Just been diagnosed

Hi Forest 76,

I am glad that you are feeling the support and comfort from so many people who are on this journey with you. It has been a lifeline for me as well and I will always be grateful. 

On a lighter note, I am attending the hospital for my pre-operation fitness test later today.

Considering I struggle to blow up a party balloon, that should be fun! Following that I have to cycle for 15 minutes. I have never had great lung capacity but hey ho it has to be done.

My immaculate white trainers may give away the tell-tale signs that I am not an athlete. However, I am the proud gran of 8 beautiful grandchildren and look after several of them every week. That includes two 2 year olds and a 3 year old. Don't know if that counts! 

Take care. Sending love and support to you. Stay strong. X

Yes, so glad that I have reached out as some days you feel fine and others it feels like everything is closing in.  I am thankful there have been so many lovely responses that have helped.

Good luck with the fitness test! Sounds like you need to run some mud onto the trainers to make them look well used !! Like you say though I reckon your fitness levels are pretty good looking after the grandchildren! I am sure they are all very proud of you.

Thank you again for the support, I am sure the days will pass quicker than I think and then I will know my plan.

Hi Forest, 

I am at the end of my journey. 

Last week I got the best news ever. After the surgery the biopsy showed that all the treatments were successful and my tumour had shrunk by 50% and clear margins were achieved. The biopsy showed no spread to the lymphnodes. Its the best feeling ever. All the treatments were worth every second. 

Im a 50 year old woman fit and healthy. 

I was diagnosed with rectum cancer in May 2024. It wasn't a massive shock as I knew something wasn't right. I was misdiagnosed in June 2023 and was frustrated because my irritable bowel syndrome was blamed for my symptoms. But I moved on and focused on my treatment. 

4 rounds of chemotherapy and 5 weeks of radiotherapy. Its a tough journey but if you stay focused and remember it's going to be worth it you will stay strong.

I can give you hope at this difficult time through my lived experience. 

I had my operation to remove my tumour on the 18th of February. I decided to have a permanent stoma bag as my irritable bowel had been so painful over the years, it was an easy decision. You may have different choices so keep an open mind. 

Please research CAPOX and understand the reality of the Intravenous doses.on my 4th round I wasn't looking forward to it as the effects over the cycles had taken hold. My research found that reducing the dose by 20% only increases your overall survival rate by 1% my oncologist total understood my reasons for reducing the dose on my last cycle and agreed to reduce it. It made a huge difference. Hardly any side effects. I was so pleased as the Intravenous was taking its toll. 

Radiotherapy for the first few weeks was easy, but 2 weeks in It got tough. I'm not here to worry you. I want to be honest with you. I wish I knew before so I could prepare better. You will get through it with lots of support from the teams around you. 

The best advice I can give you is try not to read to much, and most of all stay focused and positive. This helps everyone around you including your wellbeing and mental health.

My cancer teams have all seen how my positivity helped me throughout my journey. My family were amazing and also were grateful for my positivity. It helped them massively. 

Staying in tune with you mind body and soul with really make a difference when you are going through your treatments. 

Rest well when your body tells you to, take for mindfulness and know that cancer treatment does work. 

Your journey will be a personal one and each person manages treatment in their own way. 

I am wishing you good health and hope my information has helped in some way. 

I'm sharing my story because I want to share my outcome with someone who has been recently diagnosed. 

I'm now heavily involved in my local cancer charity and volunteering to support others. Reach out to your local cancer charity as they can help with financial and emotional support. 

Stay strong and focused X 

Many thanks for your message it really helps with understanding what I face in the road ahead.

I feel massively lucky at the moment that under 2 weeks from diagnosis I have had my MRI and CT scans and been told today my MDT meeting is Wednesday next week. There is a good chance on Friday I will find out my treatment plan and have everything crossed.

I think last week I was upset and emotional and thinking about the things I was missing out on like holidays booked and nights out. I am now completely different mindset where I realise facing up to this and understanding my recovery is obviously priority but life when I get to the end of my journey will be cherished and not taken for granted.

