6th Anniversary of Living with Neuroendocrine Cancer

I cannot believe that a year has gone by, and what a year it has been for the whole world. There were many times over the last 12months that I intended to write a blog, but the words would just not come, or I was not in the right place to write. As I am sure that like many of you I have not found it easy being confined to barracks once again, especially during the winter months. So for the last few days I have been toying with the idea of where to begin, and as the 22nd June marks the day of my diagnosis in 2015 I finally decided to sort of start where I left off with a quick summary of what my year has been like. We were very lucky to get a holiday in last August, discover a local vineyard on our doorstep, and get in our annual sponsored walk before going back into lockdown, keeping busy, scans, results and volunteering for NCUK.

Health wise, things have remained stable according to my scans but I have continued to struggle with pain control. This has greatly reduced my ability to walk far as I used to and greatly slowed my pace, although I think lockdown hasn’t helped in that respect either. I could not do anything that involves a lot of bending either, so my yoga went completely out the window and my daily slow release morphine dosage had to be upped again. This had the knock on effect of making me even more tired, oh the joys of living with cancer without a cure…

We did manage to make some good memories though, we got our bi-annual trip to Scotland in in August with our best friends and holiday buddies Shelle and Greg. This year we went to a lovely little village called Brora in the highlands which is by the sea and our accommodation couldn’t be faulted. We stopped in a lovely little cottage right by the beach, just a short trot across the golf course with a view to die for. The weather was kind, we could see the dolphins in the bay and there were resident seals on the beach too. We also took the dogs, who enjoyed every minute of it and I think missed it as much as us when we got home. We are definitely going back😀

Just after we got back we did a wine tasting at a local winery in the small village of Eccleshall called Grove Estate Vineyard, which is just a short drive for us. Who would have thought you could grow grapes good enough for wine in the midlands. Six of us went, which was the limit, and we were given a tour of the vines and told their history. We then sat in the owners back garden and tasted the different wines. I can thoroughly recommend all of their produce, the owners were lovely and it felt like we were sitting down with friends. We all came away with a case of assorted wines!!

In September the Rambling Potters finally managed to get in their annual sponsored walk to raise funds for NCUK, as always we had a great turn out and the weather was kind too. I found it hard work, but I did it, it took me a few days to recover, but I enjoyed every minute and we had a good laugh too. Thank you to every one who sponsored us, your generosity never ceases to amaze me.

I have been making full used of my new sewing set-up and even treated myself to a new sewing machine (the one in the photo is my old one) to be honest for me it has been a life saver, I have made masks for family and friends and new roman blinds for the bedroom. Although I thought they had finally finished me off as there was a lot of bending down on the floor to measure, cut and pin. The blinds were also quite frustrating in that what I could have done them in a day a few years ago, these took me a week. I have also managed to get in some quilting practice to, starting small with some tea cosies and baby quilts but I have also made a giant heart quilt. To be fair though I have to admit that the heart turned out to be a lot bigger than I thought it would.

Then in December I finally finished work, and officially retired, even though I hadn’t done any for 5 years , taking early retirement on health grounds. Not quite the retirement experience I thought I would have, no party and no acknowledgement from work that I had finally finished.

Christmas was a bit strange, the same as it was for the majority of the world, there is usually a minimum of 12. of us for Christmas dinner, this year there were 3 of us, Ade our youngest son Ryan and myself, we did zoom with family during the meal which was fun, and had a family quiz over zoom in the evening. that was great fun, loud and merry and the usual family disagreements when answering questions and allocating points, can you have half a point or not!!

For New Years we always get together with a big group of friends, and we take in turns to host, once again Zoom came to the rescue and we did a murder mystery, and all dressed up in fancy dress as our characters. So even though we couldn’t be in the same room, we had a good night and got to see in the New Year together, even better we didn’t have a big clearing up job to do on New Years day.

