Well it has been a strange and busy couple of months, lots of ups and downs, hence my lack of blogging, as I have had little time or energy to write anything other than a few lines in my journal each day. There has been a lot of socializing, travelling, getting to meet online friends for real, as well as a retreat. Combine this with my husband losing a couple of longtime friends, and the family losing a greatly loved family member, time has just disappeared. The 20th June marks the 4thAnniversary of my diagnosis and boy has the time flown. Making it an interesting year dealing with my PRRT treatment, and trying to keep life as normal as possible. On the whole we have got through it in one piece, and in many ways I feel better, but my stomach issues still persist, and the pace of the last few weeks has definitely taken its toll.
I am having to take pain relief most days and my heat pack is one of my best friends, and sleep patterns are unpredictable which I don’t think helps either. When my energy is good I can get lots done, the only problem is that it has a tendency to just run out, just goes, like a switch has been flicked. I would really like is to get my stamina back so as I can keep going for longer and feel the energy slowly draining, so as I can pace myself, rather than just shutting off. In between all the travelling and socialising there has been lots of down time, and also some during.
I am hoping that this is just a consequence of the PRRT, and that over time things will get better, but unfortunately there is still little information out there on what to expect following treatment. As it can keep on doing its job for 12/18 months following the completion of treatment, I expect it is hard to predict to much in the way of side effects and how long they will last; the complexities of this disease doesn’t help either as there are so many variables between one patient and another. Nevertheless, as they say patience is a virtue, I am still working on that one and making some progress, sort of!!
Following our sponsored walk, and a good rest we did a charity quiz with friends, it was set up as part of a final project for our friends daughter Hattie’s degree course, which also raised funds for the local children’s hospice where I do some volunteering. Amazingly enough we came second, which was a big surprise as it was hard. The bonus was that there were lots of prizes and we came away from the night with wine, chocolate, a voucher for a trampoline day for the grandson, and a voucher for an ‘Escape Room’ game, all the prizes had been donated by local businesses.
Then as the weather was so good we had a birthday BBQ for my husband with family and friends, we had a great day, and even got to light the firepit in the evening. As our friend Adele was doing her yoga teaching certificate we used the garden to do some yoga classes too(and on wet days the conservatory) so as she could get some teaching practice in. I am happy to report that Adele passed with flying colours.
A dog walking group was set up as so many of us are now proudly owned by one, and we try to meet up regularly on a weekend. We usually try and pick a walk that has refreshments at the end of it, but you do not need a dog to join in. I also met up with my friend from work Amanda for a catch up, and the social whirl began in earnest. At the beginning of May our youngest daughter and her family and moved into their new home. We are so pleased that they have now got their foot on the housing ladder and have a home they can call their own, as a house warming present we got them an apple tree.
On the Friday before they moved house the storms came and took out our phone line, as a consequence we were without a line for 18 days, which also meant no internet. If we wanted internet we had to go out for it so as we didn’t use all of our phone data before it was fixed, the only plus side was that service providers now have to pay compensation if it is not fixed within 2 working days. BT and Openreach did not come out of this well, they really need to sort out their communications routes with each other, it will save them a lot of money. It also definitely focuses the mind on how reliant we are on technology for simple everyday tasks.
The weekend following the house move we travelled to Brussels on the Eurostar (a great way to travel)to see John Bonamassa, which was the hubbys birthday present. We spent the weekend there wandering around the old town, it is very pretty, and we would have liked a bit more time to explore. The the only downside was the graffiti, especially on a lot of the historical monuments, but the people were lovely. Not quite Bruge, but not a bad substitute.
Then the weekend after that we went to Stratford upon Avon to meet up with some fellow Netters and their husbands. Kat and Heather and myself have been friends online for a while via the support forums and we all have the same type of Neuroendocrine Cancer primary, and as we got on so well decided it was time to try and meet up for real. We had a great time, everybody clicked and we had a great weekend, good company, good food and a spa chucked in. Only for the ladies though, the lads went to the pub;-) In fact it went so well the next one is in the diary, and hopefully this time Anita and her hubby will be able to join us too😀
Travelling didn’t stop there, we then went off to Leeds, to see the youngest son, and celebrate his birthday. On the Thursday night we went out for a birthday meal and on the Friday we went for a wander around the city ending up at the armouries museum. It was great fun in there, and the boys had a go with the crossbows before we left. I just watched as I had completely run out of steam, and if there was a chair I sat on it. Next time I will definitely have a go, even though I know I’ll be an awful shot😬 There were a few school groups in, and when we came out there was an lecture being done on the dock about WW1 and there was also a firearms demonstration, that started just as we stepped out of the museum. As we weren’t expecting it we nearly jumped out of our skins😂
I have also taken on a new volunteering role, I am to be the client voice in Staffordshire for the Penny Brohn Cancer charity, which is working with MacMillan to try and help give cancer patients more of a voice in the medical community. As part of this role I will be attending various cancer support groups and gathering information on how patients feel their needs are being met other than just medically. It will also be interesting to see where the similarities are between the different cancers with regard to the personal journey rather than the medical one. I also completed their 2 day course on Living Well With and Beyond Cancer, it is a great course, and I learnt lots of stuff I didn’t know. If you would like to know more check out this link to see if there are some courses near you, or you can do residential ones at their Headquarters in Bristol.
I did another retreat too, this time just for a weekend in Lancashire at the Gathering Fields, which was based around Yoga and Ayruvedic medicine with my friend Shelle. I even gave up my Muse ticket to go, I was sorry to miss Muse, but so glad I went. I must admit that it was a bit of a shock when we arrived on the Friday afternoon, as we were bunking down in a converted Cow barn, and the weather was awful. But as it turned out it was quite cozy and comfortable, everybody soon relaxed with each other, and Helen the owner of the retreat was great and made us all feel very welcome. Most of our time was spent in the Yoga Barn, which had a giant woodburner in the corner, so it was always nice and warm, with brilliant views of the mountains.
I wasn’t to good on the Saturday, and couldn’t do the morning practice, but was able to do the therapy workshops and managed to join in with the afternoon yoga, although my legs decided they didn’t have the energy needed, so I did most of my yoga sitting down!! In the evening of the Saturday we did a sound therapy workshop, which was a very strange but relaxing experience, I would love to do that again. On the Sunday the weather cleared up and we were able to get down to the river, and some of the ladies very bravely went for a swim. I would definitely do it again, and the introduction to Ayruvedic Medicine and its properties has definitely left me wanting to know more. For now though I am looking forward to a quiet few weeks.
In between all this though we lost my beloved brother-in-law Dave to prostate cancer, he was such a lovely man with a big heart. He was diagnosed 6 months after me, and as the spread was so extensive he was not a candidate for surgery, but he was a fighter and gave it a good run for its money. Married to my oldest sister Helen, they made a great team and were together from the age of 18, so I have known him since I was 5 years old. He was also a fabulous dad to my nieces and nephew, and a loving granddad, Dave was a big influence in my life, and we had some great times together. He was a man with a very generous heart too, he always had time for you and touched a lot of peoples lives. Nothing was ever to much for him and it makes me very sad that he is no longer a part of our lives, but he will always be in our hearts💝
“I’m not afraid of dying, it’s time I’m afraid of…” Interstellar 2014