Horror & Hope

From about a week last Friday around the 15^th, I noticed a strange lack of ability in my legs, just strange nothing more. A lack of muscle usage maybe and I dismissed it and carried on. It got worse.

Hilary was right in her comments on the blog. I didn’t mention the fact that I was very worried for my Lib Deb family who were hosting this years Lib Dem Regional Conference due to the fantastic prior events ruan by Paula, the team and myself. The leader Tim Farron was also coming and nothing had been brought or planned not a single tomato!

Paula was distraught and rightly so, she has her own health issues and the health issues and worries of her son, Dylan. I couldn’t leave her, I had to help. So we planned the best we could, pulled on some heartstrings, begged and flirted and sorted it out.

Friday at 8 am Steve and I enjoy morning cuddles in the Love Tub. At 9 am Paula arrives with ingredients to make 100 flapjacks. Steve is on hand for mixing as neither Paula nor I can do that heavy work and we churched out about 80 for £10. Now there’s profit margin Lord Sugar!

Cooled and drizzled in milk and dark chocolate we baby-sat them until Saturday morning.

Saturday Rebecca, Steve and I join the kitchen team. We prepped; set up, laid out and customer flow the day within 2 hours flat. Returning home for 11 am to welcome Richard, Louise and then Chris and Bethan. With no-one needing to know the crisis we had saved. All going to plan but as that days post then states it all started to go wrong and wind stopped play.

So I don’t need to re write that but just cut and paste it so that I know have the details behind it. This is just the post entry of Friday night to remain you what happened:

I drift off and now it’s too late for me to join Steve in going to see Chris wrestle and I really wanted to do this but there was no way I was well enough to go, so Steve had to go alone, this upset me as it was something that really wanted to do. Richard returns from his meal with Louise but yet again I’m in so much pain that it’s so hard for everyone to see.

I continue to try to deal with the pain and extreme fatigue; my weekend plans of family fun ruined. Steve wakes me at midnight to take my last drugs. I take them and by now I’ve had enough too and just take 5 ml of oral morphine. I tell Steve to go to bed as he needs his sleep and I remain in my dream machine waiting for the relief of the morphine. This starts to kick in within about 10 minutes and I regret not taking the morphine earlier but morphine slows my bowels down and round and round it all goes, never ending cycle of pain, bloating and swellings.

Once the morphine had kicked in I felt really bad as I hadn’t been on line at all or even looked at my phone. I hate not replying to everyone and thanking you all for sharing. I picked up my phone and started to read through the emails and I just sat and sobbed and sobbed and sobbed. Beautiful words and love, friendship and support come flooding in to my house daily and I consider myself so blessed.

You all say how strong I am and that I am inspirational and I’m just not at all. I’m scared and sad. I hate the thought of not being alive with my loved ones and leaving them. The withdrawal of vital drugs to others behind me in the chemo queue just upsets me so much and whilst I have been lucky by 3 weeks the thought of others not having that treatment available just makes me cry. So I cry and cry and then I have a nose bleed. I’m so sick of feeling ill. I had let everyone down that night by being ill and I just find myself needing to sob.

After I had pulled myself together I decided that I need to see if I can get my bowels moving again so I stay up and do a self enema but whilst it worked it wasn’t impressive.

I decided that I have to try to sleep and go to bed at 2.15 only to wake up at 4 am but at least I slept. So after 11 hours of pain and agony finally my body is under control again. I have been okay so far today and I have managed to catch up with all your comments which mean so much to me and sorry I didn’t reply earlier plus sorry if I woke any of you by replying between 4 – 6 am this morning.

Anyway it’s a full Sunday dinner here courtesy of my mom. It’s been lovely having Richard home for a few hours and I’m excited as he is also coming home next weekend to help Steve build Daisy Den :-).

Whoever sent me the lovely china mug I really appreciate it but it arrived broken and we will try to contact the post office to sort this out but I don’t know who sent it but thank you anyway.

The calendar has got you all super excited which is fantastic and the blog is getting over 1000 hits per day during the slow reveal. Thank you all for supporting me but we have to wait 3 weeks for the print run and then get them out so hold on promoting it until I can get the pre-order form up etc so we can take orders.

