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20/04/2014 at 09:11

Lovely to hear your post Mike and glad it all went well. This forum is full of great people who will give support whenever you need it. We're the best kind of family - we don't turn up unannounced and eat all your food, we won't ask for a loan, and we won't phone you just when you've just settled in a comfy chair after a busy day 

20/04/2014 at 10:45

Too true, Fairy lol 

Hope you're feeling ok today Mike 

21/04/2014 at 10:53

Hi Mike, hope youre not feeling down today, remember you have lots of friends here holding your hand and wishing you well. Take care.

24/04/2014 at 01:06

To be honest.  I have lost the plot.  Last Saturday.  I attende theQE at Woolwich for a CT Scan. Fully expecting to have to drink some concoction containing iodine.  No. Goining into the inner sanctum. I had to lie flat.  Most painful. Mike has kypho scholiosis of the spine.  To lie on my back, I can't breath, and teh pain to the diaphrame is terrible.  So the iodine wa sto be injected.  Mike is not all that good with needles, however I manage.  Left arm..no go.  Right arm...no go.  Right hand.  Mr Allen, your veins are so deep.  Cobblers thinks I.  At times I amuse myself by, pressing downon a vein in my hand, slowly passing a finger along it. It goes flat,the releasing the presure, it all comes back. Eventually a needle is inserted.  Is that hurting Mr A.  Yes says I.  Then sorry, I can't continue..  I can't print my silent sayings.  No No that's alright.  For gods sake get on withit I want to go home.  I came away looking lie a an ad for Dr Whites.  Ladies will know what I mean.  I had all these tiny filter tips suck all over me.  The back of my right hand was black.  Amanda, me and a Microbiologist are disgusted that, I have been subjected to all this invasion of body and soul.  OK the urologist ,after the cystoscope. Poking a fibreoptic camera up ones spout.. OK he says. Yes you kave bladder cancer. I'l book you in for surgery. Don't worry. No cuts etc.  This type of cancer is not a killer.  As I say. we are most annoyed that up until now, nowone has sat down and talked this over.  Hey medics. I am alive.  I feel pain. Yes I am afraid. Hey guys.  I am not some rubber dummy that you can stick pins into.  To be honest. I have an assessment appointment in a weeks time, followed by a meet with my GP, regarding blood tests.  Sory.   It seems that the left hand doesn't know what the right hand is doing.  OK, Mike might be losing it now. One minute, I learn that blader cancer isn't a killer.  It, along with prostate cancer, is slow growing.  I am 75 come December. Yes I love life etc, but I am so lonely without my mate.  I have known many who have suffered cancer, gone through agonising treatment and the passed away after perhaps a couple of years.  Despite medical advancements etc. All this additional pain and sufferring for just a year or two. This thought that bladder cancer is not a killer. Folks pleas. Can you in some way or other enter my thoughts etc.  ruly friends. I value your thoughts.  I have studied in parts, homeopathy. It real does work for me.  Honestly.  Mike really is at a cross roads.  HELP!.

24/04/2014 at 07:14

Morning Mike. Did you manage any sleep last night?

I really don't know much about bladder cancer I'm afraid but I know we've a few ex doctor types on here who might be able to explain things to you if they're about today. When you see your GP can you ask them to explain whst is going on? Or for facts and "what normally happens" what about calling the Macmillian Nurses? They're open 09:00 - 20:00 and their number is 0800 808 0000. I know they were a cracking bunch when my grandmother was dying and might be able to give you advice in what to ask / demand from the doctors so that when you next go you can put your foot down and get some proper time for them to explain it all to you.

I'm really sorry to hear your trip was so traumatic. When I was having blood tests earlier this month the nurse (who turned me into a proper pin cushion) told me that before I next have blood tests to drink as much as I possibly can (alas water not whiskey) as it helps making taking blood easier.

Bal
24/04/2014 at 08:17

Hi mike have only just seen your post. I am so sorry to hear your news. I wish I could magic it away for you. I am a radiographer by training but have worked for medical companies for the last 20 years. I have spent every working day for the last 40 years in some hospital or other, and have seen a terrible decline in the attitude of staff. But there are still people who care in the hospitals. I know it's hard sometimes but my advice is to demand that someone sits down and talks to you. Hospitals are so worried about there image nowadays (more it seems to me than the standard of care) I know that MDT (multidisciplinary  meetings) are the norm these days so even if it seems like the right hand doesn't know what the left is doing, it's not necessarily true. My advice to you is be determined and firm. Hospitals are so afraid of complaints nowadays that the will listen if you make a fuss. I will be thinking of you x

Bal
24/04/2014 at 08:20

p.s. I really cannot recommend the Macmillan nurses enough, give them a ring, they can really help both practically and emotionally. They were fantastic when my dad was ill. x

24/04/2014 at 10:40

Mike, don't forget the Samaritans. 24 hours a day and ready to listen to you. 

