The great ingrowing toenails saga!

It was probably in the middle of August when I first noticed that both of my big toes were a bit sore. As they gradually got worse, I started to apply a bit of Sudocrem on them, in the hope that it would help speed-up the healing process. In the weeks that followed, there was probably the occasional set back, when I stubbed one of my big toes or someone stood on one, but generally speaking they seemed to be slowly but surely heading in the right direction. That is, of course, until one day in the middle of October when, as described in an earlier post, I was admitted into hospital with an infection. The infection had likely found its way into my bloodstream via breaks in the skin on my big toes, as they looked pretty swollen and were definitely throbbing!

The Hospital

As you may remember, I spent four days in my local hospital, during which I received an IV antibiotic (Tazocin), before being discharged on a seven day course of an oral antibiotic (Flucloxacillin), with the plan of having a check-up at the hospital in Sheffield a week later to see how I was getting on. At that check-up the doctor recommended that I arranged to see a podiatrist at my local health centre, so that a specialist could suggest what was the best way forward. However, it turned out that I needed to see my G.P., in order to get a referral to see a podiatrist, so I made an appointment.

The G.P.

When I saw my G.P., a week later on the 5th of November (day +278), I was given another seven day course of the same oral antibiotic, as well as a topical antibiotic (Mupirocin), and referred to see a podiatrist, as my big toes were looking infected again; Fortunately, the infection was only local this time, hence I mostly felt fine. It was really only because of my medical history that the G.P. referred me to see a podiatrist, and that I got an appointment relatively quickly, i.e. the 14th of November (day +287).

I actually spoke to my G.P. again a couple of days prior to the podiatrist appointment, as my big toes still looked infected, hence I needed some more of the oral antibiotic. Whilst picking-up my prescription from my local health centre, I went to see a nurse there too, so that a swab could be taken to send off to the microbiology department at a nearby hospital, in order to identify the specific infection that I had; Determining the specific infection helps with choosing the best antibiotic(s) to use to treat it.

The Podiatrist

After I'd explained my medical history, in particular my immuno-suppressed status, and shown my big toes to the podiatrist, we had a discussion about what was the best way forward. The podiatrist explained that my toenails were not so much ingrowing as slightly too wide - A common issue. In other words, the infection was resulting in my big toes becoming quite swollen, and that was making the toenails look ingrowing.

Essentially, I had two main options available to me: Continue with the antibiotics to clear-up the infection, and then either hope that they healed by themselves, or have some form of toenail surgery to help them heal. The toenail surgery would involve either removing the toenails, or just the edge(s) of the toenails so that they weren't quite so wide - An acid would then be used to prevent whatever was removed from ever growing back. Whilst the podiatrist seemed to be leaning towards some form of toenail surgery, it was made clear that the toenail surgery is unsuccessful in a small percentage of cases, and that whatever option I chose, there was a risk of my big toes becoming infected again; i.e. there was no right or wrong option really.

My immuno-suppressed status meant that any form of toenail surgery would need to be done by a surgeon in a hospital theatre, in order to minimise the risk of infection; Normally, the procedure would be done by the podiatrist at the local health centre. The hospital setting also meant that blood tests could be performed prior to the surgery to ensure that any potential issues with excessive bleeding could be prevented, and antibiotics could be given afterwards to hopefully prevent any issues with infection.

Fortunately, I didn't have to make any decision there and then, as the podiatrist was just going to write a letter to my G.P. to explain the situation, i.e. the G.P. would then contact me to discuss what to do next, and organise the toenail surgery if applicable. In the mean time, I'd continue with the antibiotics and wait for the results of the swab.

The Swab Results

The morning after visiting the podiatrist, the swab results were back, and the infection had been identified as Pseudomonas Aeruginosa. No doubt that clears it all up for you, but I had to turn to my trusty friend Google to see whether it had anything of interest to share with me. As if by magic, it guided me to a couple of articles, amongst which two particular sentences stood out: "In immunocompromised patients, systemic infections can occur which may be severe and associated with a high mortality." [1] and "While mortality from the infection varies depending on where the infection is, how soon it is treated and the underlying weakness of the patient, some studies suggest a third of infected patients may die." [2]. That knowledge really helped to set my mind at rest!

With my curiosity well and truly satisfied, I decided to watch an episode of Grey's Anatomy (an American medical drama). The episode in question happened to be a story about one of the show's doctors being sued by a professional snowboarder. The professional snowboarder had acquired a post-operative infection after having a hip replaced. That infection ultimately led to both legs needing to be amputated. Why do I mention it? I hear you say. Well, as coincidence would have it, the writers had decided that the infection was none other than Pseudomonas! For the rest of the episode, I couldn't help but laugh each time one of the characters mentioned its name!

The District Nurse

Amusing stories aside, my G.P. recommended that I continued with the antibiotics, and organised a district nurse to contact me, so that some silver dressings could be used to cover my big toes, in order to reduce the chances of them continually getting infected. In other words, it seemed like, whilst the current infection was limited to my big toes, it wasn't really of much concern, as the antibiotics would clear it up, and the silver dressings would reduce the chances of acquiring any further infections.

As it happened, there were a couple of days between talking to a district nurse, and actually seeing one, as inbetween was the weekend; i.e. that time of the week when medical conditions take a break from their normal chaos causing duties, so they can recharge their batteries ready for another week of madness. Once the weekend had passed, I hobbled my way into the district nurse's clinic, who helpfully covered my big toes with the silver dressings, whilst in the process demonstrating how I could do so myself, and provided me with the necessary supplies for redressing them each day.

Back to the Hospital

The day after seeing the district nurse, I'd once again completed the course of oral antibiotics, but my big toes still weren't really looking any better, so I asked what the hospital recommended doing next - I had been keeping the hospital, specifically one of the bone marrow transplant co-ordinators, up-to-date with what was happening, just in case the specialists there had any additional insight to offer, given my medical history, hence the hospital was aware of my situation. In fact, said bone marrow transplant co-ordinator was probably a bit too aware, as I'd kindly provided photos of my big toes, so that my progress (or lack thereof) could be clearly seen! No doubt you're now itching to see the photos yourself, so, for your viewing pleasure, I hereby present:

Left Big Toe

Right Big Toe

The hospital recommended that I made my way in, so that I could be seen by one of the doctors, and in all likelihood be admitted and started on an IV antibiotic (Tazocin). That was indeed exactly what happened, but I was also prescribed an oral antibiotic (Metronidazole), as I mentioned that I'd been going to the toilet much more frequently again, and, even though I wasn't at the diarrhea stage, it reminded me of my recent run-in with C. Diff, hence I wondered whether the recent courses of the previous oral antibiotic (Flucloxacillin) had resulted in me heading back down that road.

On admission, a whole bunch of swabs were taken, none of which actually identified anything, but the swabs of my big toes were repeated the next day (when they were oozing) and they did confirm the results of the swabs taken at my local health centre, i.e. the infection was Pseudomonas Aeruginosa. Therefore, the plan was to continue with the antibiotics until the weekend had passed (day +298), when I would then see a specialist about what (if any) toenail surgery was necessary to resolve the issue.

The Acute Trauma Surgeon

It was late on the Monday evening when an acute trauma surgeon came to see me. To be perfectly honest, both the nurses and myself were quite surprised to see someone at that time. However, it turned out that someone else needed to see me really, i.e. someone that specialises in feet, so the acute trauma surgeon arranged for that to take place the next day. Having said that, we did have a brief discussion about removing the toenails etc, which was similar to the one I'd had with the podiatrist.

The next morning, when the doctors were doing their daily rounds, the roles kind of reversed a bit as I had to update the doctors with what the acute trauma surgeon had said and done, as even though it had all been carefully documented in my medical notes, one of the doctors described the calligraphy as beautiful but illegible. At the same time, I mentioned that my heart rate was still a bit high, and I was continuing to find myself a bit out-of-breath on light activity. The result of which was that the doctors arranged for me to have an electrocardiogram and echocardiogram later that day, just in case they shed any light on the subject - The results of both turned-out to be fine.

The Mystery Guest!

