The great Hula Hoop scandal and Mr Mason’s allergy

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!

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Crocs away!

We spend a lovely weekend with our first non-related house guest, Ms Marsden. She arrives with chocolate, biscuits and a gorgeous handwash and we reward her with pasta and a glass or two of wine. She is the sort of house guest who fits in immediately, offering to make cups of tea and even doing the washing up. She says all the right things about the house and we take her to trawl round the charity shops in Horncastle (at her request), ending up in the old Coop building which has become an antique shop with a parrot, the shop becoming crazier as one progresses through it. Before we go out into the backyard, I say to Mr Mason that we should prepare her. A woman passing by says “Oh, yes, do. I haven’t been here for 3 months and it was a shock”. The backyard is a cacophany of porcelain and china, set out on trestle tables that obviously sit there whatever the weather. It is a sea of plates, cups, chamber pots and assorted pieces of glass, some broken, some looking like they have been there for years, all waiting to be picked up and loved. Ms Marsden copes admirably but is visibly shaken and says a few rude words. All in all, though, Mrs Marsden should be proud of her daughter and the way she has been brought up. Well done. I’ll bet it was a tough job.

This week we have the roofers in. The main roofer, Alex, has no front teeth as I may have mentioned before but his team are all present and correct in the dental department. As is the way with tradesmen, once they get their teeth into a job, there are other things which are found to be wrong and, as we’re hunting for the source of a little damp, it’s important we get it right. Not the cheapest quote, we feel they do know what they are talking about so when the initial estimate rockets to over 4 times its original, we still feel it’s OK. One of the chimneys needs rebuilding completely and so they will get the chance to produce lime mortar. There is a lot of discussion on the type of bricks we need – we’re in a conservation area – and whether we will need Building Control to get involved – not if we’re having less than 25% of the roof replaced – and now we’re needing scaffolding and a skip and more boxes of tea. Luckily in this day of technology, they can actually show us photos and videos of what they are seeing on the roof so we can see there is damage.They tell us stories of how one of them didn’t used to like heights (making roofing a strange career choice, surely) and how they once got stuck on a roof. Their client had to go to work which was fine but about 5 minutes after she left, one of the ladders fell down leaving them stranded. And obviously the mobile phone was in a pocket on the ground. I believe they were up there from 8am until she came home at 6pm. The best story is the one about how they are all frightened by spiders. As they deal mostly with old properties and rip up old roofs, spiders come with the territory. I have no idea how they manage that one but I have a few entertaining images running through my brain. Alex, the boss, still likes to talk the hind leg off a donkey and repeats stories endlessly, sometimes in the same session, but he’s happy.

Dog is thoroughly anxious about having people on the top of his house. He likes the roofers – they are all nice men and friendly to him – but he shows his anxiety by rushing round the garden and throwing himself around. On day one, someone forgets to close the big gate to the drive and Dog makes a break for it. I am working in the study and come downstairs to hear more about the roof when I realise he is missing. He is not upstairs or in either sitting room so we go into the road and call him. From somewhere near the pub he comes rocketing down the road, pumped full of adrenaline and crazier than usual. He wants to be one of the boys, part of the gang but sadly doesn’t have the brain cells to manage this. At night he is totally chilled, no longer plagued by urban foxes so he can just relax.

The psychotic cat has gone wild. She has discovered grass and trees and her animal side which includes weeing in the garden and killing tiny voles and field mice. These she juggles wildly with a slightly mad expression on her face. She lays on her back in the sun and rolls from side to side in ecstasy. When not killing voles or practising her circus skills she sleeps on my bed, taking up as much space as possible with her new-found status. I thought the matronly cat was beyond catching anything as she is around 11 and likes to take things easy these days. Going to let Dog out last night, she is sitting on the path and Dog pays her attention as he goes past, sniffing her excessively. It’s only when she stands up that I see a freshly caught vole at her feet. As Dog goes indoors, I hear a crunch and see her start to eat it, despite my admonishments. It’s her cat nature. She caught it and she’s damned well going to eat it.

