7 years and 100 butt jabs later I am still here, who would have thought it. Definitely not me…
I have been very lax with my blogs, and I am sorry for being quiet for so long. I have posted a few articles that I have written for Neuroendocrine Cancer UK (NCUK) with a focus on how living with a cancer diagnosis can effect us. There have been many times where I have been full of good intentions to sit down and get writing about my day to day. However, thoughts and actions were not quite meeting up. In the early summer just after my 7th cancerversary I even got my notes done, but still the will to actually sit down and pull them all together was lacking.
I don’t know about the rest of you, but I have found the last two and a half years quite difficult from a mental health perspective, especially when it comes applying myself properly to doing the things I normally enjoy. Being a very social person, I felt that the isolation of covid has slowly sucked the life out of me, I am sure many of you will relate to this. Partly I think because of the element of fear that went with it. So it is nice to now see things slowly getting back to normal, and feeling that you can do something without having to do a massive risk assessment every time you contemplate stepping out of the front door. Family, friends, my fellow NCUK ambassadors and the NCUK charity and regular natters helped keep me going, but still life has not been quite right. I wish I could explain it more clearly, but I can’t other than sometimes I feel like I am lost in a maze.
Following on from this, even though I have been quiet, it has been a fairly busy year, and I did achieve one of my life ambitions with friends and family aka the “Rambling Potters” by doing a charity tandem skydive in September 2021 as part of a national fundraiser to raise funds for NCUK. WOW, what an experience. I know it is not everyone’s cup of tea, but we all enjoyed it immensely, whilst making a nice amount of money for the charity. Thank you to the skydivers who looked after us so well, and those of you who kindly sponsored us🤗. As well as some pictures below, there is a link to a video of me riding the breeze if you would like to see it!! NCUK Sky Dive
For me there was a small price to pay, as I was not very well for a couple weeks afterwards, which I put down to the massive adrenaline rush. Who knew that an adrenaline rush could have such consequences for a person with this type of cancer, obviously not me, I didn’t give it a second thought… But I can honestly say it was worth it, and it is something I would definitely do again if it wasn’t for the after affects. At least I can now tick it off and say I have done it.
We did manage to have a more or less proper family Christmas too, as in most of us were around the Christmas table, unfortunately our oldest son couldn’t make it due to COVID having raised its ugly head again just before the start of the festive season, in fact it felt that it was getting to the stage of who do we know who hasn’t had it, rather that who has it. We did succeed in a New Years day get together to make up for it and finish the present giving, although the annual New Years Eve party had to be cancelled.
The best start to the New Year though, was that the boys were finally able to get married in Austria in mid-January. It was a lovely wedding in a beautiful setting, 2 years later than planned, but we got there in the end. We were a small group of family of friends, but had a great time, howeverAustria’s parting gift was a dose of COVID for everyone in the party apart from from our son who had got it out of the way at Christmas. Catching covid was not part of the plan, although we knew the risks with the winter strain, but at least it was after the wedding, we followed all the rules but it still got us.
My 60th birthday was 2 days after we got back, we had plans, but it was not to be. All celebrations were put on hold, but Ade managed to make it special even though he was poorly himself. He ordered food and champagne online, cooked it all and even made a fancy menu🤗 He even found the energy to put together my new sewing table and chair. He pulled out all the stops, it wasn’t pleasant, we ached, we slept, a lot, but I dread to think how bad it could have been if we hadn’t been vaccinated. It was definitely a birthday to remember😬
In mid-March I went out with the girls for a birthday afternoon tea, and in late April, Ade and myself had a lovely short-break in the Wye Valley, at Symonds Yat, courtesy of a wonderful small charity called “Something to Look Forward Too”, which specialises in gifts for cancer patients. It coincided with my husbands birthday, we stopped at the “Ye Olde Ferrie” in, with a river room view, the weather was great, and we even managed to go kayaking without drowning each other!!
In June we went out with all our friends for a postponed birthday meal, followed by karaoke back at ours afterwards. Then in August I was off to Sorrento with my best friend Bridgette, it was our 60th birthday present to each other. We were both desperate to see Pompeii, that was our main objective, which we achieved by ourselves without a tour guide. Boy was it hot though, literally too hot to move, and I am a shade lover, also whilst we were there they experienced the worst storms they had seen in 60 years (very appropriate), which made it difficult to get out and about to explore, especially in the evenings. The hotel restaurant got flooded on one night and lost all power, we were delayed going out and coming back, and arrived home minus our luggage. It was definitely a holiday to remember, but despite it all we had a good time, but we have both agreed that we are never going anywhere near Naples airport again. EVER.
Just a week after we got back, and our luggage was returned, I was off on our annual Scottish holiday, dogs included, of which there are now 3. This year we were back on the West Coast, in a lovely spot called Kyle near the Isle of Skye. We had a lovely cottage, which looked out directly onto the loch, with lots of local wildlife in the back garden as well as a nightly visit from the badger family. It was a beautiful spot, dogs and adults were in their element. I can honestly say Scotland never disappoints, and our hosts Paula & Rob were lovely. The only disappointment was that boys Talisker whisky distillery tour on Skye was unfortunately cancelled due to drain problems. But Ade did manage to get to the distillery shop for some whisky!!
Then it was time to come back down to earth again, with scans and results on the horizon. Health wise it has been a tiring year, just before the wedding I was struggling again with pain management as well as constipation, the constipation has been an intermittent problem since PRRT. So it maybe wasn’t such a bad thing that Christmas had been quieter than we generally would have liked, I was also panicking in case it meant missing the boys wedding. Thankfully my Macmillan nurse came to the rescue and got my pain dosage sorted, as well as something to help me go, she even delivered my prescription when I couldn’t get out for it, she was a real star. At the time I was so bloated and sore I had even bought maternity trousers for travelling, I couldn’t get anything else on😒
My scans and results in March showed everything was all stable, but as the months went on I was still struggling with really bad fatigue, lightheadedness and really bad cramp in both my hands and feet. Following blood tests to check my levels I was put on the folic acid, the GP said she had never seen such a low reading, and my iron was also low so I was prescribed that as well. After a few weeks I did start to feel a bit better, now it seems to be slipping again.
Septembers scan results are all good, and there is another reduction in the tumour on my peritoneal wall, 0.2mm, but hey, I will take what I can get, and 4 years down the line the PRRT is still doing it s job. The hospital bloods were all good, and the GP has rechecked my other markers, Folic and iron are back to normal, but for now I have to stay on the supplements with regular tests to track levels. I do wonder if COVID has played a part in this.
The main thing is though, I am still here and living my life the best way I can, and long may it continue. After all I still have another birthday celebration with family to attend, sorry to go on about it, but I honestly didn’t think I would make 60, so better late than never I say😉
“I’m not afraid of dying, it’s time I’m afraid of…” Interstellar 2014