I'm told the specialist arranged by the acute trauma surgeon did come to see me, but unfortunately it was whilst I was having the echocardiogram, hence that meant waiting another day for the specialist to return. However, for whatever reason, the specialist never turned-up the next day, but I was assured that the specialist would come to see me the day after. The day after, someone did actually come to see me, and, whilst that person didn't quite look like what I was expecting, I assumed it was the specialist.

We had a chat about my big toes, which once again went along similar lines to the one that I had with the podiatrist, and the result was that I could go home on a different oral antibiotic, i.e. one that would hopefully clear-up the infection, with the plan of perhaps having some form of toenail surgery at a later date. I was keen to make my escape by this point, as the previous day I'd been moved to a different ward, which for various reasons is not as nice, hence I bugged the poor nurse that was looking after me to chase the doctors to arrange my discharge. If you are wondering why I'd been moved, it was due to a shortage of beds and that other patients were more ill than myself.

Later that day, one of the doctors came to see me, and started to apologise that the specialist (who is based at a nearby hospital) had once again not turned-up, and to address this issue arrangements had been made for me to go and see the specialist instead, as that would make it easier for us both to be in the same place at the same time. As you might imagine, I was somewhat confused, as I thought I was about to get discharged! After explaining the confused look on my face, and the doctor going to see what the mystery guest had written in my medical notes, it turned-out that no-one was quite sure who had come to see me, but it didn't matter as I needed to see someone more senior, i.e. the specialist (an orthopedic surgeon). Unfortunately, that meant it was more like my plans that would be escaping out of the window than myself.

Later that evening, after I'd remade the bed from the sheets I'd carefully tied together to lower me to my escape, another doctor came to see me (someone more senior). The doctor wanted to explain that behind the scenes a number of discussions had been going on (at various levels) to try to get things sorted, but a few issues were making it quite complicated: It's hard for the different specialties to fully appreciate my medical history; the particular infection I had, when combined with my recent run-in with C. Diff, meant that there wasn't really any good options for oral antibiotics; and communication and organisation can be tricky when different hospitals and departments are involved. That all meant that I might need to push a bit to get things done in a timely fashion.

The Orthopedic Surgeon

The next day, the hospital arranged transport for me to see the orthopedic surgeon. Due to the transport being arranged at the last minute, I had to go and return by taxi. Fortunately, that meant I didn't need to rely on the normal hospital transport, which is infamous for its waiting times, and that a member of the medical staff would need to go with me, as only they are allowed to take my medical notes. Whilst that may seem like a waste of NHS resources, if you ever saw the size of my medical notes, you'd soon realise that it takes someone that is both fit and healthy just to lift them!

Surprisingly, we had only been sat in the waiting area for a few minutes, before we were called in to see the orthopedic surgeon. Once again, I found myself discussing my big toes, and much like with all of the prior discussions, they didn't seem to be of much concern, as the orthopedic surgeon recommended that I was discharged on oral antibiotics, and I had another appointment in a month or so to decide what exactly was next. That recommendation was at the opposite end of the scale to what the senior doctor (consultant) had said would be best the previous evening. I had tried to explain that to the orthopedic surgeon, but I probably could have done so much more clearly, if I'm honest; I was just a bit taken aback by the difference in opinions.

As you might imagine, I was also kind of between a rock and a hard place, as I had two highly qualified and experienced medical professionals, albeit in very different specialties, recommending quite different treatment plans; I was just the lay person in the middle trying my best to not sound like some kind of crazed hypocondriac - I can't help but think that the orthopedic surgeon would likely say that I was unsuccessful!

As we made our way back in the taxi, I was thinking everything through, and could see how the consultant would likely not be very happy with the plan recommended by the orthopedic surgeon, so given that the nurse that worked with the orthopedic surgeon had given me a phone number that I could use to get in touch, I thought I'd give the nurse a quick call to make sure I'd understand what had been said, and that I'd clearly explained the issues around my medical history etc. As it happened, the nurse was unavailable when I called, so I arranged to call back a bit later, but not long afterwards the nurse actually called me, and we had a quick chat, before the nurse offered to put the orthopedic surgeon on the phone. After a chat with the orthopedic surgeon, where it seemed like I made a much better job of explaining things, another appointment was arranged for after the weekend, so that we could once again discuss what was best.

Foiling my own Escape!

Shortly after talking to the orthopedic surgeon on the phone, one of the doctors came to tell me that my discharge was being arranged, as recommended by the orthopedic surgeon, and that I'd go home on some form of oral antibiotic(s), i.e. a concoction that would hopefully cure the infection and not result in the C. Diff returning. However, after I explained that I'd just spoken to the orthopedic surgeon again, and that I now had another appointment after the weekend, my discharge was cancelled yet again.

Amusingly, as I was talking to the doctor, I found myself a bit distracted by one of the other doctors clearly struggling to find the meeting point between the curtains that had been pulled around my bed for privacy; I couldn't help but smile really, as the doctor in question had not particularly inspired me with confidence on prior occasions, hence being outwitted by a pair of curtains was kind of the final nail in that coffin, so to speak. It only amused me further when yet another doctor later joined the discussion, without even the slightest hint of any difficulty finding where the two curtains met.

Back to the Orthopedic Surgeon

Once the weekend was over, I was on my way back to see the orthopedic surgeon. Once again, a member of the medical staff and myself were going and returning by taxi, as it had been arranged at the last minute; I'd not chased organising it, as it clearly wasn't in my interest to do so. We did have to wait a bit before seeing the orthopedic surgeon, but I hardly had to say a word when we did, as the plan was now to remove the toenails on both of my big toes on the 9th of December (day +312), which in case you have lost track was only a week away. The plan wasn't a cast iron certainty though, as it sounded like some schedule juggling would be necessary.

Essentially, after a few quick questions about the likelihood of the surgery being successful, and the probability of getting an infection, I really just had to sign the consent form, and go to the pre-operative assessment clinic, where they would do a few routine tests to ensure that I was ready for the surgery. The surgery is successful in about ninety-five percent of cases, i.e. in the others part of the toenail grows back and may require further surgery. However, putting a number on the risk of infection wasn't really possible for me, due to my medical history; Normally, only about one or two percent of cases have an issue with an infection, but that was a bit academic.

There was another topic that was briefly discussed, and that was whether it was worth having an x-ray or MRI of my feet to see if the infection had spread to my bones, as that would mean changing the treatment plans somewhat. This had originally been queried by someone in the orthopedic team, but it seemed everyone thought it was extremely unlikely, even with my medical history. It was mentioned that an x-ray isn't really clear enough to say one way or the other though, so it would need to be an MRI if it was felt necessary. Also, should the MRI show that the infection had spread to my bones, the procedure would likely change to amputating my big toes instead. After the latter comment, I soon agreed to give just removing the toenails a try first!

The Receptionist

We had to wait a bit before we could make our way to the pre-operative assessment clinic, as one of the nurses needed to check whether they could squeeze us into their schedule - Ideally, as soon as possible, as we needed to get back to the other hospital really. The nurse went to see what could be done, but soon returned to say that in fifteen minutes it would be necessary to call them about it, as the person required was on a break. The nurse was actually going for a break now too, so the message was passed on to another nurse. That nurse said I'll just go again in a few minutes. The response to which was: You are brave. Despite that, the nurse went anyway.

At the time, we didn't really understand the comment about being brave, but it wasn't long after we were pointed in the direction of the pre-operative assessment clinic that it started to become clear, as everyone in the queue at the reception desk felt like they had been put in the naughty corner when they were asked to take a few steps back to wait in the designated area. To be honest, it was fair enough really, as the rationale was to give at least the illusion of privacy to the patient at the reception desk. After that, we definitely weren't going to leave the designated area until we were called though!

When we were called, we cautiously took the few steps forward to the reception desk, each of us wondering who was going to be the brave one that explained why we were there - It turned-out, it was the member of the medical staff that had come with me. After explaining that we were hoping to be squeezed-in as soon as possible, so that I could get back to continue my course of IV antibiotics, we were asked to take a seat whilst someone checked what (if anything) could be done. It was only a few minutes later that we were told that because I was going to have the toenail surgery with just local anaesthesia, we didn't need to see someone in the pre-operative assessment clinic, as the ward where I was admitted had likely done all of the necessary tests, and even if any other tests were required, they could easily be done on the ward. That just left building-up the courage to ask the receptionist about booking the taxi back.

