This time last year I officially became a blogger, never saw that coming, then again I never expected to be living with a rare cancer diagnosis either. Thankfully though I am in a lot better place now than I was this time last year, and all things considered it hasn’t been too bad a year.
Even though I have good days and bad days, I feel a lot better health wise than I have for many years. I could do without the regular poking and pulling and all my new meds, but that is a very small price to pay for improved quality of life, I am also sure my GP is happy to be seeing a lot less of me. The fatigue can and I suspect always will be a bit of killer some days, and as I have written many times before hard to deal with. Especially when there is no rhyme or reason for it that I can see, although my insides no doubt know why… I am very tired as I write this, but at least this time I can readily identify the reasons.
It has been a hell of a month (in a nice way), and my feet have hardly touched the ground, so I forewarn you now, this is a bit of an epic.
It all started after my June injection on the 22nd, when I posted my blog detailing my first 12 month’s journey. After that, it all went a bit manic, I have intended to blog a few times over the last 4 weeks, but just did not get a chance! On the Friday, we had our grandson for a sleepover so as my daughter and her husband could celebrate their wedding anniversary, they hadn’t been able to do anything last year due to his impending arrival. Knowing he would be up early and that we already had a busy Saturday ahead of us, I went to bed early. After Arthur was picked up we were straight out the door to attend our first Stoke Natter meeting.
Kevin Jones and his wife generously sort it all out, and it was so nice to meet everybody, and be able to sit down face to face with people who know and understand what you are dealing with. Not just for those of us physically living with this, but our supporters too. It was good to see Nikkie again from the Net patient foundation, and the bonus for me was that I got to finally meet the lovely Carole too, we chat regularly on the Net Patient Foundation site, and she also posts all the great pictures of the moon and early sunrises on the Friends of the Nets Foundation Facebook page.Unfortunately however, we had to dash off just before the end, this I admit was for purely selfish reason’s, I had a hairdressers appointment. I was having an updo for a charity event we were attending that night, for lung cancer.
A friend of a very good friend of ours had unfortunately died of this nasty disease last year, and this event was to help raise funds for the development of a new breath test that will be able to detect the presence of the disease almost immediately for very little cost. We had a great night, and they raised just over £7500 on the night, and one of the attendees, Jonathon Gamble is walking from Land’s End to John o’ Groats to raise funds too. If you are interested in knowing more, or would like to sponsor Jonathon on his journery here are some links – The Paul Taylor Charity Fund & Jonathon Gamble – Land’s End to John o’Groats Crowdfunding page.
As a consequence of these busy couple of days on Sunday I was very tired, as I was also fighting my post jab lag, but we had a holiday to prepare for, so there was no rest for me. It would be fair to say that by now I was not only tired but over emotional with it. Short tempered and easily brought to tears by the slightest little thing, this continued into Monday and to be honest I am amazed that the packing got finished and nothing was forgotten.
Tuesday we jetted off to Lanzarote for 6 days, a first for both of us as we have never visited any of the canary islands, I was a bit nervous as to how my body would cope with the flight, but luckily everything behaved itself. As soon as we got to the hotel we went straight to bed and slept for four hours, but we had left the house at 3:30 that morning. We had a lovely hotel, not very big, and just out of the centre of Playa Blanca, which was an easy walk in.
We were all inclusive, so I was a bit apprehensive about just how much of the buffet I could eat due to my problems with gluten, but everything was marked up, and they had gluten free bread too. We were to be honest very inactive tourists, we were both desperately in need of this holiday, and so sticking to plan we did very little. By the Thursday the past week finally caught up with me, so was I fit for nothing. As we were right by a small inactive volcano, Ade decided to leave me in peace and walked up to look at the crater gave me a wave to me from the top, and took a lovely picture for me. I would have loved to have gone up too, but it just wasn’t happening.
My stomach was sore and bloated, in fact everything hurt, and I needed to be near the loo, luckily by Friday I was feeing better, which was just as well as that was Safari day, we had great fun following our guide, bombing around the Timanfaya National Park exploring volcanoes and tasting wine, in little electric cars called a Twizy.
All to soon it was over and it was time to come home, and finish our prep in readiness for the decorating to start. The hall, stairs landing and downstairs loo was finally getting a make-over, we also had a new bannister and handrail fitted. It has only taken us 10 years to get around to it!!. We had Arthur for another sleep over, as his mum was been taken to Harry Potter world for the weekend as her birthday treat, I was not in the least bit jealous, honest… The little man is always a joy, but boy can he move, he did have great fun with the pans in the warming drawer of the oven, especially when combined with a wooden spoon for extra acoustics!!
Then on the Monday the decorator and was here at 07:45 on the dot and every morning for 6 days, so no lie in’s for me. Although it’s not that long ago that I would have considered that time in the morning a lie, as when I was working I would be up at 05:30 every morning. It was worth it though, is you disregard the fact that it took 6 tester pots to match paint to wallpaper, it all looks and feels fresh and lovely. We also managed to fit in a trip to Leeds to see our youngest graduate., He had worked hard and gained a 2:1 in Geophysics, its always a very proud day for everybody, well done Ryan.
With the decorating finished, this last week I started slowly working my way through the house and cleaning up the mess, mostly plaster dust, which gets flipping everywhere. Had my monthly jab courtesy of Mr Lewlogs, and on Friday met up with one of my oldest friends. We were inseparable all the way through secondary school, she is godmother to my 3 oldest, and youngest daughter Judith is named for her. We are in regular contact, but due to busy lives and families, we have not managed to meet up face to face for 11 years. If I thought my job was busy, it is not a patch on hers. Needless to say, we had a great catch up and those 11 years did not matter, we had a nice meal, a couple of glasses of wine and a mad rush for trains. I literally made mine by the skin of my teeth!! We have promised not to leave it so long next time. The pictures below are 36 years apart😯
Then Saturday we had another 50th birthday party celebration for our lovely friend Jo, it was a great night, we do love a party. The weather was perfect, there was a band, a hog roast, cake, wine and good company. I have bruises on my ankles from sit down dancing on the garden bench, and a massive bruise on my left big toe from dancing with somebody with heavy feet, aka my husband!!
Having got my first 12 months out of the way, I had also decided that I needed to put something back, so decided to offer some of my time to the local children’s hospice as a volunteer, which is just around the corner from me, The Donna Louise Trust. I offered to help out in the office and had visited for a chat and applied for my DBS checks before going on holiday. It is a fantastic place, and providing much needed help and support for sick children and their families. I did my first stint this last week, and really enjoyed it, I know it will take me a while to find my feet, a bit like starting a new job I suppose. They are fully aware of my situation, but it is a very busy little place, and I hope to be able to give them a few hours a week every week.
What I didn’t realise though, and this is applies to many charities that have volunteers, is that they are always short of volunteers willing to share their professional skills. I will be helping mainly with the non-technical IT stuff, looking at end user requirements and end user training. So fingers crossed I can do a good job.