Am I worrying?

Hi Karen,

I had 1 out of 14 nodes positive but similar to you it was next to the tumor. I think because it had gone through the bowel wall T4 i have chemo as it was interacting with blood vesels, i think thats why im having 8 rounds.

I cant even think of my lad without getting upset, honestly ive waited so long for him to get to 5/6/7/8/9 so we can do the things he loves to do like going to watch football, taking him to watch the planes at the airport, honestly its just heart breaking and i try not to show anything in front of him, he sees my scar on my stomach from the op tho and i can see in his eyes it worries him.

I was told to avoid crowds during chemo just incase i catch something from them, and to limit my time in certain situations which i try to do. I did see my friends last night for the first time since my operation which was nice, but i felt uncomfortable in like a bar with so many people so i left shortly after midnight.

Before all this i lost my cousin who was my best friend to leukaemia, thats my only real interaction with cancer and i cant help but compare the stats. I know its completely different. That led me to be on anti depressants and anxiety tablets for 3 years, i literally started boxing, changed my mindset for 6 months then i got ill with this. My sons mom, lost her dad to brain cancer last year and i read before it can spread from the small bowel to your brain, that literally petrifies me.

I will have a read of what you sent, my brain literally works in yes/no or black or white. I think thats why i struggle so much mentally. My dad keeps telling me to change how i think, but i cant. Its just how i am.

Craig

Hi

I know, it just makes me so confused and my brain focuses on the bad stats. They did say the chemo is like weed killer? As they cant see anything else.

When they did my chest ct scan, they didnt check my bowels tho. I dont know why, or my liver. Id be so much happier if they had of.

Honestly, i feel like the consultant just fob me off because im always the youngest there and nobody knows im having chemo until i tell them whats gone on, i just feel like its a case of o hes young fit and healthy he will be fine.

The nurses who i have the IV with are the opposite, they all know me (probably because im cheeky to them), always greet my with a smile and joke about finding me a girlfriend, they put me at ease but they dont have a full understanding of whats gone on.

I sound like a right whiner, i dont think xmas has helped, just so many emotions and worries made it all come out.

Craig

It’s great to read that you have started watercolour painting! I started painting during the pandemic to help me with work-related anxiety… I think I may dig my paints & brushes out, and get back into painting again! Thank you for the inspiration!

Craig - It’s so heartbreaking reading your post. I genuinely empathise with you, having kids myself.

I also found the transition from being a well, “fit” person who had no clue that I had cancer, to a currently ill person in daily post-op pain really challenging to get my head around.

Another massive transition for me was working full time to nothing. My mind screams from boredom and pre-occupies itself with thoughts that just don’t seem to help me….I cry at a whim sometimes…just due to sheer, unrelenting frustration and mental under-stimulation. 

No wonder you feel so emotional, especially when you think of your son. I immediately cry when I think of my kids too. 

But there is always hope. Light at the end of our cancer tunnel. We must try to believe that. There are a huge number of cancer survivors and sometimes I just sit and manifest that for the sake of my kids, I’m manifesting survival & fight mode! Don’t know whether it’s working, but one thing I’ve noticed is the positive impact that this has had on my mindset.

It’s a hit & miss though. I just embrace my bad days now & have become more self-compassionate. Taking it one day at a time, and trying to end my day with some positive thoughts (even when I’m in pain and crying) 

Ive also ditched Google - which like my tumour, have carved out as it serves me no beneficial purpose to me whatsoever. Most of the stats are AI generated and not always based on solid evidence anyways.

Sending you positive, healing vibes your way.

Hi Sonibee

Sorry to hear your in pain, it is so hard as soon as i think of my son i just get so emotional.

Ive been able to work from home, i dont think it helps that i feel quite normal most of the time. Its only when i have to IV i feel ill for a few days, The rest of the days i take my tablets, work from downstairs, before I know it the days over and we start again.

My days previous would be go to work, go to my own house, see my son, play football, make his tea, get an ice cream and in his words “play and play and play”. Everything just seems so different atm, especially weekends, i would always take him out for the day on a saturday to the Wolves games, the zoo, soft play…i can only do that the 1 saturday before my next IV if that makes sense as thats when i feel at my best.

I have a blood test this morning befofe mg next cycle starts Monday, theyve sent me a letter saying i had cancer of the jejunium….my oncologist said it was my duodenum…made me confused, unless it was on the join of the 2. Will need to ask about that, i also get to see my friend from work as she left my old work and starts her new job today as the receptionist of the cancer unit! Small world!