The receptionist called the number that we provided for the taxi, but was asked to try again in half an hour when someone would be back from lunch. In the mean time, we were told to take a seat. That sounded a bit strange, but we didn't dare to question it. A little over twenty minutes later I asked the receptionist about trying again, but, after the receptionist had checked the time, I was told we needed to wait another ten minutes, so I sheepishly headed back to my seat - That told me! It was about fifteen minutes later when the taxi was booked though, after which we were soon on our way back.

Should I stay or Should I go?

That same day, the doctors decided to reduce my Ciclosporin dose from 100mg/day (50mg in the morning and at night) to 75mg/day (50mg in the morning and 25mg at night), as that would reduce my immune suppression slightly, thereby hopefully putting me in a better position to recover from and avoid further infections. Also, because the blood sample that had been taken several weeks earlier for checking my chimerism seemed to have just vanished, I needed to have another chimerism blood test - When the results came back, they showed that I was still 98% donor (full chimerism).

The next day, one of the doctors informed me that I was being discharged, and that I would go home on some concoction of oral antibiotics, which would hopefully keep me heading in the right direction, and that I would need to return a few hours before my toenail surgery for a couple of platelet transfusions, in order to prevent excessive bleeding. However, shortly afterwards it occurred to me that my blood counts had perhaps not been checked in preparation for my ECP treatment over the next two days. When one of the doctors checked, it turned-out that my hemoglobin was a bit low, hence that meant I needed a couple of red blood cell transfusions, therefore I'd be around for several more hours whilst they were ordered and pumped into me.

Whilst waiting, another doctor (someone more senior) stopped by to say that, after a discussion with the orthopedic surgeon, it seemed that in all likelihood my discharge would be cancelled; I likely needed to stay on the IV antibiotic, as there was some concern that the concoction of oral antibiotics wouldn't suffice, which would prove problematic for the toenail surgery. Either way, someone would let me know.

Later that day, yet another doctor told me that I could go home, as originally planned, if that's what I wanted to do. Inbetween, I'd seen a number of nurses etc too; Some of whom thought I was staying, and some of whom thought I was going. I'm pretty sure that the medical staff must have thought that I'd completely lost the plot, as I was never really sure whether I was staying or going, as it was difficult to tell who had the most up-to-date information about what was happening. In the end, I decided to stay for at least another couple of days, as: it was going to be late by the time the red blood cell transfusions finished; the next two days I needed to go to a nearby hospital for my ECP treatment; and there seemed to be some uncertainty around the concoction of oral antibiotics, so staying on the IV antibiotic was likely the better treatment.

Two days later, the decision about whether to go home for a few days was pretty much made for me, as it wasn't long now before the toenail surgery, so it seemed kind of pointless risking the concoction of oral antibiotics for the sake of a bit of time at home. The IV antibiotic was clearly working, slowly but surely, so continuing with it was still the better treatment plan really, and could potentially prevent any further issues.

Amusingly, the same day, my G.P. phoned me to say that the podiatrist's letter had arrived, and I needed to decide whether I wanted to go ahead with the toenail surgery. I was a bit surprised by the call, as I had mentioned to the G.P.'s secretary (a little over two weeks earlier) that I was almost certainly being admitted into hospital to get things sorted, but nevertheless I: explained that everything had already been arranged, apologised for the apparent lack of communication, and said thanks for the call.

Passing the time!

The only problem with choosing to stay in hospital (putting aside the delightful cuisine) is that there isn't a great deal to do. Inbetween getting showered, eating meals, taking medications, checking observations and the doctors' rounds, I mostly killed a few brain cells watching TV and tormented myself reading my Facebook news feed etc. Having said that, for reasons that are probably best left unexplained, Christmas decorations was a hot topic on the ward at the time, so one evening I distracted myself for a bit by making an intricate looking paper snowflake. Another evening I decided to do some more drawing; Specifically, Minnie Mouse as a nurse. You can check-out both of my creations below - As usual, simply click on the images to view them full size:

The Unexpected

As I mentioned earlier, I needed a couple of platelet transfusions before the toenail surgery, and it turned-out that the kind donor(s) had shared almost double the normal volume, which made the timing tight, so they were transfused (one after the other) at the maximum rate that the IV pump could handle. Whilst I'd never had problems with platelet transfusions in the past, it seemed like the combined volume and rate proved a bit too much for me, as I had a slight reaction to them; I was itchy and a hive like rash appeared. An antihistamine (Piriton) soon resolved that issue for me though.

After I'd been transported to the nearby hospital where the toenail surgery would take place, I had a surprise visit from a member of the physiotherapy team, as it turned-out that I needed crutches after the toenail surgery, as I'd likely struggle with walking for a bit, given both of my big toes were being operated on. The crutches were adjusted to suit my height, and I was shown how to walk with them, as well as how to go up and down stairs. I was also given a leaflet on the subject to help jog my memory.

The Toenail Surgery

It had been a long time coming, but the weekend had passed, and it was finally time for the toenail surgery. By this point, the IV antibiotic (Tazocin) had enabled both of my big toes to look and feel almost normal again, hence it was a bit disappointing in a way that I was now about to make them pretty sore for a while. However, had I even jokingly suggested the idea of not bothering with the toenail surgery, I think my doctors would have almost certainly suffocated me with a pillow, so in the grand scheme of things sacrificing a couple of my toenails was clearly the wisest choice that I could make.

Whilst you may actually prefer to take my word for how the IV antibiotic (Tazocin) proved to be superior to the oral antibiotic (Flucloxacillin) for clearing-up the infection (Pseudomonas Aeruginosa) in my big toes, I thoughtfully kept track of my progress with another set of photos, so you didn't miss out on the oozing of blood and pus - I actually took them to enable the doctors to see the progress, as the vast majority of the time my big toes were covered with dressings to help keep them clean, but...

Left Big Toe

Right Big Toe

It wasn't long before it was time for the orthopedic surgeon to start the ball rolling, which meant injecting the local anesthetic into both of my big toes. This was the bit that I was least looking forward to, as in the words of the orthopedic surgeon "it will smart a bit" and "it will hurt you more than it hurts me". The needle was almost long enough to go right through my big toes, and it needed to be gradually pushed all of the way in, whilst injecting the local anesthetic, in a couple of places in both big toes.

As the orthopedic surgeon started to inject the local anesthetic, you could see the medical staff looking at me with great anticipation of a mixture of profanities and screaming, whilst at the same time thinking to themselves "wait for it... wait for it...", but much to my relief (and perhaps disappointment of everyone else) I hardly felt a thing. That meant, after giving it a few minutes to kick-in, whilst the orthopedic surgeon etc dressed for theatre, it was time to wish a final farewell to a couple of my toenails.

As I was pushed into the theatre on an operating bed, I remember thinking that all of the gadgets made it look pretty impressive, but perhaps more memorably I decided to comment that the medical team (in their surgical gowns) looked like the teletubbies. After hearing those words leave my mouth, I added that was probably not the best thing to say to the highly-skilled medical professionals that are about to take a scalpel to your big toes. Fortunately, only the person pushing the operating bed heard me!

The operation itself seemed pretty simple. I could actually watch the orthopedic surgeon work on one of my big toes, whilst someone else was guided through the process of doing the same to my other. The only slight complication was that I needed a bit more local anesthetic in one of my big toes, as I could still feel it at first. It did seem to surprise at least one member of the medical staff that I watched it all.

Essentially, after checking that the local anesthetic was working and tourniquets had been applied to stop my blood gushing out, the toenails could pretty much just be pulled off. That left using a scalpel to make a few incisions along the bottom of where the toenail had been, applying some acid (Phenol) to the same area to prevent the toenail from coming back, thoroughly washing the acid away with saline after about forty-five seconds, putting a dissolvable stitch at the bottom of each side of where the toenail had been, applying a sufficient amount of the pressure dressing to remove the tourniquets, removing the tourniquets, and completing the pressure dressing. (I've glossed over the various cold fluids applied to my feet to help prevent infection.)

Once the toenail surgery had been completed, I had to slide my way on to a hospital bed, so that I could be taken to another room for an hour or so, where my observations could be checked regularly, before being transported back to my hospital of origin. It all went smoothly, except that as I climbed my way out of a wheelchair into bed, thereby completing my journey, I realised that my shiny new crutches had been lost in transit. All was not lost though, as I did still have the leaflet describing how to use them!

