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Help and support

Lincs4help
Posted by

Just joined the group. My Mother has been diagnosed with cancer of the bladder described as aggressive. Struggling a bit to come to terms with this and finding it a problem getting information from hospital staff as in no apparent joined up information. Would appreciate advice from someone who has or is going through similar situation.

Thanks 

Thehighlander
Posted by

Hi  and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear that your mother has been diagnosed with bladder cancer.

Any cancer diagnosis brings a lot of stress and confusion but talking with people who are on the same journey can help a lot and will reduce the whirlwind wind that is rushing in your head.

As my cancer journey was rather different you may like to follow this link to our Bladder cancer Forum where you will connect with people who understand the journey your mum is on. You can ask the folks questions about tests, treatments and what to expect during the months ahead.

Follow the link above and join the group by hitting the ‘Join the Group’ tab just under the main group name. At this point select how you want to receive email notifications when someone answers your posts.

You can either go to the 'Start a Discussion' tab just under the main group name. Set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post. You can also have a look through the various threads by going into the ‘Discussions’ section.

We also have these forums where you can connect with others supporting family and friends through their cancer journey: Carers Forum  and Friends and Family Forum.

You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

Our Online Information and Support Section  is a good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support Groups in your area or a Maggie’s Centre as these folks are amazing.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

All the very best.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

rily
Posted by

Hi and a second welcome from me. Great information above, and I see you have followed Mike's link and joined the bladder group. I am from the bladder group. I was diagnosed 5 years ago with invasive and aggressive bladder cancer. I have just come home from an evening out. The only reason I mention that is to let you know there can be normal life after cancer. If you start a new discussion in the bladder group, there are many of us there who can help. The more information you can give about where your mother is at now and what treatment, if any, she has had so far the better. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Lincs4help
Posted by

Thanks for your reply.  I'm so glad I joined the group as already I'm feeling better knowing there are many people who can directly relate to what my Mum is currently facing and able to understand the emotions of it all. The consultant who carried out the cystocopy advised that it would be 2 weeks before results from the biopsy would be confirmed.  That s now 10 days ago so will probably know more by the end of the week. He advised from what he saw that it was aggressive. I did ask about life expectancy but he wouldn't commit to any timescale. Is that what you found when you were diagnosed?

rily
Posted by

Good Morning . It is understandable you are concerned about Mum and thinking of life expectancy. I think most of us have had those thoughts at some point, but bladder cancer can be treated successfully. Your Mum may have a CT or MRI scan at some point, and this is usually precautionary to check there is nothing else going on. It also gives them a better picture of what they are dealing with. When Mum sees her consultant, she should be given a stage and grading. The stage is how far it has advanced and the grade is how aggressive it is. This determines what further treatment is needed. I am sure you have done some Googling, but be aware, there is a lot of misleading and out of date information out there. For the facts, stick to recognised sites for information such as Macmillan and Action Bladder Cancer UK . Also you will find that once the initial op is out of the way, things tend to go at a slower pace and the waiting is something we are all familiar with, but still frustrating. Once a treatment plan is in place, things become slightly easier as you know something positive is happening and there is something to focus on. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?