Hi everybody, another big gap I know, but hopefully I am now getting back on track. Since I last posted we have had the Christmas holidays, celebrated a new Year, I have had my 4thPRRT treatment, and celebrated my birthday. Which by the way was my 4thbirthday since my diagnosis in June 2015.
So, after my last blog, the Christmas prep started with a vengeance, the house was clean, the decs were up, the shopping was done and the presents wrapped. You know the sort of thing;-) We also had a Karaoke party planned for the Saturday before Christmas, we had such fun last year at the one we did for New Year that everybody wanted to go again; and as the stuff was still all set up in the conservatory, why not …
Unfortunately though we had to cancel, the aftermath of my 3rdPRRT treatment continued played havoc with my insides, and I mostly spent the weekend before Christmas in bed. Thankfully, by Christmas Eve I was feeling better, but knew I had to take it easy. My sous chef (aka our oldest son) and his partner arrived early evening and we got the veg ready for Christmas day, I also made a gluten free Mac & Cheese with chorizo for tea, our youngest son arrived from Leeds and we all sat down to eat whilst watching our Christmas film ‘Love Actually’. That officially marks the start of the Christmas celebrations in the Lewis household.
We had a full house for Christmas dinner, although our nephew Joe missed the meal as he had to work. So we plated up his dinner for when he arrived later with the obligatory brussel sprout, which he can’t stand!! He didn’t stay long though when he arrived as he was full of a cold, and after a busy day at work just really wanted his bed, can’t say as I blame him. Arthur on the other hand was full of himself, this year he properly understood what was going on, although I thing he had the most fun being pulled along the floor behind the dog between the living and the kitchen. We weren’t complaining as it tired the pair of them out.
Arthur and his mum & dad were sleeping over, so after our Christmas day game of Buzz on the Playstation when everybody had gone home he went happily off to bed and the rest of us collapsed on the settee with ‘Cards Against Muggles’. Which I might add, Ade and myself found much more fun to play than ‘Cards Against Humanity’.
Boxing day I was tired and needed to keep the pain relief topped up, but managed a walk with the dogs in the afternoon with the Moran’s, after which Ade & Greg watched the football whilst the dogs continued to run around the house like mad things. That night and the next day Buddy was fit for nothing, which was fine with us!!
We had re-arranged the Karaoke for the Friday after Christmas, my stomach continued to remain unpredictable but manageable, and on the Thursday I made a big pot of chilli. I find it always tastes better for being left to sit for a day, well that’s my opinion anyway! We had a great night, but later in the evening I had to make myself scarce as my stomach started to kick off, I was not impressed, whilst everybody was having a good time I was holed up on the settee downing painkillers and anti-nausea medication, whilst hugging my heat-pack. The only saving grace being that nobody was subjected to my singing.
As a result I had a quiet weekend so as I was hopefully fit for the New Year’s Eve party at Don & Jan’s, and then I nearly didn’t make it as things were taking their time to settle. I had also opted to drive as I was off the alcohol prior to my next treatment, and as I was tired didn’t want to be out to late. We had a good night as always, although I did panic Ade and his brother a bit as just after celebrating and singing in the New Year I disappeared, or so they thought. As it turned out I was behind the curtains in the living room watching the fireworks and talking to Steve’s wife who had just completed her own treatment for breast cancer. They thought I had felt bad and taken myself off somewhere, needless to say I got a bit of a telling off, oops!
Then before I knew it the 3rd January was here, and it was time for PRRT treatment no.4. To say I was nervous was a bit of an understatement, I knew it had to be done, but 3 had been such a rocky ride I wasn’t looking forward to more of the same. My veins decided they weren’t playing again either even though I had made sure I was well hydrated. In the end we had to make do with two cannulas, but I had my original team with me every step of the way, and by 4pm we were all done and I was back on the ward. I had opted to stay in this time due to my stomach being so bad after no.3, thankfully everything behaved although I was super tired next day, slept in the car on the way home and went straight to bed when we got in.
It was a painful and unsettled first night at home but nothing compared to last time, I managed to keep things under control with my meds. If nothing else, treatment no.3 taught me not to let the pain develop, as soon as it starts medicate. I was in and out of sleep most of the weekend and when I wasn’t sleeping I was reading. On the Monday and Wednesday I had my final PRRT scans, and I was very sad saying goodbye to the team.
I cannot thank the team at the Christie enough for the way they looked after me, they helped to make my journey so much easier, were always happy to answer my questions both during and after each session and are the real stars of the show. So thank you again Lucy, Steve, Debra, Gill, Dr Hubner, Dr Manorharan, Dr Chander and Dr Westwood and my specialist nurse Sarah. Also thank you to the rest of the team whose names I do not have, you all make it so much easier to bear.
As the time passed, the fatigue continued and my stomach simmered away, I liken it to a pan sat on the stove over a low heat, but I am feeling better in myself. I wish I could find the words to explain how I feel better but I can’t. I am also happy to report that this time has been a lot easier, the fact, that I haven’t experienced the chronic pain incidences that I had after treatment 3, which as you can imagine is a great relief. Yes there are days spent in bed, or on the settee hugging my trusty heatpack, and it does wear me out when it happens as sleep can be a bit elusive at time but the pain has been manageable, which makes a massive difference.