The Aftermath

Unsurprisingly, after having your feet operated on, it is recommended that you keep them elevated to prevent excessive bleeding. The plan was for me to spend a couple more days on the IV antibiotic, before being discharged on the concoction of oral antibiotics, hence keeping my feet elevated was easy enough. The reason for staying that bit longer in hospital was to hopefully prevent my big toes from getting infected.

Unfortunately, despite my feet being elevated, later that evening (and through-out the night) they bled quite a bit. The nurses that were looking after me had to clean-up the blood that was all over the end of my bed and the floor on a few occasions. I also saw a couple of different doctors, as it wasn't something that any of the team there had encountered previously, hence they wanted to ensure that I got the right treatment.

Initially, some additional dressings were added over the top of the existing dressings, in order to help stop the bleeding, but later on those dressings were removed, as well as part of the original dressing on one foot, as they were all soaked with blood. After adding more dressings to replace those removed, the bleeding eventually stopped. However, over the next day or two, as the blood dried-up, the dressings on my feet turned into what felt like concrete boots, which ended-up being pretty uncomfortable!

It was actually the concrete like boots that resulted in yet another discharge being cancelled; I'd asked whether the dressings could be replaced, as I didn't want to go home with them squashing and digging into my feet, unless I really had to do so. However, that meant waiting another day, so that the right people could be asked about removing the dressings, and what exactly would need to be put on in their place.

Home Sweet Home!

The next day, one of the nurses had managed to contact someone to check about replacing the dressings, and I could finally get rid of my concrete like boots, and head on home! The poor nurse that acquired the job of replacing the dressings proved to have quite the challenge on her hands though, as with all the dried-up blood, they weren't coming off easy. I had to soak my feet in hot water on a couple of occasions, as parts of the dressings were removed, and removing the last bits around my big toes themselves wasn't the most pleasant of experiences, as it sure stung a bit!

Both the nurse and myself had hoped that once the dressings were off, it would just be a relatively simple job of applying some new dressings, and I'd be ready for going home. However, removing the dressings resulted in yet more bleeding, particularly on one of my big toes. The nurse tried applying pressure and using a tranexamic acid solution (it helps blood clot), but still had to replace the dressings a couple more times during that morning before the bleeding actually stopped. Even the dressings that I finally went home with looked a bit red, but they were much more comfortable, so I could live with that until they were redressed, as it was only the next morning that I had an appointment at the dressings clinic to get them checked and redressed yet again!

On the 12th of December (day +315), I actually made it all of the way through the discharge process, and went home with my usual medications, some tranexamic acid tablets, and the concoction of oral antibiotics that would hopefully keep me infection free. The concoction turned-out to be Ciprofloxacin, for mopping-up any remaining Pseudomonas Aeruginosa, and Vancomycin, for preventing C. Diff from returning.

Note: I had wondered whether I might be prescribed Vancomycin, as that's what I was given when I actually had C. Diff; My thinking was that if it could be used to treat it, then perhaps it could be used to prevent it too - The doctors didn't seem sure either though, as it's not something they'd normally do. (As it turned-out, the week of Ciprofloxacin and Vancomycin slowly pushed my stools in the direction of diarrhea, but the extra week of Vancomycin afterwards brought things back again. That likely means I made the right decision to stay in hospital on the IV antibiotic prior to the toenail surgery, as I'd imagine that two weeks of Ciprofloxacin would have proven problematic.)

The next morning, the dressings were still a bit awkward to get off, but nowhere near as bad as the previous day. Even though the nurse redressed them slightly differently, my feet still looked like something out of "The Mummy"! It wasn't actually until five days later when they were redressed again that the dressings were scaled-down a lot. You can see what the dressings immediately after the toenail surgery, and the dressings once scaled-down, look like below - I'm saving what lies beneath for another post:

The Lesson Learnt

I've previously joked that, after being diagnosed with cancer, you need to talk to the hospital that managed your care about any health issues, because your medical history complicates nearly everything; Your G.P. can only help with something as trivial and clearly unrelated as an ingrowing toenail! Well, after the above experience, which still may not even be over, it seems I need to find myself a better example!

How national is the health service?

Over the last seventeen months, my cancer treatment has taken me to five different hospitals in the National Health Service (NHS), and I've been quite surprised by some of the things that vary from one hospital to the next, hence, in a change to my usual posts, I thought that it might be interesting to share some of my observations, as I'd imagine that the health service is not quite as national as most of you would expect.

It was probably about a year ago when I first noticed that there are variations between hospitals, as all of my prior treatment, right from the initial diagnosis in February 2009, had pretty much exclusively been at my local hospital in Cottingham; It was really only my PET-CT scans and hickman line insertions that had taken place at a different (also local) hospital in Hull, and that was purely down to those services not being available at the hospital in Cottingham. In other words, it was really only when I first visited a hospital in Leeds, and a month later started the process of switching my primary care to a hospital in Sheffield, that the variations between hospitals began to come to light.

The first difference that I noticed was that each of the hospitals had their own manual process for managing their clinics, i.e. keeping track of the patients etc, and that some were better than others when it came to things like informing the patients about their position in the queue. Given that I work in software development, it's likely of no great surprise that my thoughts turned to how these clinics could potentially benefit from some kind of computerised system, and I actually even created a quick demo of the kind of thing that I had in mind; I provided it to my local hospital in Cottingham as part of some feedback/suggestions that I sent them relating to my care over the years.

Note: There are a couple of screenshots of the demo below (click to view them full size), just in case you're curious what it looked like; The actual demo simulated the activity of a clinic, albeit sped-up, to give a better feel for how it would look/work. The idea was that what you can see in the screenshots would be on display in the waiting areas, so that everyone could see an overview of the clinic (screenshot on left) and patients could be alerted when a doctor was ready to see them (screenshot on right):

Making better use of modern technology has actually become somewhat of a recurring theme in the feedback/suggestions that I've provided to the hospitals responsible for my care, as it seems there are quite a number of processes/systems in hospitals that involve the use of paper and whiteboards etc, when a computerised approach would offer benefits such as easy archiving and backing-up, not to mention the potential to access that information from any device connected to the hospital's network.

The access to information, both electronic or otherwise, is another area that highlights the variations between hospitals, and how processes/systems are often more local than national, as it seems that, instead of centralised computer systems, numerous adhoc/individual solutions are quite common place; Hence, communication between hospitals in shared care situations can quickly become complicated, leading to things slipping through the cracks, and the quality of patient care rapidly deteriorating. You may recollect that the hospital in Sheffield were sometimes reluctant to share my care with my local hospital in Cottingham, due to concerns around miscommunication, and that a radiologist in Sheffield was unable to review one of my CT scans properly, due to not having access to the prior CT and PET-CT scans I'd had at other hospitals.

Taking a more centralised approach, thereby making the most of the health service's national status, would seem to be a beneficial change in other areas too, as even the purchasing of equipment and medication would appear to be managed more locally than nationally, based on discussions that I've had with some of the staff, and what I've seen used in the different hospitals. For example, even things like the connectors that are attached to my hickman line vary from one hospital to the next, when you'd likely expect the same ones to be used nationally, if only to secure a good deal on the price; I'm not sure whether there are any significant differences between them, but I put together the following image to show the four types (around the edge) that I've seen, as well as to show the cap (in the centre) that the hospital in Sheffield recently trialled; The latter aimed to reduce the number of infections introduced via central lines.

It's not just the brands/models of equipment that differs though, as occasionally what type is used does too. For example, with the exception of at my local hospital, my blood pressure has nearly always been measured using an automated machine, instead of manually with a stethoscope; My local hospital, after trialling the automated machines, came to the conclusion that the manual approach was better, as it was more accurate and gave the nurses control over how much pressure was applied to patients' arms, thereby enabling them to avoid bruising patients prone to such issues. Also, whilst my local hospital has always given me platelet transfusions without the use of an IV pump, apparently to avoid the platelets being crushed in the process, whenever I've had platelet transfusions in Sheffield an IV pump has always been used. In both instances, you'd likely expect a best practice to be agreed/used nationally.

