The last month has been a combination of busy and quiet as I work on getting some of my stamina back after completing my PRRT. The week after my last blog I got my first proper set of results, which look promising. It was a great relief to hear that everything remains stable, and that there is evidence of a slight reduction in the size of some of my tumours in my liver as well as in some of my lymph nodes. I must admit that I was very nervous before the appointment, as it is early days, and as the treatment can remain active for about 18 months from when it is started I wasn’t expecting anything other than hopefully stable.
So to hear that is was already doing its jobs was the icing on the cake. The fatigue persists, but it is not as bad as it was, my stomach continues to simmer, at times it can be very sore, but it is manageable with medication and heat packs, and so far even though I have had to take to my bed a couple of times in the last few weeks it calms down quickly. The bloating is less and the cramps are nowhere near on a parr with what they have been in the past. I know it will not stop my stomach pain, I am stuck with that, but any reduction in symptons is a win and long may it last.
Also, due to the ongoing production problems with the Creon capsules (production of the 40K will stop this June) that I take to help me absorb my food properly, I have been changed over to Nutrizym. I haven’t started those yet, as I am finishing off what is left of my Creon, so fingers crossed there will be no upsets when I change over in the next week or two. My sleep is still not brilliant either, I had hoped that now I was starting to be more active again that it would improve, no such luck. I occasionally get a good nights sleep, but most nights I will wake up 3 or 4 times, so its no wonder I wake up tired everyday.
The day after we got my results we went to see Wilko Johnson play at the Buxton Opera House, it is a great venue and we were really looking forward to it. I had bought the tickets as soon as they had been released last year, so we were only four rows from the front. That morning I was really bad, but thankfully things calmed down late afternoon. Supporting Wilko was Glen Tillbrook from Squeeze, we had already heard that his acoustic set was brilliant so it looked like we were in for a good night. All I can say is thank god for Glen Tillbrook, his performance was as good as promised, however I am afraid I cannot say the same for Wilko. We were both disappointed, and would have left before the end if we hadn’t been so near the front, the band sounded like they had just turned up without any rehearsal, everything was out of sync, and there was no interaction with the audience…
I did feel better though on the Friday, and our new curtains arrived for the living room. We have been in this house for 13 years and lived with the same curtains that were here when we arrived. Don’t get me wrong they are very nice curtains, a heavy cream colour that goes with everything, they have been cleaned regulary and stood the test of time very well. But the linings on the back windows pair were beyond repair, and over Christmas there was a red wine incident, so it was time for a change. I put a call out on our local area forum on facebook, to get a local recommendation. I have never had curtains made before, I have usually had ready made or done them myself, but I don’t enjoy making them and it was a big job. I was not disappointed. Vicky from Kate’s Kurtainsdid a lovely job, so we now have new curtains and pelments, and Hubby is under strict instructions not to throw red wine up them and after the other nights near miss I may have to consider a change of seating position on the settee!!
Buddy is enjoying his play dates on a Friday, when I can I meet up with Di who has walked him for me when I have been out of action, and we have quickly become friends. Buddy loves her to bits, and on a Friday it is like Labrador heaven. There is Jess a black lab and the smallest of the three, who loves a ball and has endless energy. Diego is a golden lab who a bit smaller then Buddy, all we are missing is a fox red. Buddy and Diego also seem to have a bit of a bromance going on to. They all run around like three whirling dervishes for an hour chasing balls and investigating the woods, then we hear nothing from Buddy from the rest of the afternoon. He just loves company:-)
I finally got myself signed up for the 2 day “Living Well with Cancer” course run by the Penny Brohn Cancer charity, last year each one clashed with my PRRT tretament. I have mentioned Penny Brohn in a previous blog, they helped to run the retreat for the NPF in 2017 and very much take an holistic approach to cancer. It is about the person as a whole, and your wellbeing, whether you are living with cancer or supporting someone with cancer. It is not just about the patient part. I am also hopefully taking on a volunteer role locally with them, but I will tell you more about that when I have completed my training. If you want to know more about what they do, and if there is anything happening in your local area you can check them out here via this link Penny Brohn UK
I also managed to get to my second NET Natter of the year, and it was good to see some new faces there, in the respect that it is good to meet up with others like us and be able to talk freely to people who understand. My daughter came along to this one too, and said it was good to meet and talk to others in the same position to. If you haven’t been to one, but feel you would like to here is a link to the NET Natter meeting calendar, everyone is welcome, it is not just for patients, but your supporters too, whether they be family or friends. Remember, it can be good to talk.
