Well it has definitely been a listless few weeks, sleep is still very hit and miss, mostly misses, in that I am experiencing a lot of it broken sleep. I am not to sure if my unconscious mind is playing games with me but it is definitely hard to switch it off. I wonder if it may to some extent be due to the fact that I had my PET scan and liver MRI just after my last blog, it was a very long day. Not a hard day just a long one with my PET scan in the morning and my liver MRI at the back end of the day. To add to this the journey home was a nightmare as well, it was a dark and wet night with a snarled up M6, and even with a detour it took twice a long as normal to get home, and then I had to have my monthly injection when I got in. Results day is 7th December, so fingers crossed on that one.
The following day was NET cancer day, and there was lots happening to raise awareness on social media. I had recently been introduced to a lovely lady Trish by Kevin who runs our local NET Natter group, Trish had been in contact with our local BBC radio station (Radio Stoke), and the local paper (the Sentinal) to try and get some media exposure and they wanted patient stories. Trish’s husband had been diagnosed with aggressive NET at Stoke 3 years ago. Unfortunately though even though we submitted what was asked of us we had no follow-up or feed back. This was dis-heartening to say the least, we had hoped originally to get something out on the day itself, then decided we would settle for some coverage during the month of November. In the end we gave up, and decided that we would try again in the New Year.
On the 12th November we drove up to Durham for our anniversary weekend, it meant missing the NET Natter, which was a shame, but the drive was to long to enable us to fit it in before we left. It was a first visit there for both of us and we loved it, Durham is very compact and easy to get around, there are a few hills, not to steep though. It was also a great place to eat, especially for someone like me who is gluten free, and not by choice. On the Sunday though I was awake just after 5am, with stomach cramps, bloating and the rest, to say I was upset is an understatement as it was our anniversary day. Thankfully it did not turn into an epic like the weekend before and I was up and about for around 11am.
We went out for a very late breakfast and luckily caught the back-end of the Remembrance Day parade as they marched down from the Cathedral to the war memorial in the town square. Following a gentle walk along the river, I then had an afternoon nap, and was back on form ready for our meal, and it was fabulous. The following day we were proper tourists and did the Cathedral and the Castle.
The rest of the week though, I was very tired and had a lot of intermittent stomach pain, followed by another episode on the Saturday. Thankfully there was nothing on Saturday night, as I was confined to bed for most of the day. We managed to go to Nottingham the next day as planned to visit our son and his partner, had a lovely lunch and looked around the Christmas markets, with lots of loo breaks for me. I must admit I have found it a bit worrying though, three weekends in a row was not good in my book. So after that episode I have decided to ask my consultant next week if there are any other options for pain relief when these episodes happen, as the co-codamol and buscopan are just not cutting it when these episodes take me completely off my feet.
At the beginning of the following week I though that my bladder was going to get in on the act as well, even though I am on the prophylactic antibiotics, as it was niggling. In hindsight I think it was just down to tiredness and an element of dehydration. I have however re-discovered that a bath before bedtime can sometimes help with my sleep.
Over the last week, I have started to feel a bit more like me again, and last Saturday we had our first Christmas party combined with 50th birthday party. The Poole Christmas party is an annual event, and we feel very privileged to be invited. Yes I know it was early for a Christmas party, but it is a family event and it was the only time all the Poole family could be gathered together in the same place at the same time. Later in the evening we celebrated our friend Shelle’s 50th, you will remember Shelle from my last blog, as we celebrated Shelle & Greg’s silver wedding.
Shelle’s birthday celebrations carried on into the next day for the ladies, we had a birthday spa day. Two treatments, a two course lunch and full access to all the spa facilities including the hot tub outside, which also had wood-burner and views out over open countryside, and full bar service. However, the weather was pretty cold and even though the pool was lovely and warm we didn’t stay in for to long! It was a lovely relaxing day though.
Waiting for me when I got home was our grandson Arthur, who was staying for a sleep over and had spent the afternoon running rings around Moopa. He continued to run rings around both us too on Monday, I am so glad it was the two of us running after him, it’s hard work!! It is lovely to be able have this type of time with him as he is changing so quickly. When I think back to this time last year he was just mastering the art of sitting up, now he is into everything, cannot sit still longer than a few seconds unless he is asleep, and chatters none stop. Yesterday, I also finally managed to get my act together to put his Advent calendar together, although I admit I did buy it last year he would have been to young for it. It was a first for me, and even though I say so myself I am very pleased with the way it turned out, and today the pockets have all been filled with treats ready for him to collect on his next visit.
I am also happy to report that the Rambling Potters fundraising page for our New Years sponsored walk on behalf of the NET Patient Foundation has got off to a great start, and a big thank you to everybody who has sponsored us so far. We still have a way to go though, I know it is an expensive time of year, but if you have any spare cash all donations will be very gratefully received- https://www.justgiving.com/fundraising/Kath-Lewis3
“I’m not afraid of dying, it’s time I’m afraid of…” Interstellar 2014
8 thoughts on “Not quite feeling a 100%”
I can only say dear Kat, I live you, you are a strong lovely woman and friend. Take care and strat quilting, it will give you so much joy and keeps yor thoughts away from the NET. BIG HUG❤❤❤💋💋💋
LikeLiked by 1 person
Hi Janny, thank you 😘 I will be picking your brains in the new year, in the mean time in intend to get busy adding to my material collection😉xxx
Sorry to hear that you’ve not been on top form. I hope things settle down for Christmas. Looks like you had a nice in Durham though…glad you’ve been having some fun. The advent calendar is a work of art! See you soon xxx
LikeLiked by 1 person
Hi Amanda, it’s been a tired few weeks which is why I have been quiet. We must get our get together sorted, will be in touch after my results next week if that’s ok xxx
Great blog Kath, as always – shame about the local media, but you tried. Hope the weather will be a little kinder to you on the 7th – not a good journey when it is wet!! – I have a couple of visits this month as well, – scan on the 19th – I seem to draw the short straw for scans at Christmas – but better than Stoke a few years ago – that two day one – had them on 23th and 24th December! but, at least, it was surprisingly quiet at the hospital, so not so bad. Hope your tummy settles down, and Christmas is good – lots of rest, take care, Carole, xx
LikeLiked by 1 person
Hi Carole, glad you like it🙂the 2 dayer is not nice, when I had mine at Stoke 2 years ago they had to cancel the first one on the day it was due and re-arrange as the contrast arrived out of date. The Pet is so much better.
December is a rubbish month for this type of thing, and I will have everything crossed for you, it’s a shame our appointments never match up☹️ take care xx
Hi Kath, I find it interesting reading about your problems because it reminds me of the first 3 years after diagnosis, particularly since surgery. My stomach cramps are vastly reduced, I’m certain that is simply down to adjustments and tweaks over time and …… big regular dose of probiotics. Sleep was a problem for me until I packed in work (mind you it was also a problem before NET Cancer!). I now have a reasonable sleep regime. I’m not saying it was all work but I’m sure it played a part. Here’s hoping these issues settle!
LikeLiked by 1 person
Hi Ronny, I wonder if things are still settling down too, after my bad bout in August combined with a bit of stress waiting for these results. It does get frustrating at times😡 As you know surgery is still a no no for me at the moment, but it is interesting to know that it took you about 3 years for things to settle with tweaks and adjustments once treatment started. It is a constant learning process!
I agree with you about stopping work, it was definitely the best thing for me too and helped me with my sleep, as I haven’t slept properly for years. Which is annoying, as when I was younger I could sleep anywhere. Thankfully the injections have had a positive affect on the night sweats though, they have calmed down no end.
LikeLiked by 1 person