Sometimes even the medication/treatment given varies between hospitals too. For example, the conditioning regimen that I would have been given for my Allogeneic Stem Cell Transplant (Allo-SCT) would have been different had I gone to the hospital in Leeds, instead of Sheffield. Whether one is any better than the other, in that particular instance at least, is probably not really known, due to insufficient evidence, but nevertheless you might expect to be treated the same throughout the NHS.

Note: Anthony Nolan, a charity that runs one of the UK's bone marrow registers, are currently trying to raise awareness of how post Allo-SCT care varies around the country, as can be seen in their associated news article and web page; One such variation being only some make use of ECP to treat GVHD. Incidentally, should you take a look at the report, the patient story on page thirty-four will likely sound familiar.

Putting aside the more clinical differences, it soon became apparent that the facilities being offered vary too. For example, TV, phone and/or Internet services aren't always available, and whilst in some places they are provided for free, in others the prices are extortionate. Also, whilst it's perhaps understandable that the price of parking ranges from free upwards, it seems odd that the factors that influence that, such as the type of treatment you are having, whether you have a disabled badge, and where you park, varies between hospitals. For both, you'd likely hope it was the same nationally.

Finally, there are a couple of other differences that stood-out too. The first, which in some ways probably surprised me the most, is that even the uniforms are different between hospitals. For example, in Sheffield the uniform worn by a qualified male nurse looks very similar to that worn at my local hospital by a student nurse - As you might imagine, that caused me some confusion initially, when nurses seemed to be doing jobs for which they weren't qualified. The second, which has at least on occasion provided a source of amusement, is that the catering differs too. For example, not only do the daily menus vary, but some hospitals out-source the catering whilst others do it themselves. If you are wondering what exactly is amusing about the catering, hopefully a couple of my recent orders will help to clear all of that up:

• At my local hospital, when the breakfast trolley came around, I asked for Branflakes, only to find out that they had recently been removed from the menu. When I asked why, it turned-out that the reason was that patients often thought that Branflakes were the healthy option, when in reality they are sugar-coated. However, I could still order Frosties. I actually ordered some Cornflakes though, and proceeded to bury them in a tonne of sugar!
  
  
• At the hospital in Sheffield, I recently ordered "Strawberry Jelly Rip" for my dessert, as that was the first time that I'd seen that on the menu, and I was curious what exactly would turn up. As you will no doubt appreciate from the photo below, there's a reason why it's not offered in chocolate flavour!
  
  
  

The joys of being immuno-suppressed!

As you may have guessed from my previous post, things didn't exactly go smoothly between my third and fourth ECP treatments. In fact, it was actually the night before starting my third ECP treatment when I first noticed that I might have picked-up some kind of infection, as when I woke-up in the early hours of the morning I had a run-of-the-mill sore throat. I assumed that it would gradually fade away as the day went on, as sore throats tend to do, but, even though it did seem to ease a little at first, by the next morning it had definitely got worse - I had appointments at the usual Rotherham and Sheffield hospitals that morning though, hence I knew that I could get it sorted.

When is a sore throat not just a sore throat?

As luck would have it, in Rotherham, the second day of the ECP treatment tends to be when one of the doctors checks on your progress, hence it wasn't long after I arrived there that I had the opportunity to mention my sore throat. I had hoped that the doctor might offer me some pain relief, as my throat was quite sore, but I failed to explain just how much so, and I looked fine, so the doctor likely assumed that it was only minor, which is understandable really, and consequently never prescribed me anything.

As the morning went on, my throat continued to get worse, and I began to feel worse too, hence I asked one of the nurses if I could get something to soothe my throat. The nurse asked for a doctor to come and check me over, so that some pain relief could be prescribed, but after the doctor had asked me a few questions, and looked at my throat, someone more senior needed to be consulted to check whether I should really be given some antibiotics, due to my immune system being weak/suppressed.

It was probably a couple of hours later, just after the ECP treatment finished, when I was given a prescription for some antibiotics and cough medicine. One of the nurses was going to do some blood cultures and throat swabs too, but when I mentioned that I was on my way to the Sheffield hospital next, where they would be doing some blood tests, the plan changed to just doing everything at the Sheffield hospital instead, as that would minimise the number of nurses that needed to access my hickman line.

On my way to the Sheffield hospital, I picked-up my prescription, and had some of the cough medicine, in the hope that it would help to soothe my throat - It never made any difference though, and it wasn't much fun to swallow. I never took any of the oral antibiotics, because I expected to be admitted to the Sheffield hospital, where I'd be given IV antibiotics, as my symptoms had progressed from just a sore throat to also include: a high temperature (38.6°C), a high heart rate (140bpm), low blood pressure (80 over 50), and shivering. In other words, I looked and felt like death warmed up!

Shortly after arriving in Sheffield, one of the doctors came to see me, and sure enough I was admitted and started on Augmentin (antibiotic) and Paracetamol (analgesic and antipyretic), both via IV. The Augmentin was switched to Tazocin after a few doses though, because my recent history with C. Diff meant that Augmentin wasn't really advisable. Also, I was later prescribed Difflam (mouthwash) and Oxetacaine (local anaesthetic and antacid) to help with my sore throat, as it was still quite sore.

Note: If I was reading this, I'd likely be thinking: It was only a sore throat, why are you making all that fuss about it? Well, I've had sore throats in the past, some worse than others, but this was truly in a league of its own. I guess it goes to show that when people say something is painful, e.g. a sore throat, you never really know what they mean. I was asked, on a scale of one to ten, where ten is the worst pain imaginable, what would I rate it, and I said maybe six or seven - It is hard to say/decide though!

Passing the time in a shared room!

It was probably a couple of days before I mostly felt fine again, at which point I was more interested in a cure for boredom than anything else. My phone was pretty much my main source of entertainment really, as I used it to: listen to music, try to beat my high scores on solitaire and sudoku, and occasionally, after wandering down the corridor to the edge of the ward, where I could just pick-up a weak signal, check my email etc. Fortunately, I was in a room with four beds, hence talking to the other patients (if they were in the mood) and the staff (as they popped in and out) helped to pass the time too. That actually reminds me of a few stories that amused me:

• One patient, who spent most of his time reading Jack & Jill by James Patterson, had by sheer coincidence positioned his bedside lamp such that, as I looked out of the window from my bed, the reflection that I could see in the window made it look like he was wearing his lamp as a hat! (That often made me smile, as it was very much against his character.)
  
  
• Another patient, who designed lighting for a living, was using FaceTime (Apple's video chat app) to talk to his family one evening, but the webcam in his iPad was obviously struggling to capture a decent picture, hence he decided to put his bedside lamp on to see whether that helped, but in a perfect case of irony he couldn't work out how to turn it on! (To be fair, the bedside lamp did have three separate switches that all needed to be in the on position for the light to come on, hence it was poorly designed really; You had to guess which switch the last person used to turn it off.)
  
  
• One night, all four of the beds were occupied, but only one patient was managing to get any sleep, as his snoring was that loud it was almost beyond belief. I'm pretty sure that the reason an empty medicine pot fell off my bedside table (for no apparent reason) that night was actually down to the vibrations from that guy snoring! I actually layed there thinking about that very idea, and was reminded of the well-known scene in Jurassic Park where you could see the ripples in a glass of water as the T-rex was gradually getting closer. In fact, if, by some miracle of modern science, we could bring back the biggest T-rex you could possibly ever imagine, even its loudest ROAR would have been easily out-classed by this guy snoring!
  
  

As those stories likely demonstrate, I clearly wasn't living the high life, but I must admit that the view from the room was most impressive. The first two photos below show the day and night view of one particular area of Sheffield, as seen when looking out of one of the windows, and they do give an idea of what it was like, but don't quite do it justice. The last photo below shows my attempt at capturing a kind of wide angle night view, as seen when looking out of the six adjacent windows, but unfortunately it fails to even compare to seeing it yourself! (Click on the photos to view them full size.)

Making my escape!

Once you start feeling better, it doesn't take long before you're thinking, can I go home now? Unfortunately, I've often found that I have to stay for the full course of antibiotics, which tends to be about five to seven days. There's also the issue of waiting for the blood culture and throat swab results to come back, which tends to take a couple of days for the preliminary results, and potentially a few days longer for the final results.

