Health, Leukaemia chemotherapy symptoms, methotrexate, vincristine

Last Wednesday I was expecting my second intrathecal injection. There was a delay with the doctor coming round, and by about 14:30 I was resigned to the fact it wasn’t going to happen (noting that the doctors finish at 17:00). It turns out there was a difference in opinion between the new registrar (who by the way, seems to be on the ball; a refreshing enhancement to the ward) and the doctor who would perform the procedure. The registrar felt that I was best off getting it out of the way so I could go home for a couple of days to be back on Saturday, while the doctor felt that I needed a break between the injections in case of an adverse reaction. Bearing in mind that I didn’t really want to spend another whole week in hospital, I quietly sided with the registrar. The consultant came down to decide; the three of them came in to my room having audibly discussed this outside and told me that they had decided that I could go home this evening. Conveniently my dad had just arrived while this was going on, so a couple of hours’ admin and we were travelling back home. I thought it was a little strange that they could just cancel this procedure, but they need beds and I wasn’t going to argue.

Chemotherapy Outpatient style

Having spent Thursday at home, and feeling a little refreshed, on the Friday I was due a short course of Vincristine. The dose was just a 10 minute infusion so they decided it would be ‘easier’ if I had this as an outpatient. It was a little strange to be sat on a ward that apart from the lack of beds and curtains, seemed familiar. A chair, side table with water jug, drug trolley, drip stand with pump and an HCA walking round performing ‘OBS’

A cup of tea and paperwork later, we were done. The 10 minute infusion took about 3 hours out of my dad’s day, but I think he feels like he’s making up for lost time and said he’s glad to help.

Return to hospital

with all the travelling, packing and unpacking, it didn’t feel like I had much time at home, but I managed to delay my return visit till the evening with a minor fib about having to arrange transport. This meant that some of the visits by friends and family which had been planned on Saturday could be performed in the comfort of home rather than in the depressing side room without Mariokart.

Saturday afternoon was spent preparing for a day of 24hours Methotrexate on Sunday followed by a 3 hour course of Rituximab. The course started on time at 4am with some pre-meds including antihistamine and a drug to protect my bladder. This was followed by saline solution which preceded the methotrexate by a few hours and continues as I write this until my body has expunged the remaining poison.

I had almost forgotten about the Groundhog Day routine that ensues with this treatment: beep beep, wake up, unplug the pumps and stumble with the stand into the bathroom, urinate into a jug, return to bed and press the call bell, lights on, urine tested, bag mixed and refitted to the pump, try and get some more sleep. This happens every 2 hours for about 4-6 days.

I realised I was feeling really weak yesterday and my blood results confirmed neutropenia. I had a couple of blood transfusions which seemed to help and I feel a little more alive today.

How do I feel?

With the obvious lack of sleep I’m shattered. I’m a little disorientated and dizzy; I’m not sure whether this is due to tiredness or the treatment, but probably a little of each. As expected, the main side effect from the methotrexate is that it affects one’s gastrointestinal tract meaning blisters and bleeding from my mouth all the way down to out.

I’m still using a multitude of mouthwashes which help, along with tablets to aid bowel movements, but eating and brushing my teeth hurts. I have constant pains in my abdomen similar to wind or stomach cramps along with horrible shooting pains which make me writhe around a little, but I’m getting used to this now and I know it will ease off in a few days.

A new pain, which I don’t remember from before is intense stinging in my fingers. I’ve had tingling fingers pretty consistently, but yesterday this got a lot worse to the point that I couldn’t peel an orange without a knife and I was a little concerned about being able to play the violin again. The registrar comforted me slightly by saying that this was due to the vincristine and is fairly well documented, although It might take 6 months to dissipate, it would go eventually and he increased my dose of amytriptiline in order to help minimise the sensation.

Day 54-57 Chemotherapy

February 17, 2015 robinbtaylor Cancer, Chemotherapy, Health, Leukaemia chemotherapy, Sleeping in hospital

I’ve been back on it for a few days, and am starting to lose track/energy; Rituximab, Vincristine, Doxorubicin, 3 days of Cyclophosphamide and yesterday I had another intrathecal injection of Cytarabine. Gladly the procedure of ‘very thin needle’ and ‘4 hours lying on my back’ seems to work ok as I have another booked in for tomorrow afternoon. I feel a little light headed, tired and my bones ache, but I feel a great deal better than I did during cycle one.

I can also feel the peripheral effects of my chemo coming through; my skin is dry, mouth claggy and my knuckles are turning brown. The heady dizziness is disorientating, and I’ve spent most of the last few days staring at newspaper supplements and the wall or mindlessly watching TV shows that probably wouldn’t have much impact if I was fully coherent. After tomorrow I have a few days break in order to prepare me for 24hr Methotrexate infusion. I didn’t enjoy this last time, so I’m planning to get up and about as much as possible and try and shake myself back to normality so that I have the best chance of getting through it.

Trying to sleep

The room is hot so I have the window slightly ajar. The alternative is the fan, but as sleek as it looks, it’s noisier than the dark outside. My head is still throbbing a little as I drag myself under the scratchy white sheets. I no longer have the energy to remove my pyjamas as I drop my head into the pillow. I hold the button slowly reclining the bed into its familiar prone position. My top crinkles beneath me which I know I’ll regret in the morning, but I can’t pull myself around too much without tangling the Hickman line in my chest. It has become a familiar appendage, hanging against my skin. I rarely notice it until I lie on the clamps which dig unforgivingly into my flesh. I reach to the call button and switch off the light.

Nuzzling my head into the corner between the pillow and the side panel, I stare at the warm LED glow shimmering across the mechanical grey stucco plastic. Finally I close my eyes. The darkness is noisy.

I can feel the throbbing of my joints as my blood pulses in syncopation around my body. The repetitive flick of the second hand on the wall is suddenly overwhelmed as the deep rumble of a car drives past the window. At the same time I hear a click as the gurgling rumble of the fridge kicks in; an appliance on its last legs. Clinks and rattles join in from outside as a trolley passes along the corridor. I concentrate on the colours behind my eyelids.

The disorientation of dark blotchy reds merge with purples and yellows. My mind lifts as I feel a cold chill through my brain. I can feel my head spinning. I feel weightless and can no longer orient myself against the sounds from outside. I can feel my whole body fixed in position spinning around the room. The dizziness makes me nauseous, but I let it pass as I imagine myself spinning and diving uncontrollably, bouncing off the walls. The exhilaration increases my pulse momentarily as I finally drift off to sleep.