The day after publishing my last blog we went on holiday, our bi-annual trip up to Scotland with our friends Michelle & Greg. We love Scotland it is one of our favourite places, very reminiscent of Canada but on a much smaller scale. The weather was damp but warm, and it was not as active as last time we were there, for me anyway, but we had a brilliant time as always, and we recorded our Scottish holiday song. Then after we got home, before I knew it, it was time to undergo my second PRRT treatment, closely followed by a school reunion.
First Scotland; so Friday morning I woke up with a sore stomach and I was not impressed, thinking brilliant this is all I need to get the holiday started in style, luckily a dose of painkillers and a cuddle of the heat pack before getting up calmed things down before it was time to leave. As we were going up to Eagle Brae again, which is in the highlands just outside Inverness and a good 10 hour drive with comfort stops, we started our journey on the Friday with an overnight stop in a little village called Carsie on the outskirts of Perth.
Keeping with protocol we met up with Michelle & Greg at Tebay services on the M6 for a late breakfast, although as they had the puppy (Willow) with them we ended up eating separately. Ade was also disappointed, as the farm shop did not have his Damson &Ginger jam, as he had been looking forward to taking some with him for the holiday, and Tebay is the only place we have seen it. It was one big adventure for Willow too as it was her first big car trip. We had decided not to take Buddy this time though as he we are still working on his recall, and he does have a tendency to get a bit over excited at the wrong time. Ok at home, but not so much in a holiday rental.
We had a good journey up on the Friday and things stayed calmed in the stomach department, and following a nice meal in a dog friendly pub in the evening, and a good nights sleep on Saturday morning I was feeling a lot better. After a good breakfast, and with time was on our side we decided to stop off at the Salmon steps again in Pitlochry, for a coffee and a stroll, there were a few salmon jumping about the reservoir, but unfortunately we weren’t lucky enough to see any using the steps on their migratory journey.
After a quick stop in Inverness for a food shop we arrived at our destination, as soon as we arrived we felt relaxed, it is so peaceful and tranquil, the scenery is stunning and it just felt like coming home. The weather was a bit cooler than last time, so the lads didn’t need any persuading to light the log burner as we got settled in and the evening meal underway. After a fairly early night we woke on Sunday to weather that was wet and a bit chilly, and there was a mist hanging over the Glen, but as it was a rest day after all the travelling we didn’t care.
Monday my stomach was a bit unsettled and I was feeling very weary and emotional, but after a chilled morning we went over to Nairn and had a wander along the beach, which helped to blow the cobwebs away. It was also Willows first beach visit and she loved it. Then when we got back the cabin the lads went out on a bike ride, and when they got to the other side of the River Glass they rang us to see if we could see them in the clearing from the veranda, as they could see the cabin. We confirmed that we could see two people on the other side of the river, and took photos to confirm it, the only thing was, it wasn’t them!! As they were so far away it wasn’t until we zoomed in on the photos that we saw what we had got, it gave us a good giggle when they got back. The following day though when they went out we did managed to locate them, eventually (there were a lot of trees in the way), and this time the photographic evidence confirmed it was them.
Throughout the week physically I was up and down, feeling tired a lot of the time and experiencing some discomfort. I continued to have bursts of energy followed by a completely flat battery, and I didn’t manage to get my walking speed back up to normal. As a result I missed the trip to Chanory Point to see the dolphins this time, but as I had seen them last time I wasn’t to disappointed, apart from the fact that there were more of them this time. I think though that missing out on the excellent breakfast at the Fortrose café upset me more… To make up for it Ade brought me some Lilies back, and got a bunch for Shelle too.
As I said at the start it was definitely a less active holiday for me this time, but I didn’t mind as it is just such a beautiful place to be. We also became hooked on the game of Articulate which caused great hilarity every night, and I’m talking sore sides and tears streaming from laughing. It is amazing what you come up with words wise when you are playing against the clock and your brain freezes!!
