This week I am off to a meeting at the LSE in London, my first proper trip on my own for ages. Strangely I feel a little anxious although I’ve travelled on trains and planes by myself many, many times. I suppose this time I feel vulnerable doing it on my own. I am very tired, I do get very unsteady on my feet and it’s sometimes very difficult even to keep my eyes open so I suppose my feelings are not surprising. Mr Mason gets up early with me and drives me to Boston station. On the way we see a schoolboy apparently waiting for the school bus. “Everything he’s got on is too big for him” Mr Mason observes. “Yes”, I say, “even his ears”. “He’ll grow into them” Mr Mason reassures me. We leave Alex and the boys at the house still working on the roof and chimney. Alex tells me proudly how he drinks 9 or 10 cans of full-fat Coke every day. This may explain his cheeky grin revealing black stumps. He really is a nice man, though. The train is on time and we get to Grantham and I have to change sides but luckily there is a lift. I have decided on the brave step of taking the tube which is something I haven’t done for months. Although it’s only 2 stops from Kings Cross to Holborn, a lovely man stands up to give me his seat without the need to whack or poke him with my stick. I know it’s a digression (and I am Queen of those) but we have experienced genuine kindness from some people since we moved. Don’t get me wrong; I don’t think Lincolnshire is filled with saintly people or that London is a den of thieves but 2 things happened recently which really touched us. Firstly, I have to be cryptic about this first story or the perpetrator would get into trouble. You will remember the trouble we had in having certain services fitted when we first moved in. Well, having Alex and his team on the roof meant that something was moved which meant something in the house didn’t work. The engineer who came had left his mobile number in case anything went wrong so we called him and he was with us within a couple of hours, fixing the problem. He told us that if it happened again, to ring him but that he was going on holiday the following week so if we had a problem then, ring the company directly but not to mention he had been round. We asked what we owed him. Nothing. He was just doing it in his own time because he wants things to be right and if we called the company they would charge us a minimum of £65 each time. So this is not a scam or money-making scheme. He doesn’t want money, he just wants to do a good job. He will do this for 3 months from the date he did the installation and then it’s over to the company. The second kind deed was when Mr Mason went to get petrol. There is a family-owned petrol station nearby who still insist on filling your car for you. Mr Mason asked for £40 worth and was chatting with the pump attendant when the attendant said “You did say ‘fill it up’, didn’t you?” Mr Mason said no but the attendant had only put in something like £43 worth of petrol. “That’s OK” said Mr Mason, quite happy to pay but the attendant said no, it was his mistake and he wouldn’t charge him more than £40. Seriously, we have gone back to the 1950s and, obviously, will continue to patronise this petrol station.
So, where was I? Arriving at Holborn I walked down to LSE where I was early for my meeting. I waited outside the room until the food and drink arrived and then went in and kicked the students out who had been eyeing our coffee and sandwiches. They left without me having to hit or poke them with my stick. It was really nice to see everyone and it somehow felt very different to the last meeting which was only in February. These meetings are known amongst my friends as the Hula Hoop meetings because we always have Hula Hoops. Ever since the first meeting when they were brought along as part of lunch. we have insisted on having them each time so one of the researchers goes into Iceland on her way to the station and picks up a couple of big bags. We have been having Jaffa Cakes (in individual packs) but after 4 years we are thinking of having something else but we’re just not sure what. I’m voting for Tunnock’s teacakes, personally.
Ms Brookes had picked up 2 kinds of Hula Hoops this time – the normal sort and the new low-calorie variety. It was a bold move and there were cries of derision as soon as they were put on the table. However, we are a bunch of researchers so need to investigate things. I stuck to the original type whilst Ms Brookes and Ms Collins tried the new version. We checked the calorie difference which looked quite good until we realised the new low-calorie version has just 15g per pack whilst the original has 24g per pack. Apart from the fact that they didn’t taste so good and, as someone said, tasted like something you wouldn’t buy again, the calorie difference is very small. Puft Hula Hoops have 482 calories per 100g whilst original Hula Hoops have 507 calories per 100g leaving us with a measly 25 calorie reduction. We decided it was an experiment we would not investigate further and I believe some may even have been left for the students.
Coming home is difficult. I simply find it incredibly hard to keep my eyes open. This drowsiness sems to be a perpetual problem at the moment, no matter how much I rest or sleep. I imagine it’s a consequence of the Kadcyla and Fibromyalgia having a little battle between themselves. I meet a nice woman on the train at Kings Cross who I help to find a seat and then find at Grantham she is also going to Boston where she will be working at Pilgrim Hospital. I feel a bit like a tour guide as I point out landmarks along the way and tell her of the good things she will find in Boston. I point out the fields of rape which are in full bloom and remarkably vibrant. She mis-hears and thinks I say ‘grape’ so when I tell her it will be made into oil, she is confused and asks why they aren’t making wine with it. Chatting with her is a good way to stay awake, though.
Arriving at Boston, Mr Mason is waiting which is lovely. The following day my Macmillan nurse comes to see me and is so helpful and thoughtful that I know I have found a gem. She has so many services she can tap into for us, including someone to help with the garden or ironing, and she realises I feel cold in the evening so arranges for a heated blanket to be sent to keep me warm while I snuggle on the sofa. She has contacts with the Marie Curie Fast Response team who are keen on hospital avoidance. Immediately I like the sound of this so she will refer me to them. She also knows where I can get a massage, reflexology or reiki and will send me all the details. She is just bursting with ideas and the only downside is when she has to ask The Question – what is your prognosis? I have gone from wanting to know to really, really not wanting to know. I am in a good place in all senses and don’t want to be told “Well, next year doesn’t look too good”. I just don’t want to know any more. I have run away from London and from cancer and it shouldn’t have any part in my life any more. I know this is illogical but it’s how I feel. The following day I am so tired I only get out of bed at 3pm and am then back in it at 9pm. I think my trip to London has kicked in and added to the sleepy mix.
Today the new cleaner, Jan, arrives telling us about her cousin, Ray Clements, and his cancer. She does a good job on the cleaning front, too. My heated blankets arrive and I finally settle down to blogging although there is a lot of time with me resting my head on my hand and shutting my eyes. Finally, this afternoon we have an appointment at the doctor’s for Mr Mason who has been suffering throat trouble for some time. Of course, it is me who keeps saying “Let’s make an appointment at the doctor’s” to which he always demurs. Finally I have a breakthrough (and control of the patient log-in service at our local GP’s) so today is the day. He cannot remember the name of the doctor. I tell him it is Dr Bumhead. He does not believe me. I say a certain way to find out is to go to the receptionist and say “Is my appointment with Dr Bumhead or another doctor?” What’s the worst that can happen? More demurring. He goes to see not-Dr-Bumhead and comes back beaming. He has an allergy, probably to Lincolnshire but certainly not a hint of an infection and has a spray to squirt up his nose. I collect my ragtag bag of medicines and discover that instead of giving me slow-release morphine they have given me a small bottle of Oramorph. I will now have to make an appointment to show my GP the box the medicine comes in to make sure I am prescribed the correct medicine in future. Luckily I picked up a supply when I was in London last but the idea of the pain which would ensue without the correct medicine is just not worth thinking about.
So tomorrow we are off to see the potential oncologist at Pilrim Hospital. Fingers crossed she’s nice and knowledgeable, willing to debate and discuss my case with me before making decisions.If she is, she gets the bag of good Hula Hoops I’ve got secreted in my handbag. If not….well, it doesn’t bear thinking about.
And good luck to all those taking part in the Vogalonga this year, especially Wave Walkers and most especially my friend Mrs Bowden who is taking part so she can keep my seat warm for me!