Greetings dear readers, good to see you again (I can’t actually see you, don’t worry). A lot has been going on in the past few weeks so I thought I should update you on a few bits and pieces as a few folks have been asking questions. Firstly, we went to Mexico for a ‘family moon’ and it was officially hot. Yeah, Lymphodema in 40 degree heat is no picnic unless you’re reading this through the eyes of a mosquito which is, frankly, a distressing notion. I mean, if you were a mosquito and you’d sated your thirst for blood would your next item on the to-do list be to check out an obscure blog about living in and around cancer? Possibly but I reckon you might feel like a bit of a lie down first. Anyway, one night those nibbly little bastards went to town on the back of my leg and when I awoke my ankle looked like someone had fused a large, angry looking raspberry to me which is just what you want when you’re trying to sashay sexily around Mexico.
Fortunately, one of the delights of living with Lymphodema is that any trip abroad has to be accompanied by enough antibiotics to make customs a slightly sweaty experience. Antibiotics are there in case of a flare up of cellulitis which is what the giant raspberry was, caused by my lymphatic system not being able to draw the infection away from my skin and out through my urine. Still, a couple of days drinking Corona, soaking in the pool and watching CNN round on Trump got me back in the game. On the positive side, we swam with dolphins, met some monkeys, held some snakes, climbed a Mayan pyramid and ate a butt-load of Tacos without anything else bad happening so small mercies and all that.
Since returning to the UK, however, things have been slightly less fun. Regular readers will remember the word Sarcoidosis popping up in a previous blog and although that was good news when it came to my lungs but there were still the relatively crucial elements of the heart and pancreas to look at. First up, I was invited for an Echocardiogram (ECG) at a place called Ultra Cardiac – a title that meant I wasn’t quite sure whether to turn up in normal clothes or clad in Lycra ready for a serious work-out. On arrival, I immediately regretted my Lycra decision but after a quick change in the toilets I was ready to lie on a clinical couch naked from the waist up. Again.
One of the strange things about small medical rooms is that at some point the universal decision was made to stick a tropical beach image on the wall to make you somehow feel better and take your mind of the fact that yet another stranger is rubbing jelly on your belly and poking you with a Ultrasound scanner. Personally, I’d rather have a Where’s Wally or Magic Eye Picture to stare at but it’s better than staring at a plain white all I suppose. Once again, I was left feeling like I’d had a strange one-night stand when the nurse ripped off a length of blue cleaning paper and instructed me to take my time “cleaning myself up” as she left the room. I kinda wished I’d kept the Lycra on after all for it’s wipe clean qualities.
The next day I had an appointment with a Pancreatic consultant who, after arriving half an hour late, opened with the reassuring twin opening lines of “The systems are down so I haven’t seen your records” and “Do you know why you’re here?”. A short potted medical history later, the consultant proceeded to tell me that I might need to have the most serious operation that the Pancreatic surgeons undertake which would involve removing part of my Pancreas, part of my Gall Bladder (good luck with that) and another organ before manually reattaching the connecting tubes manually. This operation has a 30-40% of failure and is, in his words, a life changing procedure. All this from a man who didn’t know why I was there and hadn’t read my notes. Imagine being able to do that with your job, “Good morning Miss Jones, well I haven’t looked at your car and I don’t even know which one it is but it’s failed the MOT” or “Ah, Mr Tomkins, I really don’t know who you are or what your earn but your house is being repossessed as we speak”.
The look of incredulity on my face and lack of a reaction seemed to force the consultant’s hand in to heading back into his office to see if the system was working. It was. He came back much more positively than his initial entrance and stated that the marks on my Pancreas could be one of three things;
- Pancreatic Cancer – unlikely as these marks had emerged over a period of months and Pancreatic Cancer develops really quite quickly. One down.