You don't have to be suicidal to call them. Some people think you do but although the question will be asked a Samaritan will be pleased to hear that a caller is not suicidal. 

 

24/04/2014 at 11:02

Hi Mike, sounds like you where having a very down night last night and sorry to read how distressing Saturday and indeed this whole situation is for you.  We are all still here listening and holding your hand virtually.  I can't offer any advice on your diagnosis or treatment as I am not qualified.......I only have eyes to read and 'listen' to you I'm afraid xx

24/04/2014 at 12:11

Hi Mike,

I've been reading through your posts and I also read your posts on the other forum although I never registered on it.

I kind of understand the dilemma you are in and wanted to say so, although I cannot offer any advice.

My mother died two years ago after being diagnosed with cancer of the oesophagus and liver and as is often the case with cancer sufferers, she didn't seem to get ill until she started the treatment.  She had bad reactions after only two sessions of different chemo and the second left her hospitalised until the end, a couple of weeks later.

There was a horrible moment when I took her for her second chemo session and the nurse mentioned palliative care and my mother questioned it, and I thought how is it at this stage before the question was asked! I know I'd asked her about it because it seemed like an important elephant in the room, but often people don't like to talk about it out of embarrassment.

The point I want to make is the same as Clarington and Bal have already said: it's important to know the facts so an informed decision can be made. I never attended any of my mothers appointments when she got test results so I only ever got passed-on information and I'm not sure how much she took in, in hindsight.

Anyway, the whole thing left me thinking that if the same thing happened to me and I asked the right questions, I might not accept any treatment. But you have to judge your case on its own merits.

I hope I haven't made anyone uncomfortable with my remarks, I admit I'm more of a facts person than a bedside person and on many occasions this has not been helpful, but sometimes it's good to talk truths, and please know it is kindly meant.

Vic 

 

24/04/2014 at 19:35

Mike ((hugs))   I've been away and just had a brief read of your recent post.  I hope it will help if I tell you that several years ago I knew a chap who had what sounds like the same type of bladder cancer that you have - he had the same 'up the spout' inspections that you've had - the treatment was done the same way with lasers - he would have a day off work for the treatment and go back to work the next day - he was a builder doing strenuous work.  He would have a regular 'inspection' once every 12 months and if anything needed zapping it would be zapped with a laser there and then.  He fathered the third of his three children after starting receiving this treatment.  He died some 25 years later in his 70s of a severe stroke.  

I remember him telling me that the most painful thing of any of the treatment was the injections - the rest he regarded as a day off work   I would add that he was an active allotmenteer!!!

I hope that gives you a degree of reassurance - remember we're all 'rooting' for you - rooting, get it???  That's a joke that is ((hugs))

24/04/2014 at 19:45

There must be a consultant at the hospital where you went. It is normal for this person to explain any operations to you. There is usually a special nurse whose job it is to talk to patients before their treatment. Don't be backward about coming forward. Go to your GP and ask to be referred to the consultant or hospital nurse for a chat.

All the very best.

24/04/2014 at 20:23

The NHS is in a mess at the moment.  Everyone does a bit of the job, but not all of it.  Everyone thinks someone else will have told you what you need to know.  Nobody can keep up.  When you are in distress, sometimes sticking needles into veins and arteries doesn't go so well.  Nobody has ever taken blood from me or stuck needles in me and had a problem - except for the very sad time when I was in hospital having to give birth to a 20 week baby who had died in the womb.  The doctors were trying to insert a cannula.  It got more and more painful, and I felt increasingly stressed and like, as you say, a pin cushion.  The doctor got more stressed.  I was in agony and inner turmoil, because it was the most horrid time.  The doctors throughout the whole process changed shifts, the least experienced get the night shift, but it is in the night, when things aren't going too well, that the patients are most vulnerable.  I am sorry that your experience was frightening and distressing and badly organised.  I can understand how you felt. 

Unless they have told you otherwise, your bladder cancer may not be life threatening, and (ironically) it may be for that reason, that they aren't taking greater care of your emotional needs.  But it would be better if they had made that clear.  When my dad had it, no MacMillan nurse was sourced, and because we changed authorities halfway through the treatment, that was partly our fault.  But I found out what I could, and asked the relevant questions, so we did know what was going on and why.  I think your operation date sounds good - they are not wasting time - it will not be fast growing, so May 12th is a good date.  Like I said to you before, I don't think you should worry about it being agonising and coming to nothing, because it wasn't like that for my dad (who had a very low pain/discomfort threshold) but got through it, despite the fact that in the middle of his treatment - between the operation and the radiotherapy, my poor mum died of a stroke - and he too had had a very close bond with her - they were married for 57 years.  There really is a very good chance of a full recovery with bladder cancer. 

