Interesting – as usual

Today was VERY interesting; I have started remembering things.

Places I've been to - I remember what we did there; going in the antique shops, having coffee and this time I am so much calmer [that’ll be the old brain].

We had very English coffee with HUGE sandwiches in Ashburton.

It is becoming more ‘real’, even when I can’t speak entire sentences, I can give it a good old go. After 4 years I am getting more tolerant. I’ve stopped feeling like screaming.

Life, as I know very well, goes on. And my brain MUST be getting better? I hope so.

The 5th day…

The 5th day started brilliantly! Did a design thing! Had help from Mike with the ‘Big Lottery Fund’ stuff – new .esp had to be changed back into an old version. Thanks for that dude!

And some painting in the shed on our new chairs. Good things. Except Bear ran across the entire lot. Hmm

And I have had lots of people sending donations since last night. I am so CHUFFED!

Also, people are taking the Living with Aphasia info and passing it around. Just as good as money sometimes

Good day ❤️

P.S.: The Quay? Mostly raining…

Morning peeps!

The snow is still here - freezing! So we're all at home right? Nice!

If you have time, have a look at my story. If you can, please help me to raise my aphasia page? It's making me so excited to actually even do this update - yay! Let's see how it goes today!

xx

https://www.justgiving.com/fundraising/sandhy-robinson-jones

5th fundraiser: Top Rank Revival Night II

Grr – something is wrong with Blogger – no-one can post to the stand alone pages and WLW doesn't support the 'new page' function [you can do that in Wordpress], so I'm having to post this event here instead. I think the Google staff may be eating too many cookies or something…pay attention Google! Everyone is getting rather peeved about this!

Anyway! Not life threatening eh? So, Vicky, my step daughter, and I are doing one last JOINT fund raiser [well, I THINK it’s the last! I might have a mad moment and do another...] before the 400km cycle across Kenya in October. October seemed so far away last year, now it’s positively LOOMING. We have to train for the cycle now...difficult to fit in around work and I am quite worried!

The last Top Rank Revival was brilliant. We made loads of money for Vicky's fund, but the best thing was that the evening was such fun, as we had overwhelming support from lots of local people, including an entire Scooter Club and the Sentinel. If you couldn’t make the last one, this is a must, as we shan’t do another.

There will be Top Rank II t-shirts for sale at the venue, a raffle and loads of fab music from our wonderful DJ’s, Chris Williams and Andy Mic...the Original Top Rank Djs. The atmosphere will be great fun, and Ant Munday, [our BIGGEST supporter heh heh] is selling tickets at the club in advance for £5.00. On the night, they will be £6.00. Oh, and there’ll be a raffle. Vicky and I have tickets too - please email for info.

Please spread the word? Thanks!

Every penny donated helps someone's sister, daughter, mother, friend...to survive ovarian, breast or cervical cancer, or helps towards finding a way to diagnose it earlier or even cure it. ALL FUNDS GO TO RESEARCH into these three devastating cancers.

Thank you for reading this, and thanks to all of you who have donated already!

Look forward to seeing you on the night; if you can’t make it, we’ll be sad not to see you, but if you’d still like to make a donation to the Woman v Cancer fund please see either my or Vicky’s justgiving pages [it’s completely secure to donate on-line].

Please forward this info to everyone you know! Thanks!!
Sandhy and Vicky

enough with this waiting now!

Every morning, the FH brings me a coffee in bed. I may have mentioned this before. It's my treat. Every single day. Without fail. It's one of those things that is so delightful that I never wake up without thinking 'yay'! I think if I woke up and the coffee wasn't there I would think he'd died!

So. What? Ah yes. This morning was a little different. The FH was in a state of High Dudgeon. Unusual for him. Usually he is very calm. Turns out he was rather peeved [this is an understatement!]  because I STILL haven't had  a letter from Renninson to tell me when my pre-op appointment is, nor when my surgery is. Hmm. A husband who is stressed and worried is not a good thing. Action stations! I am not sure why, but since Tuesday I have been quite chilled about the 'Situation'.

