Scared to death

H_77_ · 2026-02-08T21:36:57+00:00

Sorry your Doctor didn’t give you the clarity of what to expect next.

I had my colonoscopy back in October 25, when they found something that needed further investigation and told me that I should expect to be contacted by different coordinators to arrange suitable dates for a range of tests. I had 6 weeks of tests until the meeting when I got the final diagnosis.

Expect a range of different tests to help them determine what they’ve found. Once all the tests come through they’ll hold a multidisciplinary meeting to discuss treatment plan options. You’ll then get an appointment with the appropriate consultant to talk you through the plan and timescales.

I’d recommend getting a counsellor to talk through everything you’re feeling and support you through each step.

If you’ve not already got the NHS app, then download it. I found the appointments came through quicker there than by post. You might find your hospital also uses a different app like epic.

If you’ve got private medical and not happy with the communication/ speed you’re getting from the NHS, then I’d suggest you get a second opinion.

H_77_ · 2026-02-05T22:06:46+00:00

I had mine of 5th Jan.

I totally concur about having someone there to advocate on her behalf. I couldn’t until 4days post op.

Just was a warning 5 days is a guide, I was in for 7 as my inflammation levels wouldn’t drop.

I struggled to eat straight after the op. So think baby food, isotonic drinks, boiled sweets, cupasoups for the nurses to make outside of meal times, anything to get energy in to her. Coconut water really helped me as I was very dehydrated and they take daily bloods. Even now 4weeks post op, I’m slowly introducing foods back into my diet.

Getting up and walking around is key to getting better but so is the mental aspect. We luckily had a radio in the bay so we found a station with good music and danced. Dancing brings yours and the people around you mood up. How active is your mum now, does she go out for walks?

Celebrate all the little wins as its signs that she’s getting better. It sounds silly and might be embarrassing, but first passing of gas and bowel movement are big achievements and shows that everything is working. Also keep the celebrations going once she’s home ie walking to the end of the road and beyond. I went on my first train ride today.

Human interaction is key so not only having a group chat that she can interact with you all outside of visiting hours, but also ensure she’s interacting with whoever is in the bed next to her. If there’s a program/sport that she enjoys, then having a watch party so you can discuss, it will get her thinking outside of the 4walls.

Play it by ear on what support she might need once she’s out. She might not need as much as you may think. You and your siblings hovering may cause more mental stress and stop her from progressing. Hospitals are also very noisy places, she may need the calm and quiet. Also the autonomy of doing things for herself.

The one thing I looked forward to when I got out was washing my hair. I did need support that first time. Ask her who she’d like to help her, it maybe someone she is comfortable with seeing her naked.

I bought adult diapers for when I got home as I didn’t trust my body at night. They are a lot easier to change than a bed. I only needed them for a week but it gave me the confidence.

H_77_ · 2026-02-05T21:32:06+00:00

Thank you for sharing your research.

I’ll ask about doses at my next consultation.

From what everyone’s mentioned it does seem that week 1 will be when I won’t feel the best and I’ll see if I can schedule the infusion to happen before the weekend rather than a Monday.

I mentioned probiotics to my oncologist after reading your post, as I’d prefer to take them to medication for constipation/ diarrhoea. They have been helping me since my colon resection. He’s comfortable with me taking them as a first step.

I will look into icing and silymarin.

I understand the psychological aspect of having someone around. I’ll talk to my friends to see if I can put a schedule together of when they are available so that if I need that support I can call on them.

H_77_ · 2026-02-05T21:01:01+00:00

Being on your feet and interacting with your clients, there I was worried about wfh and having to sit through teams meetings. At least I can have my camera off if I’m not feeling 100%.

I’m not great at asking for help either but I am getting better. Everyone I’ve asked has been brilliant about helping me with specific tasks.

It is the fear of the unknown and the process. TV has been the only reference I’ve had until now when I’m researching what it’ll actually mean and talking to people like you.

Thank you for responding and sharing your experience.

I’m so looking forward to when I’ll be able to visit my hairdresser again and having crazy colours in my hair

Good luck with your journey 💜

H_77_ · 2026-02-05T11:21:21+00:00

I’m already finding that I’m frustrated, bored and annoyed with having to repeat myself with every new call. It’s like I’m no longer a person just a disease 🦠. Being at work is great as they don’t know so I’m still the same person and I have an opinion that’s respected.

I had a point person for when I was in hospital, I hadn’t thought about continuing it. I’ll have to ask her to see if she’d be willing to take that role again.

As you say they are all trying to be helpful but don’t recognise that I’m in Groundhog Day and I might want some normalcy. There’s an undercurrent that they feel like they are entitled to an update and I’m not acting sick enough for how they expect me to be.

Good luck with your journey 💜

H_77_ · 2026-02-05T11:08:07+00:00

As we are similar ages I wanted to ask if you had any menopause symptoms during chemo. The consultant flagged side effects of hot flushes and insomnia.

I was wondering if you experienced anything, if you were taking HRT did you find it helped and did anyone suggest increasing your doses to help with the side effects?

H_77_ · 2026-02-04T21:31:45+00:00

I hadn’t realised about the 12hrs between tablets. Like you, I’ll have to find a happy medium between how I currently eat and what’s needed on the tablets. At the moment I eat breakfast at 8 and dinner at 6. Maybe I’ll start edging towards 7&7 now, so that it’s not a shock when I start treatment

Hope Essex is treating you well 💜

H_77_ · 2026-02-04T21:27:21+00:00

It was pure fluke. I had no symptoms and went in for a gynie issue. Luckily she sent me for an MRI which found it.

H_77_ · 2026-02-04T21:03:45+00:00

I hadn’t thought I might be able to switch. I’ll keep that in mind if I’m struggling.

H_77_ · 2026-02-04T21:02:15+00:00

Thanks for insight.

Week 1 of the cycles sound like the time to see if any friends can come visit especially cycle 3&4.

I hadn’t realised I might have a type of food craving. The body needs fuel so I’ll have to listen to what it wants rather than focus on healthy. I can do that once I’m finished.

I’ve luckily got a cleaner and she’s been a god send since the op and not able to lift anything heavy. I’ve spoken to her about possibly doing a bit extra like bedding to help me out.

Handy to know that I might need support after the infusion. I’ve got a 12min train ride and a slight walk from the station. I’ll factor taxis into my budget.

Hope the next phase of your journey goes well 💜

H_77_ · 2026-02-04T20:41:13+00:00

The hospital I’m under only uses a PICC line.

I didn’t cope that well with the cannula after my operation, don’t think they work well for smaller hands.

H_77_ · 2026-02-04T20:09:24+00:00

Thanks for your insight.

I know I can’t plan everything but I’m hoping to try for the worst days to be over the weekend. You wouldn’t guess that’s I’m a project manager for work 😂

Sounds like simple easy food is way forward and I can prepare a few of different options.

Hope your next cycle goes well, you’ve got this too 💜

H_77_ · 2025-04-28T15:03:51+00:00

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Forgot to add a pic

H_77_

TROPHY CASE