Note: The idea is that the test results help the doctors decide whether to prescribe a different antibiotic, i.e. one that is known to be more effective for fighting whatever infection was found. However, I've always felt fine by the time that the results come back, so they've always seemed a bit academic, even if my antibiotic was changed.

One thing that I did find out quite quickly though was that I was neutropenic, which meant that I needed G-CSF injections (in the stomach) to boost my immune system. It only took a few days on those before my neutrophil count went from being well below the norm to being well above it, hence that was sorted quickly/easily enough. However, I was finding myself feeling a bit out-of-breath on light activity, hence one of the doctors requested that I had a CT scan of my chest, just to see whether it shed any light on the issue. At the same time, another chimerism blood test was requested too. (The doctor was also interested in seeing the results for my latest lung function test.)

As it turned-out, everything seemed to wrap-up on the 15th of October (day +257), as I finished the course of antibiotics, the final results for my blood cultures and throat swabs were back, a blood sample had been taken to test my chimerism, and I had the CT scan of my chest. The blood cultures and throat swabs had failed to find anything, and a quick look over the CT scan showed that my chest was infection free; The chimerism blood test results wouldn't be available for a couple of weeks, hence they would be reviewed at a later date. That meant with a bit of nagging, I managed to see one of the doctors, who asked me whether I'd like to go home. Needless to say, I quickly packed my belongings, before someone found a reason for me to stay!

It was all going so well...

A few days later, I woke-up to find both of my big toes were swollen and throbbing, one much more so than the other, and my temperature was high (39.1°C), hence after a few phone calls I soon found myself being admitted to my local hospital with what was probably another infection. It seemed likely that my ingrowing toenails, which had been gradually getting better, had provided an easy entry point for some infection or other, and my immune system being weak/suppressed was allowing it to cause problems.

By the time that I'd stumbled my way into hospital, with my bare feet half-slipped into my trainers in a somewhat unsuccessful attempt to avoid making them hurt more, my symptoms were pretty much the same as a week or so ago, only the pain was in my big toes instead of my throat this time, and not quite so bad (more like a five or six).

Before being started on antibiotics and pain relief etc, I went through the all too familiar routine of: having blood cultures/tests done; getting my blood pressure, temperature, heart rate and oxygen saturation checked; and describing my symptoms (as well as my recent medical history) to a doctor. Once that was out of the way, I just had to wait for a room to be ready in one of the wards in the hematology and oncology centre.

Once I was settled in my room, I needed to make the few metre walk from my bed to the ensuite, as the fluids that I was being given to hydrate me were already wanting to make their way out. I only just made it to the toilet (and sat down) before starting to feel really light-headed, and on my way back I pretty much collapsed on to my bed, as my vision was starting to go. Fortunately, when on fluids, hospitals like to monitor how much is going in and out, to make sure that the two don't get too far out of balance, hence that meant one of the nurses later brought me a measuring jug, which I kept near my bed initially to save me from almost passing-out each time I had to go!

Note: For some reason, my local hospital seemed to be somewhat more cautious about what room I stayed in, as they wanted me to be in a negative pressure room by myself; The idea behind a negative pressure room being that when you open the door, the air rushes in, thereby preventing anything contagious from getting out. It seemed like a sensible idea in principle, but given how often my door was left open, I couldn't help but wonder whether it really just sucked any nearby infections into my room!

Back to killing time!

I responded quickly to the antibiotics and pain relief etc, as within a few hours I felt much better, but it was four days later before I was eventually discharged with a seven day course of oral antibiotics (Flucloxacillin). That once again meant that my phone was my main source of entertainment for a while - I'll soon be a sudoku grandmaster. I struggled to get any kind of signal in that room though, and I wasn't supposed to leave it, hence that meant no Internet access, until my laptop was brought-in; There is a very restricted wired Internet connection, which is really intended for staff, but it lets you access a few websites! (I essentially used it to check my email and that was it.)

Note: The blood cultures failed to find any infection, but one of the doctors explained that with patients such as myself, i.e. those with weak/suppressed immune systems, it's not all that surprising really, as it doesn't take much to cause a problem, hence whatever infection was present can be insufficient to be detected. The blood tests did show that I was neutropenic again though, hence I ended-up back on the G-CSF injections (in the stomach) until my neutrophil count had fully recovered.

My local hospital did provide another source of entertainment though, even if it wasn't exactly intentional, as I used the whiteboard in my room to draw a couple of cartoon characters, and that killed a bit of time one evening. It actually ended-up killing more time than I first imagined though, as that resulted in one of the nurses bringing me some paper, and almost instructing me to draw some more! The most popular seemed to be a drawing of Tweety Pie, which you can see in the photo below:

The waiting is over!

I was actually discharged on the 22nd of October (day +264), just in time to start my fourth ECP treatment the next day, with the plan of following things up with the team in Sheffield on the 29th of October (day +271) when having my monthly check-up and dose of Pentamidine. Fortunately, that all went to plan, and other than the doctor recommending that I made an appointment with my local health centre to get the ingrowing toenails checked-out, which is now arranged for the 5th of November (day +278), a couple of comments about my recent CT scan and lung function test looking fine was pretty much all that was said. My pulse still being a bit high (about 100bpm at rest), and it likely being related to me finding myself a bit out-of-breath on light activity, was mentioned too, but the hope is that will sort itself out, given a bit more time.

Is the ECP treatment starting to work?

I've had both the third and fourth ECP treatments now, but it's still a bit too soon to say whether it's really working. Having said that, despite my steroid (Prednisolone) dose being reduced from 20mg/day to 15mg/day (a week before the third ECP treatment), and it then being further reduced to alternating between 10mg/day and 15mg/day (on the second day of the fourth ECP treatment), I'm yet to encounter a dramatic flare-up of the skin GVHD. It is early days though, as it was only yesterday that I finished the fourth ECP treatment, and started on effectively a 12.5mg/day steroid dose.

The third and fourth ECP treatments went fine really, except that the machines played-up a bit, which meant that I was connected-up for a bit longer than would have otherwise been necessary. Specifically: on the second day of my third ECP treatment, the machine kept alarming about the system pressure when trying to filter-out my white blood cells, and, after it had alarmed about six times, the nurse decided to start again, which meant everything that had been collected needed to be returned to me, and a new kit had to be put on the machine; and, on the first and second days of the fourth ECP treatment, the machine kept alarming about low air flow (every fifteen seconds) when zapping my white blood cells with UVA light, which meant the nurse had to effectively keep pressing the continue button until it eventually finished.

You can see most of what constitutes a kit (the bowl and tubing etc) in the photo on the left below. The kits cost between £500 and £700 each, and Rotherham use up to about ten per day, i.e. one for each of the eight patients they treat, plus the odd one or two extras when issues are encountered. I took that photo towards the end of the first day of my third ECP treatment, whilst my blood was being returned to me, i.e. after my white blood cells had been filtered-out, sensitised with UVADEX, and zapped with UVA light. A close-up of the touchscreen is shown in the photo on the right, which was taken on the second day of my fourth ECP treatment, whilst the machine was about halfway through filtering-out my white blood cells. Despite my attempts to avoid being in that photo, you can see my hands, mobile, and bald head in the reflection on the touchscreen - You may need to click on it to view the full size version though!

I've still not really noticed any significant side effects from the ECP treatment, but I do get the impression that it leaves me feeling a bit more tired than usual, particularly on the second day, and that I would have to be more careful about exposure to sunlight, if it was actually sunny in the UK; The weather has been slightly brighter on a couple of occasions when I've had the ECP treatment, and after the drive home I did feel like I had burnt ever so slightly, despite having used factor thirty suncream.

The tiredness and sensitivity to sunlight may have seemed a bit more significant as time has progressed, but I've gradually become less strict with the low-fat diet immediately prior to each ECP treatment, and doing so doesn't seem to have made any difference to the ease by which the ECP machine works its magic. One of the nurses did say that whilst generally speaking the low-fat diet can be helpful, some patients seem to be able to eat whatever they like without it causing a problem, and other patients have problems even when following a strict low-fat diet, hence, as with most medical treatments, experiences do vary from one patient to the next.

