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