Then before we knew it our last day was upon us, so the lads went off fly fishing for the day in Glen Straffar, and we wen into the little town of Beauly with Willow to see the Priory followed by a lovely lunch before going to see how they were doing followed by a drive up through the Glen and a wander around the loch. Only a limited number of cars are allowed up there everyday, so it was lovely and quiet and the views were stunning, I am so glad we were able to see it, and we were also lucky enough to see the stag. We also managed to get our bi-annual song written and recorded, although this time we stayed inside to avoid the midges, but as the editing hasn’t been finished yet I put that into the next blog;-)
Coming home on the Saturday, we did the journey in one go with just a couple of comfort stops, and after unpacking the car and dumping everything in the hall we picked up Buddy. We had really missed him, and it was lovely to have him back with us, although he had had a lovely time with nan and granddad, and was we suspect spoilt rotten.
The Monday after we got back, as well as my fortnightly blood tests to check how my bloods are doing post PRRT I had a physio review for my left knee and back. My back is doing ok, but I was referred for an MRI on my knee and given some exercises, as they think that I have a slight tear in the ligament and possibly arthritis, the MRI will confirm it. I also have some inserts for my shoes and have to wear a knee support when walking if my knee is sore.
My specialist nurse Sarah confirmed that my bloods were continuing to recover well and my second round of PRRT treatment was confirmed for the 13thSeptember. As I need to take my injection in with me to be administered after the treatment I ordered a new carrier for it with some cool packs, it is actually a wine carrier, but a perfect fit for the big Lanreotide boxes, and I guess it will serve for other things too in the future if needed;-)
The Saturday before my PRRT we were due to go and see the comedian Dylan Moran in Crewe, and I was really looking forward to it, however my body had other ideas. We had decided to take Buddy for a good walk along the canal before we went, but about half way into it I started to feel ill. My stomach started to cramp, my head was pounding and my energy just went, I thought I was going to pass out. We managed to get back to the Wedgwood bridge where I had somewhere to support myself and Ade carried on home to get the car and come back to pick me up, and I can honestly say it was quite scary. Ade had to then help me out of the car when we got back and up to bed as I was like a wet rag, I was barely able to put one foot in fort of the other. After about an hour, some painkillers a heat pack, hot drink and some chocolate I started to feel better, but I was going nowhere. Boy was I annoyed, I had been so looking forward to it as we hadn’t seen him live for about 3 years, especially as I would soon be confined to barracks. Ade thankfully managed to find someone to go with him so as the tickets weren’t completely wasted though, once I managed to reassure him I was well enough to be left on my own once the worst of it had passed.
Then before I knew it was PRRT time again. As with my first round of treatment I went into the Christie the night before, Dr Manorharon the Consultant Nuclear Radiologist came to see me and introduce himself, and we had a little chat about how I was after the first round, he is very nice guy and very knowledgeable about his subject. I thought I would have slept better this time as I knew what to expect, but I didn’t and woke up tired and sore, then at 07:00am the battle to get cannulas in began. My veins were not playing ball this time and I had to have heat packs placed on the back of my hands, to try and encourage them to put in an appearance. Eventually after 3 tries they managed to get one cannula into the back of my right hand, the other two being left until I went down for treatment, which was what happened last time to.
After signing the consent, Steve came to collect me about 10:30 and take me down to the nuclear department, where the epic cannula challenge continued, my veins were just not up for it… The one in the back of my right hand also had to come out as they could push liquid through but not pull back, it was also starting to hurt which is not a good sign as it can indicate damage. Eventually they got a cannula into my left arm for the first bag of amino acid and the PRRT treatment, and a cannula into my right wrist for the second bag of amino acids, but had to concede defeat on being able to draw blood during the treatment, they had the best man on the job too, Ian, but it was definitely a no go.