And then I fell silent to you all and here’s what only I remember:

We had swapped the dosage of Gabbi on Saturday working with the Ian Rennie nurses ahead of the meeting on Monday and chemo commencing as planned.

Steve was on earlies but had arranged cover for the pain specialist appointment.

I woke at 2.15 after going to bed at midnight as I was too tired to do ‘Wack a Comment’ and I could do them at 3 or 4 am when the world was asleep.

I watched every hour go by waiting for Steve. I knew I was not strong enough to even attempt the stairs so Steve got my clothes.

The minutes ticked round and I was feeling so unwell and dreading even getting to the appointment.

I’d been good and followed the new drug plan as directed.

By some miracle we made it, I don’t remember anything really apart from the appointment was held in ‘Wiggy woman’s’ room. Poor Wiggy woman, did she get kicked out of her room?

So from that appointment we went onto Sunrise where Jan was there, she took one look at me and the others and they were worried.

Jan took me to bay 2 and I cried on her. She said that she thought we should delay chemo, until Wednesday, I instantly said ‘no’ as I needed to go to Guildford on Friday (the chemo bottle has to be disconnected two days after). We were offered 9 am Tuesday; excellent I thought I could still make it on Friday. So Tuesday agreed to and then she said hold on I’d better just check with the pain specialist. Jan returned repeating her request that chemo is delayed by a week and I was to go home and rest. To sleep off the double dosage of gabbi and I should be okay by around 4 pm.

Excellent plan and I’m off home to sleep it off.

So at home at last and I sleep in dream machine with Steve at work. I remember seeing Richard in his Army uniform in our kitchen with Steve but I thought I was dreaming. I remember trying to open my eyes to say hello to Rebecca who had returned from work, but I could have imagined it.

I remember a feeling of the kitchen becoming cold and full of men, strange voices green dressed men, a siren. Quiet panic, Steve talking and a man asking if he can listen to my chest! I’m in a vehicle next, Rebecca is talking what I think is rubbish to the green dressed men.

I hear the work septicemia, shit!

I’m going to hospital, It’s me they are talking about, I look around me I strapped in, where’s Steve? Why has he left Rebecca to do this, where’s mom, mom, mom, mom, and I’m gone again into a blackout. Next thing I know I am in a strange shaped long room, Rebecca is there. A drunken woman flies past on the floor screaming with her man trying to control her, nurses behind him behind her.

Bloody hell, I’m going on or is this Jeremy Kyle??? Rebecca stands and closes the curtain but she can’t stop the sound of the woman crying and screaming which just goes on and on and on.

A man appears; he asks me where I think I am, Stoke, I reply

He when starts to examine me but he asks before he does anything. He even offered to leave the room whilst Steve pulls down my pants. Now I maybe 48 but surely my bits are not that bad? And what if I said no? What would he do then?

What should have taken ½ hour an hour of questions and no fannying about took what seemed like forever and lots of fannying about. Bedside manner has a place. Quick diagnosis is not the place for it, in my opinion.

So fannying about over. I and screaming drunks amongst others am left with a qualified nurses and an almost qualified one. One 4”5 and the other about 5”4’ I am guessing of course but I bet I’m not far off. So now I need a wee of course. The nurse fetches a bed pan and it’s at this point I realise I can’t move anything, I’ve lost all control over my body. Oh no I’m paralysed.

So bedpan there ready all I have to do is lift my myself two inches up and side over onto a commode but I just can’t do it. The nurse just stands there, she says she can’t help as she can’t touch me it invades my personal space. Rebecca at this point is just amazing, she takes control and lifts me but I’m a dead weight and so I flop back onto the bed, exhausted, frustrated, humiliated and paralysed. Get the bedpan. Now this again is a complete waste of time, it’s an inch deep shovel shaped blue thing that is placed underneath me and all I have to do when it’s in place is sit up and wee. Shovel pan in place, Rebecca takes control again and lifts me up. Now I can’t wee! FFS just have a wee, Rebecca suggests after about 10 minutes ‘just wiggle it’ I do and I wee, perfect, wee over I flop back and cover myself in wee! Why I didn’t just piss myself in the first place is beyond me. As I am in the Jeremy Kyle waiting room for about 48 hours this same routine and pathetic pretense to protect my space means that three times I just get covered in wee, mixed with a little poo and Rebecca just deals with it. At one point I look down the bed and she has her head on the bottom of it, I can’t see her face just hair as she is so exhausted she tries to sleep but be with me still.