Craig

I can understand your confusion as you have so many unanswered questions. So the best way forward is to get them answered. Next time you see your consultant ask him the questions. Or phone his/her secretary. if they can't give you answers then ask for a phone consultation with your consultant.

Write all your questions down before phoning. I always did because I was sure to forget a couple during the consultation.

You're right about the "weed killer". I was told similar - that it's just to mop up any remaining cancer cells that might have escaped the surgery.

If you feel "fobbed off" then don't be. Ask all the questions you need to. It's your mind that needs to be put at rest. It's your care team's job to do that. And I always found them to be brilliant at doing that, whether it was the Macmillan team or the consultant's team.

As for the IV nurses - they probably know more than you realise. With the gang who looked after me there were always a couple of senior team members who were very clued up on cancer generally and could answer many questions about the treatment. If they didn't know the answer, they always phoned someone who did and came back with the info. Absolutely world class! And, of course, there was always the one who was clearly a national darts champion who could hit the vein with the canula first time!

You're not a whiner - you just need answers. Not knowing leads to anxiety. I agree that your anxiety is probably magnified at Christmas as well. Plus the Capox journey can seem endless at the start (and in the middle!), I made a chart for each cycle and stuck it to a kitchen cupboard door. It had each day of the cycle split into times and the tablets I needed to take at each time. I crossed them off after I'd taken each dose and watched the days go by until the course was finished. Marking off the days during that last week felt GREAT!

So my advice, for what it's worth, is go get answers to your questions to ease your worries. Remind yourself that you are, as far as all the evidence shows, cancer free. Take each day as it comes, do what you can when you can and, when you can't do everything, leave it. "Go with the flow" is what I was told. Very good advice.

All the best, mate, and let us know how you get on.

Hi

I had to go for a blood test today, i tried to speak to a member of the onocology team but had no joy as they had appointments. They did look over my notes and passed a message on tho, saying nothings changed from my diagnosis, i could of sworn they said it was in my duodenum not my jejelium tho. Im like 99% sure.

I spoke with the nurse who did my bloods and one of the nurses who i have treatment with, they just told me to stay off google basically. Then when my oncologist rings me in a few weeks go over everything.

Im going to try not google, trust the process and go with the 70-80% chance of survival in my head. 

Ive never spoke with anyone from Macmillan, tbh is might sound a bit weird but im not 100% sure what they do? Like do they speak with the nurses? Or just give general advice?

When my cousin had leukaemia they did things for him but he was at a very late stage.

craig

You could wait for your oncology appointment if you can harness your anxiety in the meantime, or, if you're struggling, phone the oncologist's secretary and request an early phone appointment with your oncologist and put your questions to him.

You should have been given a contact number for a Macmillan support worker when you were diagnosed with cancer. They are a mine of information and a great support and, I believe, can access your treatment and diagnosis details. So many of your questions can be answered by them or they can pass on your queries to the right person.

Hi Craig, I’ve just been scrolling like a ball of stress and saw your posts. I have stage three breast cancer. I’m currently halfway through my chemo and am worried sick about pains I have been having around my liver/ribs. I’m so scared of spread. I have three children, my son is the youngest and is 11 today. I honestly break my heart just looking at him. I cannot bear the thought of having to leave him or the girls early. I find myself on these forums, desperate for reassurance that my symptoms are something innocent. I just wanted to send a hug, I know how that fear feels. I wish you all the best. It sounds like you are doing all the right things x

Hey,

I feel your pain! Ive literally ran out of things to google. I had a good chat with the oncologist last week, it made me feel a bit better.

He basically said your survival rate is 7-8 out of 10 people are disease free after chemo which is what i kind of already knew thru google, but hearing it from a professional made me feel better.

Its my week off this week, and honestly i completely forgot all about it until i had a notification from this forum.

Session 6 starts Monday for me, i just want to be at the end of March.

Ive started stretching on a daily basis now, seems to have helped with some of my aching, maybe try that? I dont do much, i have started to develop a little bit of a tummy which is annoying because i was boxing before this and had a 6 pack  Cant bring myself to go back yet tho, maybe when its all done.

All i can say is try not to worry, i wouldnt bother googling either, honestly ive googled everything for what i had, it is what it is is what i have taught myself. Just deal with whats there infront of you at the time and right now its chemo.

Everyones different, with me stage 3 splits into 3 and even then its like they might not have had the tumor removed, they could have 20 nodes infected whilst i had 1, they could be 85 whilst im only 38. 

Always here if you want to chat tho, enjoy your sons birthday, dont feel guilty, dont even think about it, enjoy the now.

Craig