ECP treatments aside, you may remember that immediately prior to my third, I needed to have a lung function test, in order to establish a new baseline and enable my progress to be monitored. I've had a few lung function tests in the past, and this one was no different; It simply involved following some basic instructions to breath in and out through a mouthpiece in a variety of ways, e.g. sharp breaths in/out, holding my breath and breathing normally, so that measurements such as my lung capacity could be determined. The only thing that I did find slightly amusing about the process was that the last test simply involved breathing in and out normally for about five minutes, during which time the operator of the lung function test machine kept repeating over and over: "You're doing really, really well". It was no doubt just something to say to fill the kind of awkward silence, but even so it's strange being congratulated for managing to breath in and out normally. After all, I've had thirty two years or so practise now!

Finally, if you've read my earlier posts on the ECP treatment, you're now no doubt on the edge of your seat waiting to find out whether I broke my record on the walking test, so I won't make you wait any longer... drum roll, please... my personal best is now two hundred and twenty metres! That new record was from my third ECP treatment; I just didn't quite manage to match it with my fourth ECP treatment, and I was left slightly more out-of-breath; However, there's likely a good reason for that, but you will have to wait until my next blog post to find out why, as this one is long enough already!

Was the second ECP treatment any different to the first?

It was the 24th of September (day +236) when I started on my second ECP treatment, and, just like with the first, it all went smoothly and has been free of any noticeable side effects. It is possible that I was more sensitive to sunlight for a short while, but it's hard to say really, as I followed the advice about the use of high-factor suncream and UVA protecting sunglasses etc, hence it may well be that doing so is what prevented any issues. Of course, the weather in the UK might have something to do with it too!

On the first day of the second ECP treatment, I did have to wait for about an hour and a half before I could get hooked-up to an ECP machine, as for some reason they were all in use upon my arrival, so that meant I had plenty of time to do the walking test. The result of the walking test, given the various factors that likely affected my performance previously, was hardly surprising: a new personal best (albeit well below the record).

I walked about one hundred and eighty metres in the two minutes allocated for the walking test, which was roughly thirty metres further than the previous time. That's probably still a bit on the low side, to be honest, as one of the doctors mentioned that the idea is to walk as quickly as you can, without getting out-of-breath, otherwise you might not notice any difference in your capabilities; I never did that on either occasion really, so I expect I will be setting my new personal best tomorrow (day +250) when I start my third ECP treatment. Whilst discussing the walking test with the same doctor, I also found out that part of the reason for doing it is that the steroids I take can cause muscle weakness in the arms and legs, hence it can be used to monitor for the latter.

The actual treatment itself took about two hours on both days, which was about thirty minutes longer than with the first ECP treatment, but that was because my hickman line wasn't allowing the ECP machine to draw my blood quite as quickly; Hickman lines are great for gaining access to the bloodstream, especially for patients like myself whose veins are hard to find, but they do vary in performance on occasion, hence it was just one of those things, and made no real difference to me really.

One of the doctors did explain that, with it only being my second ECP treatment, the doses of the medications (Prednisolone and Ciclosporin) being used to suppress my immune system would remain as they were for the time being, but that they may be reduced when I start my third ECP treatment, as by then it is hoped that it has had sufficient time to start to work. However, the day after my second ECP treatment, I was instructed to reduce my Ciclosporin dose from 75mg twice daily to 50mg twice daily, as a blood test had shown that the levels in my bloodstream were too high.

I did wonder whether the reduction in my Ciclosporin dose might have resulted in my blood pressure returning to normal, as it had been quite high (for me at least) for about a month, but when it was checked at my monthly check-up in Sheffield, after nearly a week on the lower Ciclosporin dose, it was actually slightly higher. When I asked the doctor about it, I was informed that the combination of the two medications used to suppress my immune system was almost certainly the cause, and that I could add Amlodipine to my daily medications (for the time being) to address the issue.

The doctor in Sheffield also decided to reduce my Prednisolone dose from 20mg/day to 15mg/day, partly due to my blood pressure, but also because, with my skin showing no real signs of GVHD (except perhaps on my feet), there was always the possibility that the immune suppression was not only preventing a flare-up of the skin GVHD but also giving any remaining Hodgkin's Lymphoma an unhindered opportunity to grow.

The reduction in the Ciclosporin and Prednisolone doses has resulted in the skin GVHD becoming slightly more noticeable, but only for a short period after getting a hot shower. In fact, now that I think about it, I can't say that I noticed any difference when the Ciclosporin alone was reduced, so it may be that it was reducing the Prednisolone that proved significant. Having said that, my Magnesium, Potassium and Calcium levels have improved since reducing the Ciclosporin; They had all been slightly low.

What was the first ECP treatment like?

In my previous post, you may have noticed that I sneakily slipped-in the news that my skin GVHD does need treating with ECP, after all. Therefore, it probably comes as no great surprise that, after stopping the steroids, my skin GVHD continued to gradually get worse, particularly on my lower legs and feet. I did manage two weeks and two days without any steroids though, before the skin GVHD flared-up too much; That was about a week or two longer than previously, so being on another immune suppressant (Ciclosporin) did seem to make some difference - Unfortunately, it just wasn't enough.

Note: You may remember that the plan had been to review my skin GVHD at a check-up on the 3rd of September (day +215), but it was actually a week earlier, whilst having my monthly dose of Pentamidine, when I was put back on the steroids (20mg/day of Prednisolone) and arrangements were made to start ECP, as when a doctor had a look at how the rash was progressing, whilst prescribing me some more cream, it was clear that the general feeling was that Ciclosporin alone wasn't going to be enough, as the rash on my lower legs and feet was now looking too severe.

By the time that the check-up on the 3rd of September (day +215) did come around, the steroids had once again got the skin GVHD under control, and the rash had mostly disappeared. It was definitely nice to be heading in the right direction again, as, even though it was more of an inconvenience than anything else, the skin around my eyes and mouth had been getting really dry, and despite the use of various creams had still been occasionally cracking and bleeding, so sometimes looked and felt a bit sore.

Preparation

Before I could start the ECP treatment, I needed two units of red blood cells, as the blood tests that I had a week in advance showed that my hemaglobin levels were only just above the minimum required, hence it was better to have a transfusion than to find my hemaglobin levels were too low on the day. That did mean spending seven hours a few days before the ECP treatment getting topped-up, as well as having a blood test the day prior, so that the right blood type could be ordered, but that was all organised to take place at my local hospital, so at least I didn't have to travel far (for a change).

Once topped-up with red blood cells, all that left, in terms of preparing for the ECP treatment, was following the recommendations about what to eat and drink in the two days prior, and ensuring I could protect myself from sunlight in the day following. The latter was easy, as it just meant buying some high-factor suncream and wrap-around sunglasses, but the former proved trickier than I first imagined, as it turned-out that pretty much everything I normally eat included something that I was supposed to avoid. In fact, it was looking like I might achieve the low-fat requirement more by starvation than anything else. Having said that, I wasn't suppose to skip any meals!

Treatment

On the 10th of September (day +222), after all of the uncertainty around whether I really needed ECP or not, I finally started the first treatment. As you may remember, each treatment is split over two days, where each day you go through exactly the same process. The process was pretty simple for me really, as once I was connected up to the ECP machine, using the two connectors on my hickman line, all I had to do was sit there for ninety minutes or so, whilst my white blood cells were filtered off, sensitised with UVADEX, zapped with UVA light, and returned back to me. If it wasn't for the noisy ECP machines, and the elaborate arrangement of tubing carrying my blood back and forth, I would have never even known anything was happening!

The first day of the ECP treatment was slightly more involved than the second day, as, to enable the tracking of progress over the coming months and to check that it's okay to proceed with the two days of ECP treatment, it's necessary to do some additional testing. There's no prize for guessing that is mostly achieved with blood tests, but it also includes a walking test, which simply involves seeing how far the patient can walk in two minutes. The rationale for the walking test is that skin GVHD can sometimes result in restricted movement (some patients receiving ECP also find themselves much more easily out-of-breath due to their underlying health condition), hence monitoring for changes in the distance walked can be used to track progress.

Note: Due to only just starting ECP treatment, on the first day, one of the doctors needed to go through the consent process with me, which was largely just a box ticking exercise, and the ECP research team wanted the opportunity to briefly explain the work that they're doing, in the hope that I would be willing to provide regular blood samples to help with enhancing the understanding of how the treatment works, and by doing so potentially enable improvements to be made in the future. Over the last four years or so, I've been asked on a few occasions about doing this kind of thing, and have always done so (without hesitation), as it seems like the least I can do really.