A couple of weeks before the sponsored walk we did a practice walk around last years route Tittesworth Reservoir with our friends Shelle & Greg with the dogs. This proved I could do the distance, albeit a bit slower than last year, and we got a nice pub lunch at the end of it. We also started our Game of Thrones catch up marathon to reacquaint ourselves with what happened, when and where before the final series starts. It is amazing what we had forgotten, and it is still as addictive as it was the first time around.
The Wednesday after the practice walk I had a steroid injection in my knee, I have a minor complex tear of the meniscus, which happened just over three years ago during a pilates class, haven’t done one since. At first I thought it would just settle down as I didn’t know what damage had been done, then I just managed it with painkillers and rest, as there was to much else going on, I didn’t want to be messed with anymore than necessary. I am sure many of you can relate to that feeling. Anyway, last year I had an MRI which confirmed the damage, this was followed up with physio to strengthen my knee, but to no real affect. The injection felt weird, but didn’t hurt, and after a couple of days rest it seems to be a lot better, so fingers crossed it remains that way, as I really don’t want to go down the surgery route. Added bonus is that I now have two knees that match, in that they are both the same size!
We also had Arthur for a sleep over just after that, mum & dad had booked a spa for the Friday so Ade booked the day off work so as we could have a day out together. He had a bit of a restless night, which is unusual for him, and he ended up in with us, boy can he wriggle, he must do miles in the night. So as we were all on the tired side and I had only had my injection two days before we decided to keep it local, and took him and Buddy to the Downs Banks where they could both have a good run around. Mum & dad joined us too as the spa wasn’t up to scratch, Arthur wasn’t in the best of moods and was carried for a lot of it. We had a quick drink at the pub and he perked up for a bit when he had an ice lolly. Turns out, the boy wasn’t just tired, the next day he was covered in spots, poor guy had chickenpox, no wonder he was tired and grumpy.
On the Tuesday before the walk Shelle took me out for afternoon tea, a belated birthday present. We went for the guilt free option which was all gluten free, it was nice, but still needs a bit of work. Shelle is vegetarian, they had forgotten about that, and some of the cakes need a bit more work, the scones and banana bread were a bit salty and dry. But with a bit more thought and work they will have a good alternative option for those of us that can’t do the full gluten fest or eat meat or fish. We have them our feedback, and had a lovely afternoon as we always have plenty to talk about, and its always nice to be taken out and spoiled;-)
Then before I knew it, it was 6thApril, the day of the sponsored walk, our 4thannual outing to raise funds for the NET Patients foundation. Thankfully the weather was kind to us and we had a good turn out; including Arthur there was 18 of us, plus 6 dogs. To be honest I had forgotten how hard the Wrekin can be on the legs, it is years since I have been up, and that was back when I could do it without thinking about it. It was hard walk, I was last to the top, but I didn’t care I did it, and I did get a lovely welcome when I finally got there. Thanks Janine for keeping me company for the last bit. According to my tracker, it was the equivalent of climbing 47 flights of stairs, on my husbands tracker it was 84 flight, but on my tracker a flight is 16 stairs, and on his 11 stairs. Also some of us went back the way we came, whereas Ade and the majority came back via the longer route, which is steeper to, of course we all de-camped to the pub afterwards for a well earned lunch:-) Arthur was the real star of the show though, at 3 ½ years old and a week after having chickenpox he did the full walk without complaint, a proper little trooper.
On Sunday my legs screamed for mercy whenever I moved, it felt like I had done a boot camp that consisted of just doing squats for hours on end! We took Buddy out for a walk to try and ease things off, it didn’t work, and to be honest I don’t think he really wanted to go either, he was also shattered!! My legs finally feel more or less normal today, but Monday & Tuesday were a complete write off, then again the rest of me wasn’t working very well either. But it was great fun, and worth every step.
Finally I want to say a BIG THANK YOU to all my family and friends who walked with us, and to everybody who sponsored us. It means so much to so many of us, the fund raising page will remain open for another few weeks if anyone else would like to donate:- ‘Rambling Potters Annual Walk for Neuroendocrine Cancer’
“I’m not afraid of dying, it’s time I’m afraid of…” Interstellar 2014