I was lucky to be able to get all of my check ups scheduled on one day, so although it was busy I get it all done in one go. I arrived for my CT scan at 10am and was finally ushered in to get my cannula at about 10:35 (they do tell you to arrive earlier than they want you as it stops delays). I hadn’t seen this nurse before so I warned her about my veins – I often have problems where they have to soak my arm in hot water to find a vein or they attempt to use the preferred one and hit a valve so they have to try again. I sometimes come out looking like a pin cushion. I was very impressed by her ability as she was straight in – she is a superstar. I went back to the waiting room then was called for my scan about 10 mins later. It was as painless as usual with the first scan, contrast dye injection then second scan all in about 5 mins. I had the cannula left in so that they could use it to take the blood samples that they needed later.
I headed to dermatology next. I’ve been seeing the same doctor for about 4 years now and she really is a lovely lady. After a warm welcome I was told how great I look – I’ll always take a compliment! I mentioned that I had a redish mole on my right arm that I didn’t think had changed but I hadn’t had it checked for a while. The doctor decided to give me an all over check and said everything was looking fine. She said my legs looked really good – keep the compliments coming! We had a bit of a laugh over this as what she actually meant was that I was previously suffering quite badly from so many skin problems (I had them photographed a few times for the trial) and that it’s great to see me ‘back to normal’. She attributed some of this to the fact that I carried on doing thing I like, such as travel – I’m still trying to get holidays on the NHS. I had recently been told that I could get SunSense sun screen (the one I use as the dematologist recommended it) on prescription. I asked about this and I was given a prescription for some, which is great as one bonus of being a cancer patient is that prescriptions will forever be free for me. I filled this at the pharmacy – outpatients is now run by Boots… they get everywhere!
Next stop was the blood room. I had been given my forms on my last appointment, I took my ‘supermarket deli counter’ style ticket and I luckily only had to wait about 5 mins (sometimes this can be over an hour). I was seen by one of the ladies who I have gotten to know very well over the years. Going weekly means that you make many friends. I was greeted by name then had to confirm my name for the official procedure – a routine that always makes me laugh. I reeled off my name, date of birth and hospital number then we set about the important stuff – what we had done for Christmas and where we were due to go on holiday. My first blood vial was discarded due to having had the contrast dye through the same cannula, then I had 4 more taken. We chatted some more whilst I was being patched up then we said our farewells until after Easter.
I was now free to go and have lunch. I was fed up with the 2 local pubs that I knew so googled a new one. I found the Builders Arms (unfortunately no builders with good arms in there) and was pleasantly surprised. I was also annoyed that I hadn’t found this place before! After a satisfying lunch and a small amount of wine (enough to take the edge off but little enough to still be able to talk seriously about any issues at my clinic appointment later) I headed back for my next installment.
This time I was off to the Lymphoedema Clinic. It was just a check up again and I had my arm volume measured. My left arm is 16.5% bigger than the right. It was only 11% last May. I’m attributing this mostly to muscle growth as I have been going to the gym a lot in order to get fitter and healthier. The nurse told me that I need to cut back on my arms weights and should lift no more than 5kg per arm. Results have previously been contradictory so I didn’t know what to do for the best. Apparently they have now decided that lifting heavy weights makes more blood flow to the muscles and increases swelling. I will bear that in mind and see how I go. We taked about my glove and sleeve and the nurse thought that I could do with a glove that had stronger pressure. I now have a new one and a prescription to get more. The back of my hand is often the most noticeable when it’s puffy so I was happy to try to combat that. I also mentioned that my legs swell a lot when I’m on holiday and that I knew some of it was down to Nephrotic Syndrome. I know that I need to keep my feet up and have as little salt as possible, but that’s not always so easy when you’re away and eating out. I was given a list of leg exercises that they give people with leg lymphoedema so that I can try incorporating them into my daily routine. It’s worth a try. I was told that as nothing much was changing with me, I would be seen again in a year. Fine by me!
The last appointment of the day was the most important. I waited for my clinic appointment where I would be told the results of my scan. I was pretty confident of good news, but you can never be sure… There was an interesting bunch in the waiting room – it’s always busy for that clinic so can provide good people watching opportunities. There were a couple of cute guys – this was new! It never happens!! One was probably with a partner (or sister?) and it turned out the other was there for his Mum (I wasn’t stalking, but he got up as part of a family group when a ladys name was called). There was a guy who I’m going to say, rightly or wrongly, was a chav. He asked his partner for a mirror and hairbrush so that he could perfect his rather short, full head of hair. Seriously?! We were in a room filled with cancer sufferers in all stages of their disease and he cared how his hair looked for that particular group of people?!? I have seen someone in the past turn up with a full tan – not something that is appreciated / admired by a group of melanoma patients… There was also a guy who walked in with a scarf over his nose and mouth – it’s not bloody contagious! Moron.
Anyway, I digress. There was an announcement that the clinic was running 35 mins late. I checked the time and was leased to see that in theory, I would be seen on just over 5 minutes. To be fair, I was called in 10 minutes and shown to a room to wait for the consultant. Shortly afterwards he entered the room and introduced himself, so I told him that we had met a year or so back which he then recalled (apparently). I was told that my scan showed the same results as last time (and several before) which was great news! I had felt fine, but you never can tell… The scan also showed that I have a lower back issue, which I was already aware of. The consultant said that it was common with women who have had kids, then asked if I have any!?! It was nice to see how familiar he was with my notes and it was also interesting to see what he was getting at – was he saying that I had wide hips or that I was carrying extra weight?? Rude! I had a little joke about this then we got back to cancer related issues. I was informed that all indications to date have shown that those who have made it to 2 years after being given Ipilimumab have never needed any more treatment. I couldn’t believe what I was hearing! Apparently I seem to be on course for never needing any further treatment and to remain with a stable few small cells. I took this information with a pinch of salt as there are still only a very limited number of people who have had this treatment and the trial began around 8 years ago. Who knows if the larger the group of patients gets, what will turn out to be the norm. Also, 8 years isn’t “forever” – what will happen after more time passes? It’s great news – almost the best that I could ever have – but I can’t allow myself to believe that my disease will be managed permanently for self preservation reasons. I can enjoy the fabulous news for now, but will always have a slight degree of doubt in the back of my mind.
I called my Dad with the great news and we had a laugh about how I will now definitely need to figure out my cash flow for the long term instead of splurging all of my savings over the next couple of years! I contacted several friends who were very happy about the news. I felt like I was walking on air (how I usually feel after a good scan result) but even more than usual. I was glad to be meeting a friend in the evening so that we could celebrate with bubbles! The celebrations will be continuing at least all weekend!
I Am Titanium 