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!

• Hi Reading the reply above from.anndanv I am also passed my sell by date . I completed my  rounds of chemo and have continued  on a target therapy which at present is keeping cancer stable .  I get scanned every 3 months to monitor . I take everyday as a blessing .
• Take care 

Hi Susan, and welcome, I know nobody wants to be here, and it's not somewhere we ever imagined we'd ever be, but well done in coming over, and I hope you find the support,  advice and friendship the forum offers, helps you like it helps many of us on here. Like every one with our prognosis, we have to accept there are always going to be down days, I also have serious heart issues, which have on occasions could, and probably should have taken me a few times, so long before my diagnosis, I learned to appreciate my time and to make the most of any time I have, I too often cry, I am a man, and it doesn't bother me where I start crying, if I need to then I do it, l also have counselling at my hospice. I would like to echo Xena's remarks about the palliative team, and the hospice, they are NOT for end of life only, I have had their support for over ayear and they have been wonderful, never needed them much. but when I have, they have been amazing, my go to, when stress/anxiety starts, is exercise, anything from a walk or swim to my exercise group. and talking to friends on the same journey helps also,  we are all friends here, if you want to scream, shout, rant or need a shoulder to cry on, we are here for you. my best wishes for Monday, I will have everything crossed for you, take care.

Eddie xx 

Hi Xena, and welcome from another former stalker, who was also reading posts before I joined the forum, I love and share your attitude to life with cancer, as someone on the forum said, I have cancer, cancer doesn't have me, hope you enjoy your new life and your walks for a long time yet, and I agree palliative care nurses are fab. Best wishes.

Eddie xx 

Thank you all for your warm welcome to this special group and new friendships!!

Xena

Thank you everybody your replies have certainly made me feel better just need to get Monday over with and hopefully feel better. I suppose I was really having a bad time I sometimes struggle with my stoma and that combined with everything else just got to me . I am in a better place now ready to face what ever happens on Monday 

Hi Xena and Susan, you are both very welcome, we all understand the ups and downs of our prognosis, and how important support from people who really understand what living with our cancer really means, and how to get on with living the life we now have,  despite all the obstacles that are put in our way.

Eddie xx 

Hi Susb

I can totally related to how you feel. I was told a few days ago that the only option left for me is 2nd line chemotherapy and that is not very effective for my type of tumour. It is so hard to believe and came to term with. Especially when I suddenly woke up in the middle of the night. 
I try to let myself feel and absorb the news. Then try to think about things I am grateful about and what I can do today to feel good.

Have you been to a Maggies centre? I went for the first time and it was really nice and they offered counselling and just a relaxing environment. 
send big you hugs 

I also have a stoma - colostomy since 2021. It called Stanley and can be a naughty boy!