Hello, this is all new to me.

Dear STC1, I am so sorry for what you have had to go through. And I'm not surprised you are still in shock and denial. I hesitate to try to say much more as everything must still be very raw for you. 

I was diagnosed with muscle-invasive cancer and had my bladder removed (in my case after the chemo). And I know how shattering the whole experience is, without having the  metastasis. You are clearly still in shock as this is all very recent. However, I think if I were you I would do two things.

First I would ring the Macmillan phone line and talk it all through with with someone who will have experience in talking to people in your situation. And they can give you some insight into what you may be able to do.

Secondly I would have a long talk to your oncologist. If they do things in your hospital like they do in mine you will be seeing them regularly in between chemo treatments. If not you probably have a CNS - nurse specialist who can also explain things and also  get you in to see the oncologist. I'm sure up to now you haven't been able to process what they may have told you. But now you may be able to get to grips with it. It would help to take someone with you or to record your conversation so you can play it back.

I cannot tell you what having palliative care is like but I have seen posts on here from those who are in that situation. I am sure someone will respond.

I am also so sorry about your mother. It is another thing to add to your worries and I remember how I felt when mine died 50 years ago. It takes time to get over such a shock.

Given all that has just happened to you I am not surprised you are having trouble motivating yourself. But I hope over time and after learning what your options are you will be able to take some control and be able to make the best of your situation. 

All the best and good luck,

Latestart

• Hello Latestart thanks for this. I have spoken to McMillan and also beebn into a local affiliated branch. I also have spoken to my specialist nurse and am due to see consultant on 3rd Feb. I missed 2nd part of first cycle as I had been in A & E  with suspected sepsis. Have a chest infection and antibiotics for 7 days. I have always tried to do as NHS say, no smoking or drinking ran 3 times a week and healthy diet. I am 63 and normal stats are good for my age. This makes it more difficult to understand. I am looking for a light at the end of the tunnel and a message from anywhere to tell me what to do. but it is difficult and friends do not know what to say. Never married and no children though I have a sister recently back in touch after a long while. Regards 

Hello stc1

Iam sorry to hear your situation. As latestart has said there are people on this forum who will be able to guide and offer advice. Please never think you are on your own. Iam realitavly new to the forum myself and have learnt so much and made many friends.

Mark 

Hello Mar09 thanks for this. I know I am not the only one affected by this. but you do feel alone sometimes and it would help to speak to anyone in a similar situation. Any advice from experience from anywhere much appreciated. I need to make sense of things, accept reality and settle into a liveable normal routine.

Stc1 iam sure over the next few hours or tomorrow someone on the forum will be able to offer you advice as I said there's a wealth of knowledge to be found here you won't be on your own 

Mark

I'm glad you've talked to people and have an early appointment. But I honestly don't think one can make sense of cancer. It just happens to us. When cells go  into overdrive it may be because of smoking, environmental factors or just random. No one can pinpoint the actual time it happens. The day I was diagnosed (at 69) I was outwardly the healthiest I'd been in years. I lost count of those who said, 'but you can't be ill you look so good'. And I did, bursting with energy, regular gym going, daily energetic walks, full of plans. I went for the result of the Turbt expecting them to say. Well that's all gone. Instead they said you'll be having chemo and we'll remove your bladder.

I realised that wishing it away wouldn't work so put my mind to getting as well as I could and supporting those around me to bear it. I was fortunate to get to where I am now 2.5 years on. Some have faith to help them do that, I don't. I take the medicine, hope it works, concentrate on what comes next, paste on a smile and take it a day at a time, doing things I enjoy as often as I can. After all, I could be run over by a bus too.

I hope you can find a way through this that works for you. 

All the best

Hello STC1,

Well done for already taking some action to grapple with the enormous initial shock of being given such news.

My path so far with bladder cancer differs in detail from yours but some aspects are perhaps similar. It's quite a long response but I hope it indicates how an incurable cancer which hammers one's mental processes can eventually be taken on board.  In early 2018 I apparently came within 2-4 weeks of dying, such was the rate and extent of blood loss. More details are in my profile if you click the green chair symbol. Co-morbidities (a previously undetected heart problem) made even a TURBT risky. Chemo, BCG and radical cystectomy were out of the question. I had had medium dose radiotherapy in late 2017 which was temporarily successful in that the bleeding stopped for about 3 months. When it restarted, an emergency TURBT was performed as a last resort. By this point I had virtually given up. I actually told the medical staff not to bother with the TURBT. I wanted to just slip away. Transfusions were not keeping up with my leakage. This proved to be very painful and after 3 days the nurses and a consultant managed to persuade me to go into theatre for the TURBT. It stopped the excessive bleeding. 3.5 weeks later I emerged from hospital, badly shaken by the experience but somewhat surprised as well. A few months later in 2018 another TURBT proved to be the only way to stop the excessive bleeding which had recurred. This was again successful but the bleeding was too great during the procedure for an adequate sample to be taken for path lab analysis and grading. About 5 weeks later I was in hospital again, this time with sepsis and 41degC making me have violent fits of shivering. Again, the NHS worked their wonders and I tentatively began an uncertain future. I was more or less convinced that I'd be lucky to last another 6 months. A year seemed an impossible dream. I was signed off by Urology in early 2019 and told that my care would be palliative. This tended to confirm my assessment of my prognosis. However, I thought back then that palliative care was only in a hospice. Pretty final sounding! Gradually, as I became more familiar with the general terminology and asked more  questions, it was explained that palliative in my case meant treatment of symptoms and pain to maintain a decent quality of life for as long as possible. It would not cure me of cancer. CT scans and flexible cystoscopy tests in early 2024 have shown that the cancer in my bladder is slowly growing back. I have had a Foley Urethral catheter since mid 2018 to prevent my bladder from expanding and bleeding. I still see rosé urine a few times per month and my catheter blocks frequently.

My philosophy for the last 7 years since diagnosis has been to live from day to day rather than set any major goals. I've got used to it. I still drive and live independently. In 2007 I lost my wife in a road traffic accident. The cancer came along just when I was beginning to cope with that horrible shock. 

As you have seen from previous posts, we will all do our best to support you despite having battled or still battling with this damned disease in its numerous twists and turns.

Very best wishes, Ray

Thank you Ray for your story. I am truly inspired by your fortitude and perseverance in never giving up even when things look. bad. I hope that I can have some of that attitude. I have had some really bad days not helped by lack of sleep even though my treatment has only started. I hope and pray that you carry on doing well.  Best wishes Stephen 

Hello again Latestart, your story a d others does give me hope. It is easy at the start to not think straight or logically. I am usually an optimistic person but all this and the not knowing can really get to you. Thanks to everyone else who will offer me support.

Best wishes Stephen 

Dear STC1,Stephen,I’m so so sorry to hear about your situation and your mum’s death.I hope you will find support with us in this caring group.Best wishes Jane x