Stan the sternomastoids turn

Back at the QMC today - this time for something routine - my pain clinic appointment . Think the doc got carried away this morning but at least it's done. As we don't know what the cancer treatment will be or when I've got an open appointment as opposed to 12 weeks time.
Had a wonderful busy weekend with Chris and the kids surprising them with a trip to Legoland , staying overnight at premier inn and spending Sunday at whipsnade zoo . Paying it for it with the sharp pains back in my side so dosed up on buscopan and pain relief and resting in my pjs watching strictly
Totally astounded by crowdfunding , it's paying for much needed treats with my family and giving them lots of memories , thank you so much

Struggling

Can't sleep. In quite a lot of pain and exhausted. The reality that this type of cancer is a death sentence and that Basingstoke is the only stay of execution keeps hitting me in waves . Wary of taking pain relief in case it causes constipation - a blocked bowel would require immediate surgery.
So here I am, listening to the three loves of my life breathing, going over it all in my head. The unfairness, the improbability of it all. The desire to keep fighting it, keep pushing back against it consuming me. Trying not to be swallowed by the black pit of despair . The realisation that although I look well the cancer is what makes me incredibly tired , the fact I can't control it, or what Basingstoke say. It's incredibly lonely in this place, in such a minority . Not wanting to burden everyone. I guess in this blog I can say it all what I can't say face to face

Official results and meeting with consultant

Ok, so now we have a medical name for Dolores, she's  known as Signet Ring Cell Carcinoma, which has spread from the bowel to the uterus, lymph nodes, omentum and peritoneum. It's rare, it's very aggressive and unfortunately too far advanced to treat the "normal" way with surgery to remove the tumour(s) and chemotherapy in Nottingham.

I've been referred to Basingstoke for specialist Cytoreductive Surgery (CRS) and Hyperthermic Intraperitoneal Chemotherapy (HIPEC) treatment.  We should hear back in 2 to 3 weeks to see if they think it's viable. It's known as the Mother Of All Surgeries (MOAS), and also The Sugarbaker Technique, which is a very major procedure, with the goal of trying to get rid of all of Dolores, keeping her locked up in her office and giving me a few more good years, with even the rare (that word again) chance of a cure. On the plus side I could get a free tummy tuck thrown in!

We're keeping everything crossed, now that it is an option, and we have a lot more knowledge of what's happening. They were impressed with my positive outlook and how we were asking lots of questions, and not giving in. In this battle a stubborn nature, along with being young, fit, healthy and a great support network will go a long way

Emma's getting muddy

My lovely friend Emma is getting all muddy in my name , let's support her 😘 https://fundraise.cancerresearchuk.org/page/emmas-fundraising-page-1238

Roll on Tuesday

Ok so next appointment will be on Tuesday and I guess we find out the plan . It's the consultant I saw over the weekend , will see what I make of him this time

Not starting TA course

Not sure if I said but this weekend really hit me hard and we've decided not to to do the course now . Need to focus on keeping me healthy and ( this bit isn't my forte ) but also rest

Not glowing

I'm pleased to report Tuesdays PET scan was a lot nicer than the CT scan last Friday and with none of the nasty side effects  . We were all kind of hoping I would glow in the dark or develop amazing mutant powers but so far nothing, sigh

Playing the waiting game again .The MDT meeting is tomorrow

Thank you Amy for the crowdfunding page

My dear friend Amy has set this page up to help with the cost of the complementary medicines such as hemp oil I'm taking to try and keep my immune system in good shape  . I'm afraid there's just no way to explain what this means to us , you guys are right there beside us



https://www.justgiving.com/crowdfunding/tracykaye

Glow in the dark Trace

Got my PET scan tomorrow at 3.30 . Will be radioactive so can't snuggle the kids for 6 hours after . Maybe I will get amazing powers and become a superhero ? 😊

Just to add *important *

the kids don't know that it's cancer . They know mummy has a poorly tummy and we think that's best . Please don't mention the word cancer to them , there is no need and it will cause them undue extreme distress
Cheers

