Having a wobble

Hi Dallady and welcome to the forum.

Although I’m not a member of this group, I noticed that you hadn’t received a reply to your post yet. Sometimes with the rarer cancers you can find that the forum isn’t so busy and it takes longer to receive a reply. 

Can you share with us if any treatment is scheduled for you soon after being on watch and wait? It might help others reply if they’ve been through something similar.

You can also ask questions of our nurses who can provide general advice and information here

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I had a different cancer, but I understand how it’s easy to have a wobble when faced with something new-it’s not being selfish in my opinion…it’s a fear of the unknown and how you’ll be affected, especially if you are currently feeling well.

Do you have a CNS (cancer nurse specialist) you could call to chat through things? They should be able to explain the treatment and go through any potential side effects which might help set your mind at rest.

I hope you might receive some more answers here from others who have been through treatment after watch and wait.

Sarah xx

Hi Dallady, what is the diagnosis you have been given and what is the treatment planned? 

Hi there

The surgery option is scary but not sure why you feel that worrying about it is selfish.   I think we all would rather not have to have the surgery but there are a lot of people who are alive for many years after diagnosis because if the surgery.

Have you joined the Pseudomyxoma Survivor UK charity support group.    There are a lot of members feeling as you do ....it's good to share.

Hi, thank you. The reason I asked whether I was being selfish is that I have strong beliefs about quality of life over quantity, but family members don’t necessarily agree. At the moment I’m well and active with all bodily functions working as they should, but there’s no certainty that will be the case after the massive proposed surgery. I’m so stressed and torn.

Hi there

That's quite a dilemma.  CRS / HIPEC is the gold standard treatment for our cancer.  I am a Christie Hospital patient and had surgery in July 2022.  Whilst I have lost all of the usual organs which are removed, I am still here and although I can do less than I did previously, I still manage to get out for coffee, lunch, dinner withfriends

Thanks for the reply. I’m under Basingstoke. My lifestyle is quite active - I have 3 dogs and walk them several miles every day, and although I know the CRS/HIPEC takes a long recovery I need to know that before too long I’ll be back walking again.

Hi there

From what I have read on the charity's FB group, being fit before surgery helps recovery. There are quite a few people who have posted that they are back to walking, running g,working g out in the gym.  If you haven't joined the group, I would encourage you to do so as there are lots of members who can give you real-life experiences about recovery