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Hi

I was diagnosed with Bladder Cancer stage 4 last year. I have 6 GEM/CIS infusions (until my body could take no more) which shrunk my tumour a little & I had a radical cysectomy (Bladder + prostate removal) January this year. Before the op, my oncologist gave me an 80% chance, after the op, it was suddenly 20% chance. I went onto a course of immunotherapy with a set of 4 infusions which were paused when I had liver problems. After a break, the infusions started again, but only 1 single treatment as I then got diarrhea which lasted a month. In June, I had a CT scan which showed me clear. But my most recent scan this month shows cancer returning in my lungs & pelvis. I was given 6-8 months. The oncologist has suggested a revisit to chemo & I now have to decide if I want to make my remaining time being ill with chemo. Last time I woudl be bed-ridden a few days after the chemo for 2 days). Right now at this moment, apart from feeling terrified, I feel relatively well. I have emailed the oncologist asking about drug trials, also if I can have the chemo at 50% strength, or maybe a different type of immunotherapy. My oncologist is not very forthcoming & not open to ideas. At home, I've been on a paleo & low GI diet to try to starve the cancer & today I've just started a 2 day fas with zero protein. My wife has been working tirelessly, cooking everything from scratch to keep the diet going. I'm taking some pathway blocking pills from CoC in London & getting some good advice & support from the private oncologist there. Right at the moment, it looks like chemo could be the only option on the table. This may mean I will be unwell for the rest of my life. Occasionally my wife gets suicidal, she is taking pills for anxiety & pills to help her sleep at night. Mty one wish is that if I die, that she carries on with her life, I am afraid that she may not.

  • Hello Coojee 

    I'm sorry to be reading your email but I'm hoping I can help you to gain strength and hope to carry on fighting.

    You don't say how old you are which I think would make a difference as to how long you are prepared to fight. 

    Try to get as much information and as you can and as you said, probably try the chemotherapy again at a reduced strength. 

    I know it's difficult not just for you but also for your wife and I encourage both of you, if you're not already, to get some counselling support from Macmillan.

    Take care and stay strong together.

    Helen 
  • Hi Coojee, i am sorry you have had to come here.

    I do not have the answers, i wish i did, i hope others can come along, that may or are  going threw your situation.

    I think perhaps your wife would benefit from talking to some one, as you do not need that extra worry, and .you want some form of peace for your wife.

    Why do you not get in touch with the local hospice, and i am not saying that for end on life, my hubby and i both had complementary therapy there, we both enjoyed it, then i lost him.

    I then had counselling from them , was a great help, i was diagnosed before him and thought i would go first, never thought i would get this far with out him, and still fighting cancer,

    Lots of support here and please use it, i had to say hi so you know some one is about.

  • Thank you. I am 64. We are staying as strong as we can.

  • Thank you Ellie. I'm not sure I understand what hospice can do to help. What is the complementary therepy?

  • A  hospice can other loads of different this, they do pain management if in pain, and are better than hospitals, they do counselling, complementary therapy,is many different things, massage, reiki, hubby and i had reiki  it was so relaxing and made you fill so much better, acupuncture, all different things. Counselling for both if needed, Worth looking into, you can phone, or gp can recommend you, my oncologist said i should go, hubby and i where both taken back, at i can only say, what a wonderful place, never been in one before, and when my hubby's time came, that is where he wanted to go,

    I would say it is worth a try and they can help in so many ways,

  • Thank you. I will try to raise the idea with my wife, but I fear she may feel its like admitting defeat.

  • its not admitting defeat, not when they can offer you so much, to improve things and make things easier, hubby and i had reiki for nearly three years, till finished my treatment, We accept things from the hospital, but they can not offer as much as hospice, 

    Please keep us updated, glad you have found us,

  • Thank you. I will try.

  • Hello Coojee, I just wanted to re-iterate the excellent advice from ellie about hospices. They can offer you a lot of support and it's far more than just end-of-life care. Do take advantage of anything on offer. Where I live they also have a Big C centre at the local hospital that also offers a lot of extras like counselling and advice. You've both a lot on your plate so  take whatever you can get to lighten the load. 

    Hugs from Rainie x