Sitting down in the evening, we see something big but almost white swooping around the castle. It alights on a fence post and we see it is an owl. I think it is a tawny owl but when I look it up online, I think it’s actually a barn owl. It is beautiful and clearly searching for voles of its own. And all this seen from the comfort of our armchairs. We are very lucky.

Seeing the GP, I ask him to transfer my oncology care to the local hospital. He says he will set the wheels in motion and when it will happen, he doesn’t know. I will get a letter. 3 weeks goes by awfully quickly and we realise that we will have to go to Charing Cross for my next treatment on 22nd. I get a letter from the local hospital asking me to see someone on 1st May from the clinical oncology team in the ante-natal department. The last bit confuses me but I suppose it will all become clear. So it’s an early start next week and crossing fingers that it won’t take 2 hours for the chemotherapy to come up from pharmacy again. It’s a big deal starting over with a new oncologist. Will I like him or her? Will he/she have enough experience? Will they understand me and my complicated diagnosis? It’s all a bit of a worry but, like moving hundreds of miles away, it’s a step I’m prepared to take because ultimately I think it will make life better. And I think my current oncologist would be prepared to offer advice if asked as she knows my situation so well. I also make contact with the local Macmillan nurses this week. The nurse who rings is very helpful and willing to give up her time. She tells me about various services she knows about and gives me tips on where else I can find out about groups or complementary therapy. Although she doesn’t have to, she wants to come out and meet me to have a chat and get to know me. She asks how I chose my GP as most people would go to one in the nearest town whereas ours is a little further away. I tell her I looked at reviews online and also liked the fact they have nurse practitioners so have a more rounded experience as a practice. She tells me she used to be a practice nurse there and that I have made an excellent choice which really cheers me up. Another important choice is getting a cleaner. The house is not difficult to keep clean but with 3 animals and 2 humans, floors are constantly in need of washing, bathrooms cleaning – you know the drill – so we find a woman who runs an introduction agency. I have quite a long chat on the phone with her and then she comes to meet us. She is entranced by Dog and this sets her off telling us lots of animal stories (a kitten found in the middle of the road, that kind of thing) so it’s quite a while before she gets round to explaining how her service works. She vets cleaners and will find someone who will be suitable. They are insured (but only against major damage) and will not work with bleach or scour your bath in case they damage it. Do we have a feather duster on a long pole? Er, no. She tells us where we can get one and goes on to explain how much she loves cleaning. It’s a strange world. She phones later to tell us a lady called Janet will be calling us. Is that OK? Other than possibly objecting to her name, I can’t think of anything to say other than “yes”.

But this week also sees me making a difficult phone call to my son, Mr Mason jnr. I steel myself before I make the call and then, after a brief preamble I cut to the chase. I say I have something to tell him. “Dad and I have bought Crocs”. He sounds suspicious when he asks “Why?” I explain about the early morning dew, the faff of putting on shoes when going out into the garden each time. “OK”, he says, “as long as you promise never to wear them when you go out”. I promise (and mean it). Phew. I think we got away with it.

Checking out the opposition

We know life likes to slip in little surprises now and then but this week has been exceptional for them. Firstly, we plan to make our first trip to Charing Cross to see the oncologist, have blood taken and then have chemo picking up Mr Mason jnr and Ms Atherton on the way back. All the timings are realistic – leave at 7am, oncologist at 11am, chemo at 2pm meaning we can leave shortly after 3pm. What happens is we get to see the oncologist around midday but have had bloods done in the meantime so that’s OK. She is reassuring about the pains I have been experiencing in my chest and upper back and shows me from my last bone scan where I have damage to my upper spine (apart from elsewhere) and prescribes a muscle relaxant to help with those. My chest is a bit crackly but that’s nothing new. We have time to go to Maggie’s to see lovely friends Ms Baranska and Ms De Roeck who are meeting there and manage to have a good catch up with them. We also see two of the staff who give us a ‘Good luck in your new home’ card with a lovely keyring and we are so touched that they have thought of us when they have so many people to look out for. So far, so good.

