Im new on the site and new to online chat or anything like this or social media. Its taken me a while to get round to asking for help as i struggle with doing so, so please bear with me.
I was diagnosed with bowel cancer in Nov 21 and under went emergency surgery in December, a right hemicolectomy, lymph nodes removed and peritoneal lining/ stomach lining scraped. This was followed with sepsis and then pneumonia. Once ide escaped hospital and started recovery from surgery i started chemo. I had 6 cycles and was clear from cancer.
In April this year my bloods werent right and after a PET scan it showed the cancer had returned in my Peritoneal Lining. I was told its incurable and after asking was informed that a high percentage of patients with the same cancer as myself have a life expectancy of up to 2 years. I started palliative chemo in June, only 4 cycles and im nearly on my 4th. Im seeing my oncologist in August to see if its worked and slowed things down. My diagnosis now is Metastatic colorectal cancer with peritoneal disease.
Im struggling this time round, dont know if its the chemo or just me.. The first time didnt seem as bad as i was recovering from surgery, then chemo then i was ok. Didnt really have time to sit and think about things as i was pretty traumatized from surgery. I cry daily, over anything and everything. Ive cried whilst writing this. I thought i was alright with the whole thing and realize now ive just been putting on a brave face. Everyone says '' oh your dealing with it really well '' when really im not. Im not even sure how i feel anymore.
I dont really know what to expect from being on here but thanks for reading.
Welcome to this group, they're a love bunch of people on here, all with different and sometimes very similar experiences.
It does take a while for news like this to sink in and there's no right or wrong way to react or behave.
I too have secondary metastatic spread to my peritoneum...I'd never even heard of it before my diagnosis in July 2022, and tbh, there's not many people that I've come across who have it.
I've had surgery for the primary cancer followed by carboplatin. Then last July had another 4 months of carboplatin followed by 18 weekly sessions of paclitaxel. I'm currently on a clinical trial in Sheffield but I had to have a particular protein in the previous cancer to be eligible. I go for results tomorrow from my scan and I'm expecting the worst news, that it's continued growing, as I've never felt so bad in all the time I've been having treatment. All I do recently is, sleep, take pain medication, go to the loo and eat very little. That's my day, then repeat.
We all have bad days, weeks etc and it's hard trying to stay positive. My attitude can change from one hour to the next sometimes. I hate feeling like this! If I was told, don't worry, we have lots of medication or options to try, then I'd be, great, bring it on! But when you feel your options have ran out, then it's extremely hard to have hope.
I wish you well throughout your treatment and you never know how things will be for you, as we are all different.
Hi Dogman and welcome. You've done well to join us seeing that you haven't done an online chat before. We are all here to help one another share our different experiences and our highs and lows. Click on our names in the left hand corner and it will give our cancer stories. Will be thinking of you in August when you see your Oncologist. I too have an appointment with mine and think I'm ok till it gets nearer the time!!
Hi Nan7, thanks for replying and im so sorry to hear your current situation. Your the first person ive talked to who has this cancer. I too live on pain relief and laxatives. i walk my dogs twice a day and sleep on and off for the rest of he day.
I dont really understand much about peritoneal disease. as their calling it, I thought it was cancer cells in the peritoneal lining and fluid. I now have a lump which is painful. and getting bigger. My cancer team are aware of it so i presume ill find out whats going on in August.
Anyway, i hope tomorrow goes well for you. Thanks for chatting and take care.
Thank you for replying to me. Ive read some sad but uplifting stories on her so far. And cried over most. I too hope your appointment goes well in August. Strange as im sure youve been to these as many times as the next person with cancer but they dont get any easier do they.
Stay safe and take care.
Hello Nick and welcome to the incurables group. We are a friendly supportive group and there is always someone to chat to, even in the middle of the night. The daily chitchat is popular and there are art, reading, baking and gardening groups/threads. If you feel up to it it is a good idea to write your profile. It helps in members replies to you and saves you repeating yourself. Just click on your username then profile and don't forget to save. My profile is there if you want to read. I was diagnosed in Jan last year and was told I was incurable in April the same year, so it was a very quick spiral for me. I'm sorry to hear that you are upset and emotional at the minute. If you feel that you need to talk to someone or need some advice, I can recommend the Macmillan helpline. They are very supportive and helpful, this is the link to contact https://www.macmillan.org.uk/about-us/contact-us
I tend to think that other people's comments, such as, you're dealing with it really well, is to help them, not us. It's easier for them if they think we are ok. Maybe that's just me though, other people's comments now go over my head. It has taken a long time for me to be able to face my own mortality. I've had counselling but time has been the biggest factor. We're all here to support you, keep posting, we all know how you feel. Best wishes for your chemo.
I am a Macmillan volunteer.
Macmillan Support Helpline
0808 808 00 00
7 days a week between 8am -8pm
Like you I've only just joined this group, it took me months to be brave enough to post anything. All responses have been lovely so I will continue to post as I hope you do too.
Hi, thank-you so much for your advice and support. I actually have a palliative care macmillan nurse who bit met a couple of months ago but didn't really need her help at ghat time. I'm going to reach out to her and try to get myself to my local maggies centre.
Once again thank you and take care.