Chemo update

we saw the oncologist on Wednesday and although he is happy with my progress he wants to wait a bit  longer for my surgery wound to heal and for the stoma output to be thicker . So I see him on 5th Jan with the aim to start chemo again the following week .Doc felt the sickness before my op was mainly down to the blockage in my bowel than due to the chemo which is good news .
So for now we focus on the wound healing and having a wonderful Christmas
Merry Christmas and thanks again for all your love and support

Tracy and Chris xx

The op, stoma and beyond

sorry it’s been so long since an update . On the 11th November I underwent emergency major surgery where they did a right hemicolectomy ,an end ileostomy and transverse colon mucus fistula. In short in 3 1/2 hours they took half of my large bowel out and fitted two stoma bags. It was all very rushed. I had been admitted to hospital as I was being so sick which we thought was due to the chemo . On the Thursday I was in a lot of pain and a CT scan showed a large bowel obstruction. At 1.30 -m Saturday the surgeon came over from the QMC and they said it was literally going to burst and they had to operate immediately . Woke up completely disorientated and completely out of it with pain relief . On Saturday 25th the wound started leaking after they had removed the staples closing it (30 stitches !) so now I have a district nurse coming every day to pack and dress the wound (ouch!)
Fast forward to Monday 27th and they let me come home . It’s been really hard getting used to the stoma as have had a few leaks , including in the night . From tomorrow I’ve got someone coming in to help me wash and dress - I can’t bend , plus I’m not allowed to lift more than a kettle as at risk of a hernia . It’s very frustrating not being able to do much but the focus for now is concentrating on the wound healing , all my insides healing and the Stoma’s settling down . Hopefully we can resume chemo in the new year . Very tired and I’ve learnt now that if I can’t keep my eyes open then my body needs sleep ! Thank you to our amazing friends who stepped right in and helped with the kids and came to keep me company , words can’t say just how much we appreciate it and how grateful we are

Trace xx

3am

Ugh awake again.
Friday was a tough day, saw my oncologist and visited the chemo ward . For the first time palliative care appeared in written form,god I hate that word . Got told off for not taking the laxatives - much talk of overflow and I feel like my bowels are a broken toilet . Soo less thinking and more just taking the cocktails of drugs coming at me. No idea how people work during treatment as blood tests, line flushes, oncologist and chemo as been lots of hospital trips.
We brought Ryan’s birthday sleepover forward as I wasn’t sure how I would feel after chemo . Maudlin thoughts of would I see another of his birthdays  .. as Alison says it’s ok to go there ( to THAT place) but you are not unpacking so mental shake and back on the horse we go. The kids are being really careful around my PICC line, it’s still very tender but healing . Flu jab today as oncologist said best squeeze it in before chemo ( surgeon had said no). The low residue diet is taking some getting used to but worth it if we can keep obstruction at bay .
Chris has done a spreadsheet of symptoms and meds and their side effects 🙈 in quite a lot of pain but I understand even from the first treatment the chemo will help reduce that
Time to try sleeping again , was in bed for 9 as I get so tired now

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PICC or George Weasley

I had my PICC line put in today. I was really nervous and said to the surgeon I've had 2 babies this should be a breeze. Her reply was I had chosen the babies and had no choice in this which makes a big difference. The surgical team were fab, kept me talking so I was amazed when she said it was all done! It's sore tonight like any cut/wound but at least it means no more canulas . Ju has ordered me some pretty covers - hospital just put a tubigrip over the dressing and they always look grim. No swimming due to infection risk and I have to wear a cover over it in the shower
More difficult to deal with is the change in diet - many staple foods like veg are simply no go and things like onion crop up in everything. It sucks but if I can avoid blockages and inflammation it's worth it. The paracetamol and buscopan can cause constipation so yesterday and today I tried to manage on half the dose but the pain won out so back to the full monty. It seems insane to have so much pain compared to three months ago but Delores is aggressive and has spread so I guess it makes sense
Calling the PICC line George as he had a fundamental part in Umbridges downfall

Next stop in the oncologist Friday and chemo nurses to prepare for the first session. Worked out that the Panitumab alone is over 2 grand a dose , it specialises in advanced colon cancer and metastases. I hate that I now know what ascites are , the omentum... It's all so scary and the more we discover the worse the outcome looks BUT as I said to the oncologist I am not average and we are determined to give the bitch a good kicking even if a cure is so unlikely we can shrink her and stop her growing

It’s chemo time

Tomorrow I get my PICC line fitted ready to start chemo on the 2nd. Terrified but glad we are finally getting on with the treatment . Ryan’s worried his friends will laugh at me when my hair falls out but I think I’ve managed to reassure him that it’s nothing to worry about and I won’t be upset by it

Can’t sleep. The last 48 hours in particular have been so fucking horrendous , thank god for my parents , sister and friends for pulling me through it when I was on my own . Incredibly angry my husband and children were taken away from me when I needed them most .
I won’t be the one explaining in years to come when I’ve gone that mummy wasn’t in those photos ( which I don’t want to see )because she was ill in hospital with cancer . Think that’s awful? Welcome to my fucking world right now

