I’m on the journey

Hi Sarah 

looks like your a little ahead of me on your journey I was diagnosed on the 4th Oct spent a month in hospital having scans etc and being fed intravenously as unable to eat, now home with a feeding pump. Hopefully starting my chemo next week but there is a waiting list. 
I’m not looking forward to chemo and hope I don’t end up in A&E but expect to feel pretty wiped out !,i do hope that your tumour has shrunk and your right keep positive vibes it’s all we can do ! Will be interested to follow your journey. 

wishing you well take care 

Tricia 

Keep it up Sarah! I'm eight weeks post op now and will be starting the chemo again soon. Not looking forward to the fatigue, the weight of hair loss tbh but hopefully it's all worth it 

Hi Tricia

I’m so sorry to hear you ended up in hospital for a month, hope you’re managing now you are back home. It’s awful isn’t it, was just such a shock to hear that I’d got cancer, and I’m sure it’s been the same for you. 

I can’t believe there is a waiting list to start chemo - just goes to show how many people are on this journey with us I guess. The chemo is just as I expected it to be to be fair, the first two were ok, apart from the hair falling out after second dose but the third has definitely taken it out of me. Everyday though I know I feel a bit better than the day before so I go with that. 

Hope everything goes well for you when you start and keep looking forward and being as positive as you can 

Sarah 

Hi Bilious Bob

It’s one hell of a journey isn’t it! Did you have Flot chemo too? Did it make any difference to the tumour? I actually can’t believe I’ve only round left, it’s actually gone really quickly but sayin that it’s probably because I’ve been asleep so much

how was the op if you don’t mind sharing- I think that’s what I’m actually dreading the most. 
best of luck with your final round of chemo 

you’ve got this 

Sarah 

Sorry to hear your hair fell out initially that was me first concern (stupid really in the great scheme of things ) but think it’s inevitable. 

having my picc fitted tomorrow so a step closer ! 

Several people on this site have come out the other end and I find their stories an inspiration and it keeps me positive. 

The GI team were great and that helps me feel better about the surgery.

its good to know we’re not alone take care stay strong 

tricia x

Hi Sarah,

I am almost a year ahead of you. Diagnosed in October 2023. FLOT started in December, surgery on 29th February and finished post op FLOT in June. I won’t try and pretend it has been easy. It hasn’t. It has been the hardest year of my life but I’m still here (a year ago I wasn’t sure I would be) and slowly improving month by month. Like yourself, I did a lot of sleeping. There is nothing easy about either the chemo or the surgery. Your body takes a real battering and sleep is its way of coping so just go with it. Even over 8 months post surgery I still frequently take afternoon naps. You have a tough journey ahead of you but, with a good support team behind you, you can get there. Just take one day at a time and keep heading towards the light at the end of the tunnel…

1. Hi Sarah29. Sorry to hear you’re also onboard this horrible journey. I’m 12 weeks today post operation and back on chemo. The recovery from the operation is hard there’s no point beating around the bush, I was unfortunate in terms of things in regards to the epidural which never worked in the both attempts they’d tried so coming round and the first few days after the operation was extremely painful, but was quickly managed by pain medication on the buzzer as and when I felt like it was needed. I had the fully robotic procedure so my scars are minimal. In total I spent 13 days in hospital with excellent care from the ICU staff albeit it was like a disco come nighttime which was hard to sleep against. My histology prior too the operation was T2N0M0 with speculation of T3N0M0 due to the more scans I had the more it had shown compared to my first one’s. Chemo was effective and had shrunk the cells inside the tumour by 50% and the size of the tumour had shrunk from the initial FLOT chemo. After the operation the histology was pretty good in terms of things. I had R0 resection margins with 2.5cm and 13cm clear either side. I had 61 lymphnodes taken out and 0 shown cancer the tumour was 42mm long and 11mm wide at the widest point and the cells was classed as moderately differentiated the tumour had shrunk from sizes given at the results of previous scans. I quickly became fixated on this and googled as much as I possibly could which just made things worse. At the end of the day having this operation is apart of the curative path with hope of a wonderful life ahead as a new normal. A small price to pay in my opinion as hard as it is! I’m now back on FLOT chemo as mop up sessions but after this infusion I’d spent 3 days in hospital getting sickness under control which thankfully on day 5 now after chemo it’s slightly subsiding. Being only 29 I want to smash this last lot of chemo as much as I possibly can but going back too 100% strength for me wasn’t the right thing to do. So going forward any further chemo sessions are at 80%, but because chemotherapy is somewhat diminishing returns I’m thinking of stopping after 3 which leaves me the new year to fully attempt a recovery mentally and physically. I have a little lad who will be turning 2 in January so this Christmas is somewhat special and my mindset has completely changed! I cried at the snowfall as it’s one thing I wanted to see this year! I also think it’s very important to have things too look forward too here I can reference CB and his trip to Tenerife 8 month post op! Eating is really hit and miss I was a big food lover before but not so much now but come January after everything’s finished and the new year is upon us I really want to start cooking and this is something I’m looking forward too! Eating in general is okay everybody seems to be different with this aspect it’s more about the timing of foods for me and learning what my body now can handle and can’t handle. Sorry for rambling on it may or may not help in anyway but I wish you the best of luck on your journey and I hope you smash this little bleeder.

Many thanks, RichH. 

Rich 

another inspirational story, I had a tear about you seeing the snow ! do hope you have a wonderful Christmas with your little boy it’s a very special time at that age. 

It is certainly a journey but wishing you a continued recovery and you enjoy your cooking again (and eating it )

Tricia 

Hi Rich,

I hadn’t realised you are only 29. That’s very young for this type of cancer. I was 59 when I was diagnosed. Kinda screwed up my wife’s secret plan to celebrate my 60th but she has rescheduled that for next year. I don’t know of anybody who managed 100% FLOT post surgery. It’s probably only because of your young age that they even tried you on it. I was 3 cycles at 75%. I truly hope you have a wonderful Christmas with your wee boy. Your comment about the snowfall made me think about when I was diagnosed last October. One of the things that went through my head was if I would get the chance again to walk barefoot on the sand and paddle in the waves. The first time I did brought tears to my eyes too. Something like this makes you realise that sometimes it’s the little things that mean the most. CB

What a bunch of old soft buggers we are eh? And that's just the guys!! LoL