We make our way up to the chemo suite and are told my chemo isn’t up from pharmacy yet but that my bloods are OK so all is good. My friend Ms Greer arrives and the three of us sit in the waiting room discussing sanding worktops, Danish oil and the like. Time ticks on. We have arranged to meet Mr Mason jnr and Ms Atherton at 4pm so shortly before then I suggest Mr Mason goes down to explain the situation to them. Ms Greer and I go into the chemo suite just before 4pm and the pantomime continues. It is not the chemo suite’s fault the drugs are so late being delivered but then I have to endure what I can only describe as clumsy attempts to insert the needle into my portacath. And yes, in case you don’t know, it hurts. Quite a lot. Two nurses take a couple of goes each and I suggest other nurses in the suite who I know are proficient. One is summoned over – Rosie, who gave me my first and last lot of chemo the first time round. She manages to get the needle in first time and the two nurses who are sharing me are still laughing and joking about “It will take 3 hours now, OK?” My friend Ms Greer observes she cannot tell if they are serious or not. They know we have a long journey ahead of us and that our day started earlier than theirs but they don’t seem to grasp I am actually quite upset with the process. A little soothing would do wonders at this point but it doesn’t seem to click with them.

With the needle in, I am given chemo over 30 minutes when every time before it has been given over 90 or 60 minutes because it makes my blood pressure increase. I just want to get home so say nothing. Of course,by the time we leave it is around 5pm and the traffic is appalling. I am worried about how tired Mr Mason is but he wants to drive straight through and we get home just before 10pm, worn out and cold but luckily with pizza in the freezer so we can eat pretty quickly.

For the next couple of days I don’t feel really well. I make an appointment online with my GP so I can discuss the merits of changing to the local hospital but I feel really sleepy and exhausted all the time. I keep going to bed early so I’m not really making the most of seeing our guests who I have been really looking forward to. On Saturday morning, I wake in the early hours shivering. I know my skin feels hot but convince myself in that “I don’t want go to hospital” way that I’ll be fine. I wake a couple of hours later just feeling hot. I take some Domperidone as I feel a little sick, a little oramorph as I ache and ask Mr Mason to go and get some paracetamol from downstairs as I have run out in my drug arsenal. While he is gone, I take my temperature. It is 39.4. Ooops. Advice from oncology is always to go to hospital if your temperature reaches 38 and I know my normal temperature is in the 36 range so it really is high for me. Should we go by car to A&E or would an ambulance be faster? In the end, I dial 999 (first time for myself) and speak to the ambulance people who, given that I am not registered at the local hospital, say they will send an ambulance “in case they need to pull over to provide assistance to you”. The operator suggests I take a pull on an inhaler while I wait and get all my meds together. The ambulance is here in very few minutes and the paramedics come upstairs and assess me. They phone the hospital to see if they can take me straight to the ward and by-pass A&E. Luckily the sister agrees so we set off with Mr Mason in pursuit and Mr Mason jnr and Ms Atherton in charge of Dog and the cats.

