Anxiety about diagnosis

Hi Susb

Like you it is my first time posting on this forum, although I have been reading the posts for a long time and have been encouraged by others journeys and positive attitudes.  You are not alone and we all will have moments of despair, (I call it THE FEAR) worry about those that might be left ,what the future holds and many ridiculous things usually around 3 am!!!  I think all of these stresses are almost normal in our circumstances and if you need a cry have a blooming good cry. 

I hope someone on the bladder cancer journey can reply and advise in more detail but I think we all have the same basic anxieties.

I do think if you if you are anaemic you may feel much better once you have the blood transfusion.  Also you never know the outcome from that the immunotherapy will bring. I have Ovarian Cancer that has spread to liver, lungs, omentum etc and they attempted debulking surgery but had to abort due to scaring from a previous surgery (to remove my kidney and spleen see my bio I have also blood cancer) The only option was palliative chemo to shrink the tumours followed by maintenance  immunotherapy to prolong survival and improve quality of life.  After the third chemo nothing had shrunk and there was debate on completing the next three so potentially nothing else, at that point it was hard to stay positive but one day at a time. So glad I did, carried on at the end of six rounds the buggers had shrunk, I have put on nearly a stone in weight and I am now on maintenance tablets. Naraparib.  More importantly I am out walking and enjoying my new life. Each day at a time my tumours will grow again eventually and at that stage there will be a new plan what ever that is I intend to keep fighting. (Possibly more chemo?)

As a side I had some complications in June  rushed to hospital (bowel blockage) and was referred to the palliative nurse, she has been brilliant I got my pain sorted , emergency injections to hold at home for the community nurses, a written plan to take to the hospital for future blockages, a terminal financial allowance (not means tested) community nurses as needed and if wanted support for my husband. If offered don't be frightened by the palliative label it has been a totally positive experience. As I am now doing so well we have mutually agreed to suspend her care until needed again.

I hope you are feeling a little better, tomorrow is a new day, blood transfusion Monday should give you a lift and I'll bet you get your stamina back. We all need time to adjust to the new stages of our journey, you are never alone we are all with you, there are folk on here who although often had a rough time have well passed their sell by date so encouraging..........

I will be thinking of you tonight , do let us know how you get on on Monday. 

Your fellow fighter!

Xena

Hello and a warm welcome to you both, Susb & Xena, although no one particularly wants to be in this Group, in my opinion, it is the most friendly and supportive group on the Forum. Most people, including myself, read the posts for a while before joining but once you do, you will never be alone again.

Here we have all been through the feelings you are experiencing and manage to find a way to get through it with the help here. Xena, I am one of the ones here who is well past my sell by date and believe me there are quite a few of us! I was put on a Trial for a Target Drug and although there are side effects of the drug, they are not life threa! Susb I see you have not written a Profile page yet and Xena you have. Usually when someone posts the first thing we do is click on their Username and read their profile to find out what kind of journey they have been on, so we have a better idea of how to respond. I have been here for so long.       ( after an initial prognosis of 5-7 months) mine is like a book and that is without me updating it for quite a while. All I can say is there are more treatments available now than there has ever been and new drugs being developed all the time. Never despair just try to enjoy every day and don’t give up hope! I am sure others will be along, at a more reasonable hour, to welcome you and you will both be amazed at all the different roller coaster journeys people have been on.

Please keep in touch and let us know how you are doing!