Here again

in city hospital . On Wednesday I started being sick and had awful pain so we went to docs and they sent me to SUC who deal with oncology . An X-ray showed a borderline blockage so I was on nil by mouth to give my bowel a rest . Lots of morphine later yesterday lunchtime they decided it was most likely to be severe constipation and to try eating and drinking again. Lots of laxatives later and I did a poo this morning , hurray ! Also saw my oncologist and oncology nurse who were lovely.   Had a CT to see if def poo and not Dolores causing problems by making kinks in my bowels. If all is ok we can process with chemo in the next few weeks . They will put a PICC line in which saves doing a canula each time . They are starting with a mix of irinotecan, panitumumab and 5 fluoluracil. Unfortunately the average prognosis even with chemo is 12-18 months but I’m not average.
I’ve got to stay in for the weekend so they can keep an eye on me. As long as the pain is under control and I’m not sick they are good signs  . I’ve got a special diet to follow that’s easily digestible so have a list of things I can’t eat that are hard to digest - unfortunately it includes many of my favourite veg . On the plus side I can eat cake !

So the letter came from Basingstoke today and it's  there in black and white . Planning Ryan's birthday and part of me is wondering if this is the last of my babies birthdays I will be here for
I've got an appointment on Friday with oncology to get chemo in place so big girl pants on and try to push the nasty thoughts away. That bitch Delores is all over my abdomen so we need to find a way to get rid

The scores are in

 basically Basingstoke is a no go as Delores is in the small  bowl which cannot be removed ( the idea is a complete cytorrduction where they remove all of the cancer in one go) as it is the odds weren't that good for me anyway as only 1 in 5 can be cured , it often returns and it means over 12 hours in surgery etc
So we go for chemo in Nottingham . Apparently aggressive cancers generally respond well so keep everything crossed as we climb the next mountain

Quick update

had laparoscopy tues evening didn't go to theatre til 7.30 pm returned to ward 9.30 pm. In a morphine haze at mo

Basingstoke

What a day  . No beds on ward so spent the day in the admissions lounge . No one knew what each other were doing but the upshot is eventually had an MRI and a chest X-ray , results not back yet. Had a chat with a registrar and feel a lot more informed about what the tests were for, what the possible plans are. Laparoscopy tomorrow afternoon then the big chat .

Bucket list

Tracy's Bucket List 

Take the kids to Disneyland 

See NY Rangers play at Madison Square Gardens 

See the following bands and go backstage :

NIN

Depeche Mode 

Incubus

Faith no more 

Go to Harry Potter studio tour 

Smash a building with a wrecking ball 

Go glamping in the Lake District 

Watch the sunrise and sunset in one day 

Attend a murder mystery

See a musical in London 

Sit on the bench with the Panthers during a game 

Read the top 100 banned books

Drink a pint of Guinness in Ireland 

Have afternoon tea at a fancy hotel in London 

Visit the Tower of London 

Visit Barley home of the witch trials 

Go on a second honeymoon to Stratford 

Watch England play a test match 

Go to Reading festival or Download

Go to Wimbledon 

Well here we are at the hotel and have been to the ward . Rather disturbing as lots of old people looking extremely sick - really hit home how mammoth it all is. Think both of us wanted to hightail it out of there . So got to  be there at 10 for MRI , big girl pants back on in the morning .All still feels quite dreamlike ( nightmare ) and unreal , in the car we were talking about how insane this is , to get a rare aggressive cancer that's already taken root in so many places , how there really is no positive spin to put on it as it truly is as bad as can be
Ordinarily being in a hotel just us would be so exciting , whilst it's certainly nicer than being on a ward both struggling to enjoy it . Desperately missing my babies, think will eat as no breakfast allowed tomorrow then head back in sand tonight

Basingstoke

Got a call today asking me to go down to Basingstoke on Sunday evening for a MRI scan and possibly a laparoscopy then coming home on the Wednesday  . Nanny and grandad are coming up to look after the munchkins but it's a step forward ,albeit a scary one

Please stop asking about Basingstoke , if I have any news I will share it here . Even if I do get the go ahead it's not as straightforward as people think - it's major surgery and we will make the decision if and when .Going on about it is really getting to me and I feel awful enough with this cold as well.
On a positive note thank  you to our lovely friends for meals, cold relief and hugs xx

Grouchy

Feeling grouchy today. Ive got a cold and you know how crap that is even when everything else is ok. Constant upset guts. Izzy was up all night coughing and although she was in Chris excellent hands I felt crap I couldn't look after her. More bad mummy and wife thoughts as I've snapped at them all day

No news from Basingstoke , will post here when there is. I don't want to think about it. They could say no and I'm not investing time and more worry ( it terrifies me) into it until we know either way. So please forget about it for now and stop talking about it. Plan B is still a possibility

Going to attempt some sleep and face the world afresh tomorrow

In a strange mood today . All of us have colds and aren't at our best, nothing feels right . Should hear from Basingstoke this week . For the first time in ages there are no appointments this week. Still trying to find the new normal for us

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