After my last post, the fast pace and travel continued for a few a weeks more, which has been great fun but also challenging. I have done two more presentations, a coffee morning to raise funds morning for the NET Patient Foundation and some publicity to promote the services of the Penny Brohnn cancer charity. All of which have gone well, but I have been fighting a constant battle with my abdominal pain, which continues to persist and intrude on everyday life, this has resulted in a change of medication which has taken a few weeks to get the dose right, but hopefully we are now there on that one.
So, even though generally as I have said previously I am feeling a lot better in myself, which is allowing me to do more once again, and be pro-active, it has been a bit of a catch 22 situation as I was having to dose myself up to do it. Basically my abdominal pain was not easing off, if anything it was getting worse. At first I put it down to the fact that I had had a very busy couple of months, but even with a lull in activities where I had the opportunity to rest up a bit, it was not showing any signs on improvement. My consumption of painkillers was rising, and I was spending a lot of time hugging my heat pack. The knock on affect of this was that I was always tired, and spending a lot of time on the settee. I was able to fulfill most of my social commitments, but some days it was a struggle and some things did get cancelled. I had a couple of presentations coming up, a newspaper interview and a coffee morning, and these were my absolute priorities.
My first presentation was to be a version of the one I had done for IEL in September about my journey as a patient having undergone PRRT, they liked it so much they asked me to do it again in Milan in November for their parent company AAA (Advanced Accelerator Applications). I felt very flattered to be asked, and of course agreed, I could also take the hubby and as it coincided with our wedding anniversary we decided to kill two birds with one stone and turn it into a mini break. But before this I had an interview for our local paper about the services offered by Penny Brohnn a cancer charity. I have mentioned previously and how it has helped me to cope with this disease via their holistic approach.
I also did my annual coffee morning for the NET Patient Foundation on Saturday 9thNovember, and we branched out a bit this year too by having a few stalls. It went really well, and we managed to raise £450 on the day, so I would like to say a big thank you to everybody who helped and attended, I couldn’t do it without you. As it so happens, the newspaper article was also published that day and this is the linkif you would like a read, the headline photo is a bit serious, as they tend to be, but I do smile later on;-)
Needless to say on the Sunday I was tired and sore and spent the first half of the day in bed. On the Monday we would be off to Milan and I needed to be well for that. At least we didn’t have an early start, I was nervous and excited and we arrived in Milan early evening. When we landed we got the train into the city centre then the subway to the hotel, which was right by the cathedral, which even in the dark and rain is pretty spectacular. The weather was very wet, but luckily we didn’t have far to go when we got out of the subway station. The hotel was very nice and I must admit that we were a bit overawed by it, especially as a porter took out luggage up to the room on a separate trolley. We have never experienced that type of service before, but I definitely recommend it. I had arranged to meet up with the Rachel from AAA who is head of comms the following morning after breakfast to have a run through of my presentation before the main event, for me, in the afternoon. We had spoken a few times on the phone and I was looking forward to meeting her, I was not disappointed, we hit it off straight away, and as always it good to be able to put a name to a face.
The run through went well after a few false starts, and then it was time for the main event. I was a bit nervous, it was a big room, but with Rachel’s support I did it, and there was a good Q&A session afterwards. My husband Ade had a front seat, and he got a bit emotional; to be fair we both did, but of course he hadn’t seen me do this sort of thing before, and it is a very personal journey for both of us but in different ways. Afterwards I was able to meet and chat to lots of people from the audience, everybody was very kind and enthusiastic; they are very interested to know what this journey is like for the patient and how they can help to make it easier. Ade was also very happy as he got to speak to some of the scientists responsible for the production of the PRRT treatment. Since we knew I would be having the treatment he had wanted to learn how it is made, and he got his answers. I think it helped that he could speak their language from a scientific point of view. Thank you Rachel, and everyone else involved, for inviting us and looking after us so well, we had a great day.
After it was all over and we were able to catch our breath, we made our way across Milan to our next hotel, which was right by central station, very handy for our next couple of days of exploration. Once we had checked in and got our bearings we stocked up on snacks and refreshments for the room, aka wine, crisps and chocolates and found a very nice Asian restaurant to eat at in the evening. It had a good gluten free selection, so was a real treat, for me especially, as it is hard to find gluten free Asian type food when eating out, it was very good.