Once treatment finally got underway the day passed in pretty much the same way as before; first 2 hours was aminos and PRRT, followed by my first radiation measure, scan and a mad dash to the loo half way through the scan. By this time my bladder was fit to burst, so Lucy very kindly went to guard the toilet door for me once she knew the first half of the scan was coming to an end, giving me a clear run along the corridor! The second half of day was spent back in the chair whilst the last of the amino acids did their job and we all had lunch. I was back in my room by 16:30, absolutely shattered, but I definitely slept better that night.
Friday morning when I woke up I was extremely tired, but at least this time I didn’t feel like I had been hit by a truck, which was a great relief. Dr Manorharon came down to see how I was and had a look at my hands, my hands and lower arms were already showing some nice areas of bruising, and he thinks that I may have fragile veins. So I need to make sure that next time I am as well hydrated as I can be. I also had my monthly jab, the nurse who did it hadn’t done a Lanreotide injection before, but she followed my in instructions and did a grand job, I didn’t feel a thing. Then it was time for my scan and radiation measurements, where I was cleared to go home.
I slept most of the weekend, and felt sick a lot of the time, I also need to take a lot of pain meds and spent a lot of time hugging my heat packs. Same as last time I had the horrible metallic taste in my mouth, and I was eating a lot of boiled mints. Monday after my visit to the Christie for my scan and radiation measurements I needed to get a prescription for some anti-nausea drugs. Nausea was hitting me big time this time and they were a godsend, in fact I was very surprised by how affective they were. I was feeling very down though, which isn’t really surprising I suppose as the body is under attack from a massive blast of gamma radiation, in retrospect when I think about it feels very like post baby blues. After my scan and measurements on the Wednesday, I got my release dates which were two days earlier than last time, so it looks like my body was getting rid of the radiation quicker this, and the readings we were taking at home also confirmed this. Although we didn’t take them as regularly this time.
By the Saturday I was starting to feel more like me again, the pain persisted but the levels were reducing and a lot of the time I could control it with a heat pack, rather than constant medication, I even managed to bake a cake. Although I did have a relapse in the early hours of Sunday morning, and I had to throw all my ammunition at it, including a bath as hot as I could stand it, I also needed Ade to help me in and out. I know this is as bad for him as it is for me as physically there is very little he can do, but he truly is my knight in shinning armour, as well as being my best friend and soul mate.
Needless to say I spent most of the following Sunday in bed, but we did get a visit from our grandson which always brightens the day, and he was on top cheeky form. Chattering away all afternoon, and giving out lots of hugs as well as making sure he got his share of the cake!! Monday I felt a lot better, and as the week went on I could feel my energy coming back, pretty much like last time, burst of energy then flat battery, but the bursts are definitely getting longer. Although I decided not to push it as I had a busy weekend coming up which included a school reunion and my oldest sister’s 70thbirthday celebration.
I made the reunion on the Friday night, there were only a few of us but we had a good night, it was lovely to see everyone and catch up on what everybody was up to, it was hard to believe that 40 years has passed by since we left. It just a shame we didn’t manage to get a group photo, but there was just to much talking going on. Unfortunately though I couldn’t make the birthday celebrations on the Sunday for my sister, my body had other ideas which mainly involved sleeping with my trusty heat-pack and painkillers, but hopefully we will get to see her soon to make up for it.
I also had a catch up with my consultant to discuss how I was feeling, and I will be having a CT and MRI towards the end of October with another consult to see if there has been any change following the first two treatments. Then if my bloods are OK I should be getting treatment number 3 around the 8thNovember, so fingers crossed on that one. In anticipation of this I have moved the date of my NETs coffee morning forward from the 10thNovember to the 3rdNovember, so if you are in the area and fancy calling in please do. We will be at St John the Baptist Church on Station Road, Barlaston ST12 9DA, between 10:30am and 1pm. Morrisons supermarket have very kindly sponsored us again, and there will be a tombolo and a second hand book stall, with all proceeds going the to NET Patient Foundation.
“I’m not afraid of dying, it’s time I’m afraid of…” Interstellar 2014
Kath Lewis 