- Melanoma spreading to my organs – also unlikely as if the Melanoma had survived the removal of my tumour and 4 weeks of radiotherapy it probably wouldn’t make a beeline for my Pancreas (the least sexy of all the organs) and ignore everything else. Two down.
- Sarcoidosis – Probably the eventual outcome but there’s only way to find out…so close to the hat-trick.
Now, I know what you’re thinking, what’s the way to find out? Well, that brings us bang up to date and my most recent medical appointment. So, I’ve had plenty of CT scans before but the addition of PET to the front of that acronym takes things to another level. A PET-CT scan is one of those where you aren’t allowed to eat for 6 hours in the build up and then you are forced to sit in a soulless waiting room with nothing to look at by the pile of delicious looking biscuits and free hot drinks that you can’t have until you’ve been through your ordeal….I mean scan. The scan in question requires a canula to be fitted which is pretty standard but the nervous nurse decided to try fitting it in to a vein somewhere near my elbow which was new.
All was going well until she tried to flush the line with saline solution and my arm started to expand (for the uninitiated, that isn’t supposed to happen), swiftly follow by “oh, that’s not good” from the nurse. Needless to say, the second attempt was a far more shaky-handed affair (hers not mine) as she fitted the canula into the back of my hand, a far more traditional method. I remained calm, staring longingly at yet another tropical sunset scene adorning the wall of the cubicle. Seriously though, imagine having a phobia of sand (ammosophobia), palm trees (dendrophobia) or tropical islands (insulaphobia) – you’d be in a state of high anxiety before they brought the needles out. I think a big calming picture of Terry Wogan’s face or maybe a calming windmill would be better (apologies for anyone scared of large Irish faces or milling).
Anyway, there was an added twist this time as once the canula goes in you then get the delight of being injected with a radioactive tracer that takes an hour for your body to digest. Before I got the good part, however, the six of us eagerly awaiting this treat in the reception area were told that the man delivering the radioactive material was stuck in traffic and if he didn’t arrive in the next half hour then 3 of us would be sent home. This was due to the fact that this material degrades quickly and once it’s half life is reached then only half the patients can be injected – these are the kinds of small, potential set backs that really cut at you like 1000 paper cuts, insignificant on their own but as they build up they can become something far more painful and debilitating. Fortunately, the delivery guy arrived in the nick of time and I got to see a man in alarming looking garb inject my blood with radioactive material.
The procedure itself is fairly non-descript, 45 minutes of lying down and being passed through a large hoop with your trousers down. In fact, so mundane was it that I fell asleep and only woke up when the machine made a cheery alarm and within 3 minutes flat I had my trousers back on, my metal belongings back in my pockets and was scarfing down custard creams and a hot chocolate like man possessed. By hunger. Which I was. Despite a brief search of the car park, I couldn’t find any insects to bite me or for me to bite other than a slug and I didn’t fancy becoming Slug-Man or creating the evil Mega-Slug.
Normally, at the end of these blogs I try to tie things together with something pithy and meaningful but right now I’m not feeling that wise. There’s a piece of information at the end of the PET-CT scan that says for the next 8 hours you can’t go within 5 feet of anyone under the age of 18 or anyone pregnant. Now, I don’t know about you but when I’ve had 6 hours of not eating followed by 4 hours of being injected, scanned and made to feel grateful for a custard cream then the one thing I want is a big hug from my little boy at the end of the day – he gives the best hugs. That night, however, I stand in his bedroom door and wave goodnight while he cried in his bed. I’ve said it before and I’ll say it again, cancer chips away at you whether you’re physically or mentally suffering from it but when it takes away your chance at a simple piece of happiness at the end of the day then it gets personal. For now, I have a butt load of medical appointments booked up for the next 6 weeks and I’m waiting on all kinds of results but I’m in good hands – specifically the hands of Oncology, Plastic Surgery, Dermatology, Ultra Cardiac, Allicance Medical and let’s not forget the Royal Eye Infirmary. Gotta catch ‘em all.