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.