I can't sleep aka it's all about poo

Ugh can't sleep. The problem with hospitals is PEOPLE ARE SICK. And on a colorectal ward that means the butt end . My room is next to the toilet so you can imagine the rest 💩💩💩💩💩💩
After my CT scan on Friday I got stabbing pains - and if I tell you we are talking labour contractions ( and I have a high pain threshold ) then you know what I mean . Call to 111 and they said we will send an ambulance .Unfortunately every pisshead in nottingham was unconscious  or bleeding so they got priority so 4 hours later ar 1am they turn up.At this point I cannot move but we get me in the ambulance and off to a and e. Thankfully chris had the presence of mind to pack a bag so my headphones went on because it's not the quietest of places
Much prodding ensues and some lovely drugs help. The thought is the gas they pump through the bowel in the scan  got stuck , can't see on X-ray and they want  to confirm no blockage so need me to eat,not be sick and do a 💩. By teatime Saturday the pain had gone and hurrah I finally went . They moved me from assessment ward to this one . They want to do another detailed scan as that naughty Delores had made herself quite at home and spread herself around a bit . At the moment its not looking brill , but as Chris  said we are still thinking positive and that of the numbers of people who do get  they those extra 1,2,5 years there is no reason I can't be me
Naturally we are devastated , a few weeks ago we knew Dolores  was here and by the way she was detected she had spread but until yesterday we didn't know how much . Our families friends are right up there stepping into the breach giving lifts , childcare and much needed love and support . If recovery was based on love there would be no doubt at all
So I sat here in this crap room after 4 hours sleep and I'm wide awake . Scared the nurse walking around 😂 She's made me a nice cuppa
Started reading the news , always stupid idea and if Im honest everything in the world doesn't matter anymore. It's all about me, but mostly my family . I'm sharing this as there is no running , no going away and I'm afraid I can't protect you all . We need you all behind us and so you need to know . Dont worry about texting , if I don't reply straight away I am probably stabbing Delores the Voodoo doll , or I don't know what to say . But every hug and thought goes straight to give Dolores a kick . You know when Tinkerbell dies in Peter Pan and everyone has to get her back by clapping and saying " I believe in fairies "? Every time you guys send me a hug or thought that's a kick to Dolores .
I guess  I'm saying bear with me , will keep the blog updated and please dont feel bad and you can text me,
And if you are anywhere near the ward today please bring running shoes and a rope and get me out of here !!!!!

Bugger deleted update . Had the second scan today , the MDT meeting where they assign consultant is next Friday so won't hear from them until the 18th probably . The plan is to start college next Friday as intended . Just been on a bear hunt in the garden with Izzy ( still can't go far from a loo 🙈) and after the diet this week celebrating by having my fave pizza for tea 😊

Ok , the story so far . I went for my smear test and it came back they had found highly abnormal cells that could be from the bowel or uterus . I was referred this gynae who took a biopsy and blood tests . They did a scan and they said they couldn't see anything unusual in the reproductive bits. So far so good .Until then I thought maybe they had muddled the slides up - I mean how did the cells get down there ? Walk ? When I asked the consultant he hummed and aahed... and that's when I thought shit this can't be good . The following day I was seeing the GP anyway and he did the same , with the sympathetic look and to be honest then I knew the bullet was coming - just not when . So we went on holiday and tried to not worry about the results due the following week .
The bowel clinic rang offering an appointment on Tuesday the 29th. Didn't expect to be more than a chat so Chris stayed home with the kids. I was kind of looking for any clues and when a nurse walked into my consultants room I guessed it wasn't good. It wasn't . I have bowel cancer which hasalready spread to my uterus . So the next step is CT scans to see how big , where etc . Rather than worry the kids with the word cancer we decided Mummy's got a poorly tummy, and I named the tumour Dolores after the thoroughly nasty Umbridge from the Harry Potter books
On Friday the 1st I had an thorax CT scan to see if Dolores has also worked her way up to my liver and lungs . Not had results yet. This Friday I have a bowel scan to see exactly what's there. In preparation for this I've got to have some stuff to clear bowels out so tomorrow and Wednesday will be spent on the lav
No one knows any more than this right now, as I know I will update the blog . Hugs are very appreciated but unless me or Chris brings it up please don't ask. Dolores is taking a huge mental toll on us and we are trying to keep going . We  very much appreciate the offers of help and rest assured we will ask for help with school runs etc as we need it . The focus right now is keeping everything as normal for the kids as we can. I'm starting my TA course on the 15th and I'm really excited

TTFN

Trace x

So hello and welcome
Since we discovered the existence of Dolores the bowel cancer a week ago our lovely family and friends want to know what's happening. It's quite exhausting , and distressing for Chris and I to keep repeating ourselves so we've given Dolores her own page. We will put updates, treatments , care plans  etc here
Thank you all for the amazing love and support you've shown us this week , it really is true what they say that raising a family takes a village . I am confident with you all behind me we can kick Dolores butt!
Love Tracy and Chris. X