I love the honesty about the chemo and other treatments. I certainly don't expect an easy ride but I think understanding what you are going into from someone who has experienced it is important so thank you.

I am so pleased you have positive news and I wish you all the best for the future. I think there will be many others who will be massively helped with your experience and support.

I'm so pleased my message has helped you. 

I hope everyone who reads it has a better understanding of a lived experience.

I was first diagnosed with stage 3 with a 3.5cm tumour at the end of my rectum. There were no clear margins so I couldn't have surgery first. You may have clear margins and your journey maybe operation first and treatment after. It's not a one size fits all. 

I remember thinking I just wanted them to remove the tumour as soon as possible.

But now i can see why the choice was made and i can honestly say that its important to trust in the choices that are made for you as they know what is best.

After treatment and surgery my biopsy results ment I was down graded to stage 1. The best outcome I could have wished for.This was due to the treatments being so successful.

Capox chemotherapy will give you pins and needles and your body will feel like it's being poisoned. It is but in a good way. 

Sitting down and incontinence will be difficult whilst your going through radiotherapy. It is tough at the end and lasts for around 2-3 weeks after radiation finishes. Your bladder has to be filled to a precise measurement every time and this I found the most frustrating, as you either have to empty of fill up depending on yhe amount you have in your bladder just before the radiation blast. But on the bright side you don't feel a thing when your in the machine. It's quick and simple. 2 min blast 10 minutes max getting the right position and then your ready to go home. 

Not sure what your personal situation is but I receive the living allowance and upper disability allowance due to the way the treatment affects your daily life. If you need help to apply ask you support care team to signpost you to the right help with the prosses. 

I couldn't have got through my journey without it as I'm a single mum and life gets put on hold for the whole time your on your journey. 

I enjoyed a holiday to Turkey in between my chemotherapy and radiotherapy for some well deserved rest and tranquility.

Best holiday insurance for cancer patients is INSURANCE WITH.

Carry on enjoying life every chance you get. 

Please don't hesitate to ask if you have any further questions if you need to. 

Good luck for your appointment. Try to take someone with you as its easy to forget what your told. 

Remember to stay positive it will make all the difference.

Hi Marc 

I know how you feel! lost angry and overwhelmed I expect but those nurses you have already spoken to are amazing

it's so hard not to let your mind wander but just take it one step at a time. I had surgery and chemo and was surprised at my new normal. Stay strong and message anytime. 

Hi, Sorry to hear your news. I was diagnosed with colon cancer just over 2 years ago. Mine was stage 2 but aggressive locally advanced, at the time they were unsure if it had gone to my liver and duodenum. In the end it was just my duodenum. I understand things can be so scary, my oncologist said that sometimes stage 2 is as bad as stage 4. But nowadays treatments are so much better. 13 months ago I was really lucky, don't know why but I informed O had a 100% response and in remission. Had the operation and now after two follow up appointment's still free of cancer. I wouldn't say everyone will be as lucky as me, by the way had a lot of side effects, but it goes to show you never know!! Try to keep positive, treatments these days are so much better than they were. Good luck and I hope things are going well

Just had my appointment with the nurse and surgeon and been booked for surgery on 24th April for a high interia intersection.  They have said they think a couple of lymph nodes near are inflamed so have said it's T3, N1, M0 at moment. 

Obviously unsure whether I need any chemo afterwards until lymph nodes removed so mid may I should know.

Feel better now I have my treatment plan. In place as everyone says. Just a bit scary now but hopefully road to recovery .

Hi Forest, 

That's great news 

You have clear margins for them to go ahead with your operation. 

Take a deep breath and take time to care for your mental health. It's just as important as physical health. 

I'm really pleased for you and your family that you now have your planned action. 

Good luck for your operation and I hope you have a speedy recovery X 

Thank you, I am so grateful everything has been dealt with so quickly.

The next 3 weeks will seem like an age as I am used to something happening every week but I am going to try and enjoy it as I know it's a tough road ahead.

I am so grateful for yours and everyone's support on here as I am not sure I would have coped in getting this far without.