At some point mom arrives to take over. She has turned the back of her car into a bed for Rebecca and the swap over. I wake up to my mom holding and waving a floppy egg sandwich in my face ‘try this it’s egg’ I snap at her ‘mom I’ve just opened my eyes to you waving egg at me, stop it’ Oh no, now I’ve upset my mom. Eventually not sure what time it was we were told we were moving to ward 10.

Quickly and very efficiently my belongings and we were moved in one go.

As soon as I hit the ward a wonderful nurse got me settled, got the commode, lifted me up and on it within seconds, I cried, she said don’t worry we nurse the old fashioned way. As simple as that, why don’t we just let nurses, nurse, and teachers, teach etc, etc why does every government feel the need to meddle and interfere? Like they want to be the ones who save it. Well the truth is it all just bollocks and if we want an NHS free at the point of contact, with all needs met for you, all advice laid out should you be given a chronic diagnosis. If you want the best then you can have it but you my have to pay an extra 10p in every pound you earn. But would you not do that willingly if you knew every penny went straight to them? You would save more than that a year by saving on charitable donations to Macmillan alone! Where did the £215 million pounds go to last year? Just redirecting that money alone would save our NHS for a year. The nurses should go back under the public sector and every town should have it’s A&E returned to full operational service for the people of that town. We have paid money into the system for a local service, not one 17 miles away like here in High Wycombe. This is what our town was lumbered without by the last Labour government. Who said it’s not possible to run an A&E at Wycombe? Well I say ‘yes it is possible, nothing is unachievable if you decide the outcome is always going to be yes whatever they throw at you.

See now! I’m really mad and if 2/3 of this world don’t have access to running water and a single woman walks miles to collect a jug of water for her children and she walks for miles. Then show me a man who wouldn’t ensure he left a fully functional hospital for his generations to come from birth to death on the doorstep of his chosen town as his gift to his family. I say power to the people of this land. Take the power over your NHS, our NHS away from the politicians who just play political football with it every 4 years and give it back to the people who truly care about your town. If your local MP said ‘no sorry it’s just not possible, then next election, kick him out cos he is not representing you, your family or what you or them need. Sorry but NO is NO longer good enough for me, it never has been. It’s our services and our families’ future, it’s too important to keep getting it so wrong. The power should go to the people you elect at a local level. Okay so I don’t have all the answers but I’m almost there. I just need a ‘tah dah’ moment with Mr Wonderful when I get out of hospital to fully complete my rant!

Okay so I’m on ward 10 with nurses who know how to nurse. I do secret exercises to get strength and power back and slowly over the next 3 days I get better everyday, slowly, very slowly but everyday I’m stronger.

I’ve had a CT scan of my brain, which confirms I have no tumours on my brain. I’ve had another MRI scan to confirm the tumours are not blocking off my spinal cord. The have mapped my infection and I’m on antibiotics tailored to the bug that gave me septicemia. Now I will remain here until they say I can go home. I’m being that good. I want to take the worry away from my loved ones.

So this post will go up an everyday I will continue the two Calendar pages per day theme to make you all smile. If I can post more I will but no pressure as I just need to get well and strong again ready for chemo, as without chemo I have no chance of beating this. I know you will all understand for just a few more days.

I do apologise, I’m so sorry but I’m your Mrs July. This photo was a private shot taken by Steve on one of our many holidays together. He just loves the natural composition of the shot and as he is the final editor I have no say. So I’m your Mrs July 2016.

 

 

Now this is far more exciting. As his face is showing and he is in the ‘Cancer Free’ video, you all know and love him. I very very very proud to give to you you Mr August, the one and only ‘Stud Muffin himself, my kids adored Uncle Peter. Photos taken in Australia. complete with hand cuffs and a very saucy, cheeky grin. Your Mr August for 2016.