Wednesday was our wedding anniversary and we made our way back to the Cathedral, or to use the correct name the Duomo, booked our tour tickets and went for coffee. We opted for the Starbucks, an easy option I know, but what a place, or should I say piece of engineering, definitely worth a visit if you’re in Milan. As for the Duomo, I have only one word, WOW, we didn’t see much of the inside but the view from the roof top is brilliant, in fact the roof itself is incredible and well worth a visit, the architecture and skill used to build it is beyond words. We followed up with anniversary cocktails at the department store opposite, we had seen the roof top bar from the Duomo roof and decided that was the place to go!!
The next day though things caught up with me, so after Ade did his run we spent the morning in the hotel as I was very tired and sore. Thankfully the painkillers and bottle hot water did their job eventually, and we were able to venture out in the afternoon. Unfortunately we didn’t get to see as much as we would have liked, but we did get to see the Leonardo Da Vinci exhibition, which was fascinating, and a wildlife photography exhibition which had some pretty amazing pictures. Ironically though we found out as we were going round that it was on loan from the natural history museum in London. We didn’t have time to do the castle, although we did walk through it, but at least we have something to come back for.
Once we got home I needed to rest for a good few days, and eventually decided that it was time to contact my nurse Sarah and seek some further help with my pain management, as it was starting to have a real impact on my ability to do things again, and I had things I needed to do. So it was agreed that I would give slow release morphine a try to see if that would help to keep things calm. Before starting on this new regime though I went over to Nottingham with our youngest daughter Judith for our son Derek’s hen do, we were the surprise guests, as he didn’t know we were coming. Luckily for him, he was really pleased to see us, and we had a great weekend with everybody. Catching up with his longtime friends from university and meeting some of his newer friends too.
When we got back I started on the lowest dose morphine, 5mg twice a day topped up with liquid morphine for breakthrough pain when needed. This new regime was started just before my next presentation, which was a collaboration with 3 of my other NET Ambassadors, Craig, Sally & Bethan under the guidance of Nikie & Catherine, for the UKiNets conference in Birmingham at the beginning of December. Our remit was to talk about the impact of this disease from a personal rather than a medical perspective, we were not in the main conference room, but there was standing room only, and the feedback was that it was very well received. Once again it was quite emotional, for all of us, living with this disease and learning to cope with all it consequences is one thing, talking about it to a room full of people is quite another. Even though we know our subject well. I also had the added bonus of catching up with both my nurse Sarah and my consultant Dr Hubner.
Over the last four weeks my dosage has been upped again twice, and now I think we have hit the target with 15mg twice a day, supplemented with paracetamol throughout the day. I still have the liquid morphine on hand for any breakthrough pain, but since starting on the 15mg dose Last Thursday I have not needed to use either the liquid or my heat pack. I also had the best nights sleep I have had in a long time on Friday night and I’m talking months here not weeks, so fingers crossed this will now keep things at bay for the foreseeable future.
Finally, on Sunday we took our grandson Arthur on to see Santa on the steam train, with his mum and dad and his friend Elsie. Both children were super excited and it was great fun, their faces when Santa came in were a picture and they were both pleased with their presents. Overall a great day was had by all. Now we are in the last stages of preparation for the Christmas holiday, so I would like to wish you all a very happy Christmas and all the best for the New Year.
“I’m not afraid of dying, it’s time I’m afraid of…” Interstellar 2014
4 thoughts on “Sharing My Story and Getting on Top of the Pain”
Good to read your update. I too wondered why you are still suffering with abdominal pains – thankfully I do not. When I read your newspaper article I realised we are the same age!
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Hi Catherine, the pain has always been an issue and we manage it the best way we can. I am just relieved to have it under control again. PRRT has been really good for me though, and I hope your feeling the benefits too x
Hi Kathy, it is always good to see your updates. I am no longer in the Net forums.
You did yourself and hubby really proud, well done! I hope you had a lovely time in Milan.
Do they consultants know why you have so much abdominal pain? I used to experience it on a very severe level but this was prior to surgery. At the moment I get a few pains but it’s generally around the liver where I still have mets.
Have a lovely Christmas Kathy and best wishes for 2020.
Thank you for sharing your journey with us which helps to raise awareness.
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Thank you, we have a few ideas on what it might be, but everything is stable so if we can manage it I’m good with that. Possibly adhesions, but had them done twice already. I hope you can get some control over yours, pain just drags you down in so many ways.
Have a good Christmas too, and happy New Year xx
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