Actually, I have been strangely calm. I am not sure if this is a good thing or not. I feel almost disassociated. At first I was shocked, upset and afraid. Oh – I was also quite furious at the thought of having to go through chemo blah de blah again. I think it took me 3 weeks to get my head around it. Christmas was a blur. But this week I came 'back'.  Odd. But there you go. Nothing much odder than a cancery type I think – well, apart from Ugli Fruit.

so, this afternoon I rang my Clinical Nurse, Gail [she works for my surgeon, Mr Renninson] about the surgery and pre-operative appointment.

First, the GREAT NEWS is that they found NO other strange things on the MRI scan I had last week. The MRI scan is a lot more detailed than the CT scan I had in December, and I was a little worried that they might find ‘something’ somewhere else. Lungs, liver...whatever - you can imagine. But we are still with just that one little thing. So that is excellent!! woop woop!

Second, I will have the majority of the pre-op appointment by phone, done by a triage nurse. So I don’t have to go into the hospital for that. Also excellent.

Lastly, the surgery is scheduled for the 1^st February. Which is only 2 weeks away. It could be delayed, but at least I am in the system. All good news so far. The FH is looking far more chipper, and that works for me.

I know I am a bit weird right now [my communication skills appear to have disappeared], but I am quite cheerful, pretty positive and hoping for scar tissue. Sorry – no amusing picture.

update

I get such good service at my hospital. Actually I just learned today [from John Renninson] that they have been named a Centre of Excellence for Gynaecological Cancer. So, I am very glad I live in Exeter!

Right – what happened. We had a bacon and eggs and toast and coffee in order to be fortified for the meeting. I felt like going in my dressing gown. But as it's 3° out I thought better of it.

We met Renninson, who had come in specifically to see me and have a chat about the Scary Scan Thing. I am not sure why, but all the specialists were wearing striped shirts and striped pants. One had on a bright pink waistcoat and looked very designery…with a little goatee no less. Very festive fellows.

Renninson said that they can see something on the scan, what appears to be a 'thickening' where they had to [his words] "rip the tumour off the things it was growing onto". Ugh. So it could be scar tissue. Or it could be a recurrence of the cancer. But his odds were 50/50, and that's really good coming from him, as he always errs on the side of  caution. Worst case scenario is that it's a recurrence. Best case is that it is scar tissue.

The plan is that in January I will go for another MRI scan. He discussed doing a PET scan with me thanks Nat!], and isn't keen on doing that, as he said it shows up 'hot spots' but it still wouldn't tell him for sure whether or not it is cancer or scarring. So, a pointless thing to do in my case. And I would rather have less scans if possible, so that's ok by me.

So, the MRI; then we will have a pre-op meeting [where I get to see all the scans, yippee], compare the scans, discuss what's going on and then he is going to do a laparoscopy. Yay – 'minimal invasion' sounds good to me. He will put the laparoscope in through my belly button, then another one [or two, depending on how he gets on] lower down in the abdomen. The difficulty he may have apparently is because I have had such major surgery, there may be a lot of scar tissue getting in the way. Lets hope not.

He will then take a sample of whatever it is [the SCAR TISSUE!!] for a biopsy. So, if all goes according to plan and no bowels get punctured etc. I will be in and out in one day. Then we will know what it is [scar tissue!!] shortly after. Renninson was quite nonchalant, and said he doesn't know what it is, but if [worst case] it's a recurrence, WE will deal with it. Cool.

We will. I think I startled Renninson rather, as I gave him a big kiss. Well, he is saving my life :o)

We both felt MUCH better after the meeting, raced off and did a fun last minute Christmas shop, then went for tapas and wine at La Tasca. Then we came home and I had a zillion photos taken by the Times photographer. I think it's going to be in tomorrows paper!

I hate [really hate!] waiting

well, today I got a tad peeved with the 'waiting' scenario, so I called my surgeons Clinical Nurse Specialist, Gail. It's always an answer machine, but they ALWAYS call back the same day. Bless 'em.  So I left a message basically saying "aaargh gimme my results".

An hour later Jackie called me [there are two, Jackie and Gail] to say that Mr Renninson would be looking at my films on Tuesday. I know this is their big 'meeting' day, from old experience. I was just hoping they had stuffed me into THIS Tuesdays big hanna hanna. Unfortunately they had not. Jackie went on to say that she could not access the radiologists files, so she couldn't give me any information, and that, yes, it would be better to wait for Renninson's prognosis. But the way she said it made me nervous. But then again, anything could add to my nervousness right now, so what can you do?