Two weeks after my treatment I came down with a cold, this was hardly surprising though as Ade had been full of one since New Year. All in all I got off pretty lightly, it lasted a few days and was gone, which is just as well as I can’t take night nurse or anything like that as it upsets my stomach big times. It just isn’t worth the risk. It was gone for my birthday, which was the main thing. The day itself was very quiet, but I got spoilt rotten. I had a lovely new kindle, which is backlit, so I can now read at night when I can’t sleep without disturbing Ade. I also got a big bunch of tropics goodies and a lovely Zebra bowl, as well as being taken out for a nice birthday meal in the evening with my hubby. We usually go out with a group of friends too, but as it was so soon after my treatment I decided to just keep it low key, as I wasn’t taking any chances.
The weekend after we had Arthur for a sleepover too, so as his mum and dad could go out for dad’s birthday, which is the day after mine. When he arrived he was bright green and dressed as the hulk, having been to a birthday party, he took a bit of scrubbing in the bath that night, so did the bath after, and boy can he talk, I swear he is only quiet when he is asleep. He had so much tell us when it was bed time, the avoiding going to bed tactic which is as old as the hills, he fell asleep talking and just picked up where he left off when he woke up. We had great fun with him.
In February I was back at the Christie for CT and MRI scans they had a new drink for the CT, I didn’t like it, there were having trouble getting hold of the usual one. I hope that next time it is back, I found it truly disgusting. I will get my results at the end of the month, and hopefully the PRRT will be doing what it is supposed to. So fingers crossed on that one.
My friend from work Teresa came over for a visit and a catch up, I had had to cancel our lunch before Christmas, as I was unwell. The added bonus being belated Christmas presents for both of us and birthday presents for me, we also re-arranged lunch, although I am sure she is more interested in seeing Buddy than me sometimes;-) Buddy had his 3rd birthday on Valentine’s Day, his 2nd with us, and I also finally got around to sorting out the sponsorship page for our annual sponsored walk for NETs. Usually we do the walk early in the New Year, but moved it back due to my treatment. This be our 4thyear, so if you would like to sponsor us in our fund raising efforts this year for the NET Patient foundation, this is the link for the ‘Rambling Potters Annual Walk for Neuroendocrine Cancer’. We will be walking around the Wrekin on Saturday 6thApril.
Then we had a first for both us and Buddy, a doggy sleepover. His mate Willow came to stay for the night as Shelle & Greg had a family party that was away. The pair of them were very boisterous and hilarious, and when they were fed Willow wouldn’t eat out of her own bowl. So I fed Buddy first and then put her food in Buddy’s bowl a bit at a time and this is what happened. He sat and watched her, she would step back leaving a few small pieces of kibble for him, and then have the next lot. Afterwards they played tug of war, she may be able to out run him, but she cannot out pull him. Buddy would let her pull him around the living room then sit down in his basket when he’d had enough, she couldn’t shift him no matter how hard she tried. They definitely tired each other out, and it would seem that for the majority of time Buddy lets her think she is the boss. It was also like a proper kids sleepover too, as at 4am in the morning Ade had to get up and tell them off for racing up and down the landing!! To be fair though they did go back to sleep and left us in peace until about 7:30am, when Buddy’s hunger got the better of him.
The following weekend we took him to the beach, which is as far as we know his first experience of the beach. We went to Crosby Beachwith our friend Tim and his girls Immy and Tilly, and his dog Binky as it is a dog friendly beach. At Crosby you can also see the Anthony Gormley statues scattered around the shore-line, it is quite a site to see, and Buddy loved the taste of the barnacles that had attached themselves to the statues. He did not mind getting wet, but didn’t want to swim, and would not pick his ball up out of the water. Luckily Binky had no such problems, and was more than happy to act as ball boy. Buddy loved it as we could let him off the lead, there were lots of friendly dogs to play with as well as balls to chase. We also found a great dog friendly café, The Crosby Tea Roomswhich was did gluten free too, by the time we got home he was well and truly shattered.
Then this week went to see my best friend in Barrow-in-Furness for a couple of days. Although she has been down to me a good few times, it was my first visit back there since my diagnosis. It is hard to believe that it is over 20 years since I left. As she was dog sitting we went over to Walney where we both used to live to walk Reggie on the beach, it’s a lovely small island connected to Barrow by a single road bridge. Make no mistake though, the only thing that connects Walney and Barrow is the bridge, other than that they consider themselves to be completely independent of each other. Reggie by the way is Bridgette’s youngest daughters labradoodle, he is a real sweetheart and I would have been quite happy to bring him home to play with Buddy🐾🐾🐶
Finally, I thought I would finish this blog with a book recommendation for all you readers out there. Last year, I amazed myself and read 31 books, and apart from one I enjoyed all of them. However, my first book of the year I read in a day, which never happens, I just couldn’t put it down. Mind you being confined to quarters after my PRRT probably helped. Anyway, the book in question is ‘The Tattooist of Auschwitz’ by Heather Morris, it is based on a true story, and is both a love story and a chronicle of the horror that was Auschwitz.
“I’m not afraid of dying, it’s time I’m afraid of…” Interstellar 2014