Walking Test

For my first walking test, a nurse walked with me to show me exactly what route to take. The idea being that in future I could go by myself and simply describe to a nurse where I was when the two minute timer ran out; The nurse could then easily determine the distance, due to knowing the route all too well. For the record, I walked about one hundred and fifty metres, which works out at a little under three miles per hour. (It would seem from a quick google that I should walk about half a mile per hour faster!)

For various reasons, I couldn't help but wonder how meaningful the walking test will prove to be, as there are likely several things that influence how far someone walks, irrespective of whether the ECP treatment is working. On my first walking test: I hesitated a few times due to not really knowing where I was going, the nurse likely influenced what pace I walked (despite trying not to do so), and an ingrowing toenail meant that walking was a bit uncomfy for me. In future, the walking test will perhaps feel like a challenge too, i.e. there will be an element of wanting to set a new record. In other words, I'm not convinced that it will mean all that much, in my case at least, but then again maybe I'm guilty of assuming that the ECP treatment is going to work.

Medical Illustration

Walking test aside, there are also a couple of other methods used to track progress: lung function tests, and photos. My first lung function test is currently scheduled for the same day that I start the third ECP treatment; It would have coincided with the second ECP treatment, but the necessary staff are busy training on that day. However, my first set of photos could be taken straight away, hence, after the ECP treatment on the first day, I was guided to the medical illustration department for my first photo shoot!

Photo shoot proved to be a more accurate choice of phrase than perhaps any of us would like, as I had to strip-down to my boxer shorts, and do various poses, so that photos of my skin from head to toe (front and back) could be taken - It was even necessary to take some of the inside of my mouth, and, at one point, I also had to lower my boxer shorts for an ass shot! You'll be glad to hear, I won't be breaking into the glamour industry any time soon though! However, it is possible that one of more of those photos (with my consent) could end-up in a medical publication one day, so consider yourself forewarned! For now, lets just hope the NHS store them in a secure location; one where only my doctor is unfortunate enough to have to look!

One thing that does strike me about skin GVHD is that if you are quite self-conscious about your appearance, then you are pretty much doomed really: Putting aside that the skin GVHD itself makes your skin dry, red and flaky, the first line treatment is high-dose steroids, which comes with the side effects of weight gain and moon face, and if you then need ECP treatment too, you also get to look white from high-factor suncream and ridiculous wearing sunglasses when there's no sun in sight! Plus, if that wasn't enough, the medical illustration department are there to capture almost every inch! Speaking of moon faces, looking ridiculous wearing sunglasses, this one is mine:

Side Effects

Once the medical illustration department had done their part, I could finally find out how much the ECP treatment increased my sensitivity to sunlight, as I was free to go home. With the way that the increased sensitivity had been described to me, I wasn't quite sure what to expect really. Would it make me burst into flames, like something out of a vampire movie? Does it not make any noticeable difference really? Would I feel an uncomfortable tingling sensation, like I sometimes have previously? Well, I never noticed any difference. I made my way to the car, where I'd left the suncream and sunglasses, put them on, just in case it was a gradual thing, and that was that.

I was reminded that the ECP treatment might make me feel tired, and I was also aware that I might develop a mild fever, or notice my skin get slightly redder and/or itchier, but I can't say that I could attribute anything to the ECP treatment in the end. I did perhaps feel a bit tired, more so on the second day than the first, but that could easily be because I had an early appointment on the second day, hence I had to set my alarm to go off pretty early, in order to make it to my appointment on time.

A year in the life of a cancer patient

As you perhaps guessed from the title of this post, I thought that it might be interesting to look back over the treatment that I've had in the last year, as a way of remembering what the NHS has put my body through in the hope of finally eradicating those pesky Hodgkin's Lymphoma cells that seem to keep fighting their way back into my life.

Note: I should probably confess that it has actually been more like fifteen months since I found out about the latest relapse and restarted treatment, but it was just short of a year when I first started writing this post, and the title sounds more catchy as it is!

It was actually the sorting-out of my medications that started me thinking about the subject, as when being treated for cancer you seem to gradually build-up your own mini-pharmacy. In fact, after bringing home my latest prescription one day, my mini-pharmacy had reached capacity, so it was time for an annual stock-take to see whether anything had expired - I really needed to clear-up some free space. For your amusement, the following photo shows my mini-pharmacy at that time:

I think it's safe to say that the above nicely illustrates that taking a whole bunch of medication is a given for cancer patients. I'd hardly taken a tablet in my life, until I started with Hodgkin's Lymphoma four and a half years ago, and now I take that many every morning that with a glass of milk you could almost count them as breakfast.

Putting aside the medications that are mostly aimed at relieving the side effects of the cancer treatment, that still obviously leaves the actual cancer treatment itself, and in my case that's meant two sessions of the chemotherapy regimen known as IVE, five sessions of a new monoclonal antibody-drug conjugate that is only available on a compassionate use basis, the conditioning regimen known as FMC, and last but by no means least an Allogeneic Stem Cell Transplant (Allo-SCT). In other words, just to get my body ready for the Allo-SCT, I had numerous doses of five different chemotherapy drugs (Ifosfamide, Etoposide, Epirubicin, Fludarabine and Melphalan), a monoclonal antibody-drug conjugate (Brentuximab Vedotin) and a monoclonal antibody (Campath). In just under a week, I'll also be starting Extracorporeal Photopheresis (ECP) too, as it seems that I'm currently dependant on steroids to keep my skin GVHD under control!

The delightful cocktail of cancer medications and treatments has certainly done a number on my blood counts at various points, and that's led to the need for numerous red blood cell and platelet transfusions, as well as a whole range of other top-ups via IV, be that simply fluids when I've been struggling to drink enough or minerals etc when medications have prevented the absorption of sufficient quantities from my diet. (There's also been the occasional need for high protein and calorie drinks, when I've been battling loss of appetite or just struggling to keep my food down, and G-CSF injections to boost my immune system, when I've been most at risk of infection.)

Despite the best efforts of all the medications and processes aimed at preventing any bacterial, fungal and viral infections, I've still managed to pick-up eight different infections, four of which required being hospitalised for treatment. (I was also recently hospitalised for another suspected infection, but the blood tests never found anything.)

That nicely leads me on to the subject of testing, as being regularly zapped, swabbed, poked, sliced, and prodded are all things for which cancer patients get to look forward. I've long lost track of the number of cannula insertions, blood cultures/tests, stool/urine tests, MRSA and mouth swabs, and examinations that I've had, but if my memory is still serving me, I've had: two CT scans, three PET-CT scans, numerous x-rays, a Lineogram, three Echocardiograms, two Lung Function Tests, a Pericardial Drain, a Hickman Line insertion, two bone marrow biopsies, and two skin biopsies!

It light of all of that, it probably comes as no surprise that being a cancer patient means spending a lot of time in hospital. By my calculations, I've actually spent at least sixty-eight full days as an inpatient, which coincidentally is roughly the equivalent of the number hours involved in working a full-time job for a year. Granted, cancer patients do get to sleep whilst in hospital, despite what sometimes seems like the hospitals' best efforts to prevent it, but there's probably a few people out there that have managed to sneak-in the occasional daydream/snooze at work too!

In addition to the inpatient time, there's also all of the outpatient time, and that soon adds-up as well; With all of the appointments, clinics and treatments etc, it wouldn't surprise me if I've spent more time in hospital as an outpatient than I have as an inpatient. At this point, it's pretty much a hopeless exercise trying to put a number on how many hours I've spent waiting for tests to be done, results to come back, medical professionals to see me, treatments to be given, prescriptions to be dispensed, and paperwork to be completed; I've been back and forth that many times as an outpatient, for what have frequently proven to be long days, that it's mostly all just a big blur.

Finally, after considering all of the time as both an inpatient and outpatient, there's also the time that you get to spend outside of the hospital, where the various medications and treatments have left you feeling a mixture of exhausted, nauseous/sick and sore/in pain, amongst a variety of other unpleasantries. Occasionally, you do get to not look and feel like death warmed-up though, so don't get me wrong: It's not all bad!