In January our sons wedding had to be postponed again, which had been re-arranged from last January, we are now looking at January 2022, so fingers crossed. I also had my first lockdown birthday, closely followed by my first covid19 vaccination. I have had the Astra Zeneca, my arm was super sensitive for a week, and I was tired for a couple of days. Then two weeks later I was wiped out for a week, but it was hard to tell at the time if that was down to the jab or the fact that things were starting to misbehave again. My second jab caused no problems at all, apart from feeling like I was coming down with a cold the day after.

Since the middle of last year I had noticed that with my monthly jab I was now only getting two good weeks out of four, which was the middle two weeks, but as everything was stable on my scans that we would track it and manage it as best we could until my next consult, unless things deteriorated to stage where I couldn’t cope. By the end of the year though I was noticing that I was starting to really go down hill about 10 days before my jab was due, especially the pain and fatigue.

I had my last set of scans and bloods done in March with my results early April, all was stable, but due to there being a further decline with my symptoms and in turn my quality of life, it was decided to try me on a three weekly jab cycle, with a follow-up consult in July to see how affective this is. I am more than happy to report that it has, in my case made a very positive difference. I am feeling a lot better, the pain is under control, I have more energy and I have even managed to get in a few yoga sessions without any radical consequences. This is a big plus for me as I have missed it over the last 18 months, and now just need to concentrate on getting back into the habit.

Also, I need to tell you that this year the Rambling Potters will not be walking, instead some of us are jumping out of a plane in a tandem skydive along with other patients, their family and friends across the UK to raise badly needed funds for NCUK. There are two dates for this 12th & 26th September, we are jumping on the 26th in Nottingham. If you would like to sponsor Ade & myself to do this, here is a link to our just giving page, thank you:-)

I’m not afraid of dying, it’s time I’m afraid of…” Interstellar 2014


8 thoughts on “6th Anniversary of Living with Neuroendocrine Cancer

  1. Hey beautiful lady, so good to read a post from you. As always I love to hear your news. I absolutely loved seeing the photos of the sewing and it brought the tears to my eyes as it reminded me of our friend Janny. Sending you a big wrap around hug, wishing you and Ade all the best with the Rambling Potters in September 😘 xxx

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    1. Lovely to hear from you Lizbeth, oh yes Jenny was such a lovely friend, and I partly blame her for the quilting, the tea cosy contains some of the material she sent me in an exchange. I forgot to tell you, some of your chapter were at Pitlochry last year when we were on our way up to Brora, I asked a lady if she knew you, but she was a new member so didn’t. Big hugs back to you and Steve, enjoy the game 😘 xxx

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  2. Hi kath, i don’t know if you remember me, i had the PRRT treatment after you at the Christie.
    Im so pleased that your scans are good and that your pain is more under control.
    Unfortunately mine has spread and i am currently recovering from a stoma operation,. The lack of pain now is just wonderful, even though i have a whole new set of challenges to deal with.
    Once again, thank you for the blog, its lovely to hear from someone else who understands 😊
    Best wishes
    Caroline

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    1. Hi Caroline, lovely to hear from you, sorry to hear about your stoma though. However, if it helps to make life better it has to be a good thing, but I imagine it is a massive adjustment in so many ways.
      Glad you liked the blog, it was hard to write as it had been so long, but fingers crossed they will be become more regular again.
      Stay safe and keep in touch xx

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    1. I know what you mean, it’s a very fine line we tread at times treatment wise. My retirement was a bit of a disappointment, but it was a big place where I worked and I have a good group of friends that I stay I touch with and we will celebrate it when we can. Hoping to get back into writing again now to, and I am doing my volunteer work.

      Overall life is good, and more importantly there is light at the end of the COVID tunnel too.

      Stay safe and well, and thank you ☺️ xx

      Liked by 1 person

  3. Im so pleased you have now got some respite. I went to 3 weekly approx 1.5 years ago but now Im only getting 1.5 weeks of no symptoms. My last set of scans in December also showed progression in the metastases.

    Well done on the plane venture! Wow! Best wishes to you all.

    Keep on enjoying life xxx

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