We have a nice welcome on the ward and they apologise that they cannot put me in a bed straight away but that as soon as they have taken bloods and put up some antibiotics, I will have one. The nurse who comes to take bloods is obviously tired and at the end of her shift as it is nearly 7am. She says she will have a go but if it doesn’t work, she will pass it on to someone else “as I’ve been up all night”. I point out my One Good Vein helpfully and she manages to drag some blood out of it although it’s now buggered for anyone else to try using it. Then she has to put a canula in. This proves more tricky and I’m quite glad when she leaves after she just stabs a needle apparently randomly in the back of my hand. A very nice young doctor comes to try and I point out areas where canula have been inserted before but after stabbing me at least 6 times – (and twice in the wrist where, trust me, it really, really hurts) he calls a nurse from Intensive Care to come and have a go. She has clearly just been for a fag break and repeatedly says how sorry she feels for me, punctuating every bit of conversation with “Oh, bless your heart”. She tries again and again, finally getting one in the outside of my right arm. The sister, Bee, comes to put the antibiotics in by syringe but it really stings so she puts it into a bag and puts that up. After a couple of minutes, we notice my arm is swelling a lot so clearly the antibiotics are going into my flesh rather than my vein. Sigh. The Intensive Care nurse, Tina, comes back and wrangles my arm again, finding a spot in my hand that hasn’t been stabbed before but she hits the vein and the rest of the antibiotics go in. They also find me a bed on a ward with Gillian, who has been there for over 4 months, and Lena, who has also been there a long time. There is another lady there but she appears to be in extreme pain and it’s nice to see the staff are aware of this, putting off a scan she needs as she is asleep and they know she’s been awake most of the night. The nurse asks me what I want for breakfast and I opt for some toast which they also bring for Mr Mason. Every time an auxilliary nurse comes round asking about tea or coffee, Mr Mason is included. At lunch time, Mr Mason is given the left overs, for which he is very grateful. Gillian knows everything about everyone, having been there so long, and is determined to give us a good grilling. At this point I realise I am very tired and close my eyes, leaving Mr Mason to explain himself to her. She tells us intimate details of all the other patients at the top of her voice. Either they are deaf or past caring as no-one complains or tells her to shut up.

An oncologist is summoned from Lincoln to come and have a look at me. They don’t go in for privacy much at this hospital so even though curtains are pulled, people bark at the top of their voices. The oncologist tells me my bloods are fine and my neuts are particularly good (they are the white blood cells which fight off infection). They can’t find an infection but they know I have one. It might even be a virus. Thankfully they give me the choice whether to stay or go home. I obviously opt for the latter although it turns out that involves a four and a half hour wait for antibiotics I already have at home to come up from pharmacy. Not good. I am released into the wild, navigating the hospital and car park in dressing gown and slippers and we make our getaway.

It transpires that while we have been gone, we have missed a parade of 50 or so tractors which have gone past the house. Now, the road in front of our house is small and requires one car to pull to the side if another is coming so the tractor parade is clearly A Big Deal. I am sad to have missed such a rural treat, even though it has left Mr Mason jnr and Ms Atherton a bit bewildered. Happily she has filmed a little bit of it for me so I don’t feel entirely left out.

The following morning, the ward sister, Bee, rings to see how I am which I think is pretty good service. My temperature continues to go up and down for the next couple of days, causing me anxious moments, but decides to behave and just leaves me feeling drained and worn out. I am determined that we will do some nice things over the weekend so book us a table for lunch at the oldest thatched inn in Lincolnshire. I ask if we can have a table for 12.30 but am told they only have one for 12.15. That will do. On our way, we go to the imaginatively named Chocolate Drop which is a chocolate shop/factory in a place that looks as though people just go there to dump old tyres. It really does not sing ‘chocolate of exceptional quality can be purchased here’. Today it’s the male owner who serves us and he is keen on making us eat as much chocolate as possible which is nice but there comes a time when we have to declare a truce and just buy what we like best. When we arrive at the inn, we realise we have been there before and are a bit puzzled by the strict timing of our table as there are lots of free tables. But the food is good and the fish we have promised Mr Mason jnr will be the biggest piece he has ever seen, certainly as big as his head, is honoured and enjoyed.

I am rapidly coming to the conclusion that I will not be able to make my carefully planned trip to Charing Cross every three weeks. The delay over chemo and the stupid virus all have conspired to show me that things are not so simple as I have hoped so today I am going to see my new GP (appointment booked online with GP of my choice within a week) to discuss our options.