Hello, I'm new

Coojee your post does not seem rambling to me. May I add my welcome to those you have already had. In our case it is my husband who is the person living with bc. No one can say that because their story has turned out well that yours necessarily will. But I would still like you to know that my husband had what we now realise were tumours removed from his bladder in our old local hospital many years ago. No mention of cancer was made nor any follow up!!! When the getting-up-to-pee got too much of a nuisance soon after we moved to be nearer the new grandson we had committed to help look after, he eventually got seen about 8 months later. By this time he said his whole bladder looked like inside out cauliflower. Yet 3 years on and various treatment he is down to 6 monthly check-ups in case of recurrence, a very common regime. 

I wish you a similar outcome, but whatever happens we are certainly all here for you, no question is too daft or anything.

best wishes, 

Denby

I forgot to say, if your wife does not already get PIP I suggest looking at benefitsandwork.co.uk for advice, the sub is incredibly worthwhile if applying as you can access the members guides and forum. On there trained volunteers as well as others will answer queries you may have.

Denby

Hi Coojee,I’m so sorry to hear about your mother.I understand how hard this is,my mother is also bedbound with end stage dementia.Jane 

Thank you so much Denby, every kind word helps.

We applied for PIP when my wife's fibromyalgia was really bad - before lockdown. It has improved slightly since then. Our case was turned down, plus an appeal via citizens advice. The main problem was that although I & citizens advice had carefully coached my wife for the interview, she forgot all of it during the visit. So if asked can she get up the stairs, she would say "yes" & forgot to mention that she would then have to lie in bed for the rest of the day in pain. Can she open a tin of baked beans, she says yes, but forgets the pain walking to the kitchen cupboard & lifting up her arm to open the cupboard, then having to use a spoon to open the ring pull on the tin. Then having to lie down for the day in pain. I was present for the interview, but was not allowed to say anything.

Ooh they are b-----s!!! I am so sorry to hear this. Fibro is noted for causing brain fog and they shamelessly took advantage of her. Shocking. This is SUCH a common tale, the assessors behave as though on piece rate for refusals on any excuse! Excuse including ignoring the paperwork and silencing advocates. Unfortunately CAB depend on the 'quality' of their volunteers and training. Sadly again often heard on B&W [benefits and work] this fails to show adequate knowledge and frankly aggression to counter the DWP and their contractors. If you can manage it, join benefits and work, and whenever you can spare a few minutes start to read their guides, maybe read at least some of the forum to encourage you. They have got some dedicated resources for fibromyalgia and it is one of the conditions which our daughter has and gets PIP for the effects of. A diary is a brilliant resource as evidence, they provide templates to help you, you can write it about her if that works better. The system is set up to take advantage of the basic human desire to present oneself in the best not worst possible light so the diary mentioning everything you wrote above helps overcome this. The activities need to be done as below:

....consider the concept of reliability. This is from PIP Regulations 2013 reg. 4(2)A. All. Activities need to be done 1] safely, 2] to an acceptable standard, 3] within a reasonable time (no more than twice for able bodied person), and 4] repeatedly across the day as required. [I wrote this out on a card and propped it in front of me last time I wrote daughter's form] (Dressing might be required eg 3 or 4 times, toileting could be 20 times per day or more if there is incontinence, communicating could be needed 24/7.) All 4 criteria need to be met.

There are some basics if you tackle it again. Always keep copies somehow [if you do not have a home printer/copier some people photograph every page on their phone, just as long as it is clear and you could print it off if the originals were to go missing...]. Always put her name and NI No on top of every sheet including copies of any medical evidence, diary etc, and do not be bound by their small boxes for writing in, use extra sheets as much as needed. Repeat yourself as needed for each question because they will not apply what you put for any one to any other. And always, always use recorded delivery post whether you are close to any deadline or not. 

I do hope I have encouraged you to try again, take your time to do it again supported by B&W and your chances will be very very much better. 

Kindest regards and sympathy, Denby

They are a nightmare.It is well worth trying again and if turned down appealing.My partner John was turned down for the highest rate and was about to lose his motobility car.We wrote letters of support for him to send to the appeal judge and John won his case.Best wishes Jane

Hi coojee,

Bit of a late reply... but wanted to reassure you. The turbt is really nothing. A little discomfort,  but it's not as invasive as you might fear. The recovery from it also is quick: you will likely feel pretty normal after 1week / 10 days. It is true: the important part comes after the lab result.  But there is much that can be done to cure this type of cancer. I don't mind the comfort  even the pain. I want to be as long as is possible with my family. All the rest has suddenly lost importance. If you are like me, be reassured that it is very likely we are going to stay with those we love for more years...! Yes, we need to put things into context!

Thank you Sue.

The local Mac nurse left an answer phone message on Thursday, she didn't call on Friday, so perhaps Monday. I need help to get to & from the hospital, so maybe she can advise me. Meanwhile, I'm getting some pain on my lower left side, about 3 or 4 inches to the left of my tummy button. I don't like that one bit.

Hi Coojee,

I understand your worries. Every  ache and pain  send my thoughts in meltdown.  Is that the cancer? Does that mean it has spread? But these are very normal thoughts we all have. The more likely explanation is that the pain is caused by something else and the fear makes it huge. I have the same (my pain is in the lower back ...). Did I have that before? Has it become worse? As many quite rightly say on this forum,  the fear of the unknown make it look much worse than it actually is. Remember that nowadays there are so many different treatments and this cancer is amongst the most curable. You will find that here nobody gives out false hopes. In the long run it would be counterproductive. We are all optimist and realist. I may have to have my bladder removed. The thought frightens me. But I don't want people to tell me "oh no, you'll be fine:. I want to know that if I have my bladder removed,  my quality of life is not going to be too bad. And plenty of people here have had that and can tell you that after the period of adjustment you can lead a nearly "normal" life. That's good! I'd like that, if I need that operation. The only thing that matters to me (all of us) is to be as long as possible with our family. This we can all tell you is a very likely future for most of us.

All the best. Trust our doctors, they are the best. And best wishes for all your family!