Fuck!

What do they think? It's been TEN days! I had the scan last Tuesday and then just forgot the damn thing?? Trundled on with my life with nary a care? Just became Mrs. Blasé? Well, I did not. I have been hanging on a thread every time the post arrives. Every time the phone rings. Aaargh! Merde, this last few weeks have completely sucked. First, no contract, next the exploding toilet [yes, yes I will tell you about THAT in due course], then this. Bugger. And that's putting it mildly!

So. Until Tuesday. In the meantime I shall likely be impossible. Sorry. Not.

in the meantime….

we went to Brighton the weekend before last. Our friends have an amazing apartment there. I didn't really know if we should go or not – we are such a miserable pair of so-and-so's at the moment. A: it was the weekend before my CT scan appointment, and B: I'd just discovered I am to be unemployed as of December 31st, so I wasn't sure where my head would be at [in fact I was so worried about my 'head' that I went to see the GP who gave me some meds 'just in case'. I felt as if something had come loose in my brain]. I am already worrying about finances. I didn't think there was room left in my head for any more worries, but it seems that there is infinite space for that! No room for remembering things, but plenty for  stupid niggles. Annoying.

Anyway, after a small discussion, we went – and we were so glad we did! Jack and Bill gave us a lovely weekend. It was like a mini holiday – they really spoilt us half to death. It was such a relief to be away from the house, such a delight to look out the window over the Lawns directly onto the ocean. We just chilled out the whole weekend; the most energetic thing we did was to have a wander round the Lanes. Sunday was sunny. Monday Aj and I collapsed and Jacket and Bill went off and did stuff. I don't think I've ever spent an entire day doing NOTHING – not that I remember. It was strange, but we patently needed it. We are both exhausted. The waves were 20 feet high. The view was spectacular, even in the pouring rain.

And Bill cooked breakfast every morning for us [my favourite thing!] and Jacket was a wonderful hostess. We came home lovely and chilled out. What would we do without friends that just DO stuff for us? We'd be much poorer.

Here's the Room with a View. Amazing to just stand on the veranda and look at the sea.

Then we got home. Back to reality. Bang. Next thing: the Christmas dinner! And I am STILL waiting to hear about the CT scan…bah.

step 06: CT scan results

Wednesday 13th February:
Nervous nights sleep Tuesday night. Off to the appointment to see Mr Renninson to get the results of the CT scan and see where we are. Had to wait until the big meeting of all the specialists had taken place on the Tuesday, so I was lucky to get in on the Monday, or it would have taken another week.

Apparently the ALF is so big that they can’t tell if it has grown onto other things. Not a good thought. It’s pressing against everything [that’s why I am so uncomfortable and constantly running to the loo]. So the plan is to remove the womb, tubes, ovaries etc like a full hysterectomy, but he can only decide what else to remove once he’s opened me up and can see what’s going on. Sitting hearing this little lot was shocking for both of us – I was hearing it from another planet almost. Anyway, he said that he may have to remove my lymph nodes, and maybe some bowel, if the ALF had grown into it. Hmm. More ‘out of body’ hearing effects. Feeling rather like I may topple off the chair. Renninson explained everything very clearly and answered every question patiently. They don’t mind if you ask lots of things, and there is no feeling of ‘hurry up, I’m busy’.

The worst thing [at that point] was when I asked him if he would be making three cuts across my abdomen, as I’d read on the ever-informative internet. He looked a bit surprised, and said no, it would be a vertical cut, from either my breastbone down, or my navel down. Oh yuck! No more bikinis for me then! [your mind does these things – as if bikini wearing is at all relevant!]. Aj asked a few questions of his own, and by looking at his very pale face I could imagine what mine must be like. Then we trundled out. Straight to the pub to digest everything and phone my Mum [poor thing – have a nice day Mum, NOT] and brothers. Then pour some wine down the throat whilst feeling like a bomb just fell on my head.

Managed to remain quite calm all day, but in the evening I had a bit too much wine [a LOT too much], and finally let loose in a howling mess. Andrew had to deal with a sobbing wreck until I finally tottered off to bed. But I felt much better the next day, so must’ve needed to let off the steam I think. Crying doesn’t help much usually, and uses all your energy up, but I think it can be handy every now and then. Wouldn’t want to explode due to all this building up inside now would we? Messy...