Hi Paul- it all moves so fast from that point on, I know! When I was diagnosed the endoscopist told me to just "do the next thing we're telling you to do" and just focus on that, rather than think of the whole situation and get overwhelmed. He also said to only google trusted sites (this being one) and avoid everything else. But really (I am well into my treatment now) that advice about just doing the next thing was the absolute best. I'm still doing it, not saying I am having the time of my life by any means, but it does help! Loads of luck to you.
I hope you don’t mind me asking but what treatment are you having and do you have many side effects? I’m meeting the oncologist on Thursday to hopefully get a chemotherapy treatment plan.
I'm meeting my oncologist on Thursday to hopefully get my chemotherapy plan. I’m just taking each day as it comes at the moment, some are easier than others but my kids keep me going.
I hope you get a plan soon as I found the waiting the worst part.
Thank you Lucy. Focusing on the next thing, rather than trying to get to grips with the whole lot is excellent advice. Thank you for sharing it. CT scan tomorrow, then colorectal consultant Friday next week. Little steps :-)
It is serious if you think nothing appears to be happening. You might draw strength from the fact that the CR team is on your case. However, as your treatment progresses there will be silent periods, but don't worry. Some parts of the treatment programme require a measured delay for previous parts to take effect, but you will not have been forgotten.
Thank you Dulac. I am just impatient and I want to know everything now. I appreciate that this is going to be the case, because things have to happen at certain times and in a certain order. They have been very quick so far, I wasn't expecting to have a CT within a week of diagnosis but I guess they have to work quickly, just in case there are other sites.
Original intention to have chemotherapy followed by surgery and followed up by more chemo and then 6-8 weeks after scan and meeting with oncologist to hopefully hear they’ve got the cancer in remission. Oncologist then ( correctly) changed the plan as he felt that delaying the surgery might be counter productive ( might have been too late to operate is my memory of what was said). My saint of a surgeon did an excellent job and got the tennis ball growth out ( along with 67% of bowel and lymph nodes) and managed to confirm that the growth while fed by surrounding veins had not sseemingly spread to the liver.
After the surgery ( and short recovery period) I then went on chemotherapy at home for 8 sessions of 3 weeks duration - 2 weeks on chemo with a week’s break for each session. In the weeks break I have 4 days with nothing happening and then 3 days where day 1 bloods taken at local surgery; day 2 discussion with oncology nurse and if ok levels day 3 pick up next batch of chemo and start twice a day doses on day 4.
And happy to say now on session 8 so chemo will finish early January 2024 and all things being equal I will hopefully get the all clear ( or not ) after the envisaged scan and oncologist meeting.
So I agree with Lucy 100% and would reiterate that it is best not to google anything but this or the NHS websites. Additionally I would recommend trusting your medical professionals and just work through each individual stage of your treatment. Yes the chemo has all the side effects that can be expected but from my experience the first session was almost a walk in the park with the worst side effect being that I could fall asleep without warning and had lethargy. Inevitably with the chemo accumulating with each sessions different side effects were experienced and were manageable taking the positive thinking that they were signs that the chemo was getting rid of the remnant cells left after the op ( in the blood veins)
Hopw this helps and always willing to help if you have any questions. Mind you the MacMillan nurses are excellent and will go the extra mile to get you answers to any concerns you might have.
Thank you for your response. Google is OK if you don't believe everything you read. When I find something which interests me or I think could be helpful, I go off and research it more. The internet is full of useful information but the key is to be able to pick it out from all of the rubbish
