New Member with Incurable bladder cancer

Hi

I have just replied to you in the immunotherapy thread but thought I’d say hi here too. I started with womb cancer but it’s now in my liver, lungs, lymph nodes and spine. Mostly the tumours are quite small. I’ve been in continuous treatment since November 2016 and that’s kept on to of them. The only symptomatic tumour is one that’s breached the wall of the inferior vena cava - that’s the dirty great blood vessel carrying blood from the heart to the lower part of the body - and extended into the renal blood supply. My body has laid down clots in the blood vessels causing lymphoedema and a risk of an embolism. The kidney has stopped working and is like a blocked pipe, all swollen and bulging. I can feel it through the wall of my belly just below my ribs, it feels like a tennis ball. 

Although  I don’t have the same cancer as you, I think what we all have in common here is living with a life limiting condition. I’m 56 and I must say my life plan didn’t include this. I get a lot of support here from people who know what it’s like and don’t say things like “you need to be positive”, “anyone could get run over by a bus” and “keep fighting” . I hope you’ll find it helpful too. 

xx

Hi

Welcome to the group although I would love to have met you elsewhere, but you're here and we'll make you feel welcome, just like we've known each other for years.

You'll also find a group specific to your cancer where you'll find people with knowledge of your cancer. It sounds like you have already checked in somewhere else from what Daloni has said in her post. 

You will be happy to know that there are a few here who were given a prognosis of just months and they are still here, well past their sell by date by years in some cases. As for me, I was diagnosed in March 2015 with a blood cancer, MDS, and my consultant Haematologist could only say that some people go down and different rates. Then a few months later I was diagnosed with a spinal problem which resulted in me having to see life from a wheelchair so that was an added complication in my life that I didn't need! I didn't think I would see my 60th birthday± I have had to knuckle down and get on with a life with many twists and turns, a lot of pain and uncertainty but here I am, a seasoned campaigner, just like many others in the group, some of whom, like Daloni, deserve many medals for what they are experiencing. There are too many to name. 

Daloni touched on what a few people may say to you by way of trying to put you at ease but in my opinion show an ignorance of the situation. What makes my blood boil is when someone says that they may be run over by a bus tomorrow, it's like their showing little compassion and they're trivialising a very serious illness. True friends are those who stick by you for many years and be there for you when you're feeling sick, lonely and miserable. They're usually ones that are going through something similar to you and can understand your highs and lows, your happiness and despair.

I hope you stick around KL, whether you contribute much or not doesn't matter but you'll get into the way of things and maybe give a crumb of comfort sometimes. Just as important is to let us know when your treatment is going to be and how you're feeling so you can be given sympathy or empathy because we all need to listen to helpful words occasionally.

Take care KL

Tvman

Thankyou Daloni

Your reply is very helpful to me and its nice to know that there are others in the same boat as me.

My kidneys the last few days have been hurting like made. I have separate bags connected to both of my kidneys.

I think the side effects of the chemo is causing the pain but I just keep on taking the painkillers which does ease it,

I am currently working my way through my bucket list to do as I find this good to help keep me motivated as I have gone in a very short space of time from being really active to being homebound and this is just not me.

I have arranged a weekend with my two sisters in weymouth in April, A big party for 130 guests in May and in June have booked 7 caravans for my whole family who have children and now my focus is to make sure I am well enough to reach these goals.

We all can try not to let cancer overtake our lives even though we know eventually it will win one day but not just yet.

Karen xx

Hi Tvman

I find your reply very comforting, as like you my aim is to go past my sell by date and deal with today as it comes and worry about tomorrow once it gets here. I think positive attitude goes a long way and yes we will all have a good days as well as bad days.

In the beginning of my illness i was feeling really let down by the whole nhs system being that they kept treating me for a water infection with antibiotics, but as time has passed i have learnt that i just need to get on with life and that there are many others in the same boat as me.

The hardest part of this is not being able to sleep at night and very few hours during the day so feel like drained quite a lot of the time.

I am really glad you achieved your milestone birthday of reaching 60 and it gives me hope i will pass another birthday too.

Take care

Karen

Hi Karen, 

I am sorry to hear you’re in pain. I feel for you. I love your bucket list though. No bungee jumping or mountain climbing but rather time with family and friends. I really hope you achieve all of them. 

xxx