My mum had a mitral valve replaced in her fifties, after a small hole made by rheumatic fever as a child, and I remember that she just submitted absolutely to the treatment she was given.  She trusted the doctors completely, and kind of zoned out, and it helped her get through.  But it is not an easy thing to do.  She had good reason to trust the guy who operated on her, because he operated on Princess Margaret a couple of years later, so we thought it amazing that she got, on the NHS, the surgeon chosen to operate on a member of the royal family.  But anyway, she got better, and had another 26 years of life as a result of that operation.  I try to trust on medical things where I can, just because I think it helps you get through, but at the same time, stay alert to what they are doing and why. 

My name is Valerie.  Only my parents called me 'Val' though, and a few select others.  Mainly I am Valerie nowadays, because I miss them so much xx

24/04/2014 at 23:46

Thanks friends.

Oh Dove. Hug me a bit tighter please  It's now four years since I hads such a hug.

 

Busy Bee2.  Hi Val. Thanks so much for your post.  Sweetheart, Mike shares your loss.  My Val also died from Mital valve diseas. plus other probs. It is strange.  Val was allowed home for about a week before her op. Sorry but to describe our feelings.  Mike is lost for words. We both shared the same faith, and knew that this life wasn't the end of things. Duringthose few last days together.  Val wa sso weak. The downstairs neighbour, was toatally unaware of the seriousness of Vl'a codition. Door slamming etc.  Amanda had a word with her and her bed mate, both rael were, are as thick as two planks. That last evening together at home.  We chatted. With our christian belief. We believe that this world system is soon to end. That a brand new world will be ushered in.  Both Val and I, realised. This op was a one way ticket. Kerry and Amanda were at the hospital when their mum was wheeled downto theatre. From what was said.  Val said. Kerry, Mandy. Well this is it.  Take care of Dad please.   Goodbye. Love you lots. The whole day passed.  The girls were getting worried. Numorous calls to the hospital. Sory we can't fin Valerie please call again.  Thankfully my GOD was with me. I didn't panic.  Then  the phone rang.  The girls were out shopping.   Dad put your coat on quick.  We have got to get to the hospital.Urgent.  The way Amanda drove though rush hour traffic.  Had I still have been a trafic cop.  I would have given her an advanced driver's pass.  Despite all the urgency etc. We were kept waiting so long..  The surgeonturned up ful of regerets and praises respecting Val.  Turns out. She had such a tiny heart. The mitral vales were in a way, so corroded etc.  New entry holes had to be made in the heart wall.  In the end.  my lifelong mate, never woke up.  Now today. I am faced with Amandas problems. Hey this kid has had nowt but bad luck all her life. Disabled due to medical negligence.  Mum of two of the finest kids ever.  Now she is faced with being homeless.  Her house is owned by a local church.  The church now want to sell the house to rais money fo a building a social center. Folks.  Mike has no one to turn .  No shoulder to cry on.  Thank mateys for being there.  Truly.  Much love to all.  Mike xx

Bal
25/04/2014 at 00:05

Oh Mike my heart goes out to you. I to have taken comfort from my faith, but sometimes you just want to scream Why! all I can say is keep hold of your faith, there is a reason for every thing, we just can't see the bigger picture from where we stand. There are so many thoughts and prayers for you and yours rushing towards you right now.x

25/04/2014 at 12:05

Mike I am so sorry to hear that you have all the worry of your daughter's situation to deal with at the same time as undergoing treatment yourself.  It seems strange that a church would make someone homeless to achieve their own ends without helping to locate new accommodation for your daughter.  Perhaps Amanda's good luck was to have two of the finest kids ever.  My mum had a best friend who seemed to have a string of bad luck in her life, but the one thing she did have was three loving children, and no matter how hard she was hit, she counted her blessings on those three children. 

 

25/04/2014 at 12:18

Oh Mike someone upstairs really is doing their best to test you aren't they. But just remember - they wouldn't be testing you if they didn't think you strong enough to over come it.

I hope your daughter finds somewhere new to live soon, perhaps there are greater plans ahead for her and her wonderful children. Do they live near you currently?

KEF
25/04/2014 at 12:40

Mike, when my Dad came home from seeing the consultant he announced to us that he had bladder cancer. Mum was on him like a ton of bricks  Apparantly what he had been told was that he had cancerous cysts that could be removed. Dad only heard the cancer bit. Like Dove's story, Dad had laser treatment and annual check ups, resulting in one more de-coke a few years later. When he died it wasn't anything to do with his bladder

On one occasion he came out of the bathroom and announced he needed to go back to the consultant as he had a big problem, after urinating the water in the bowl had frothed up. It wasn't funny for Dad but we all laughed, having no sense of smell he didn't know Mum had put bleach in the toilet. Hope that memory of mine brought a smile to your face.

I send you hugs & positive vibes and hope all goes well for you and your daughter.

25/04/2014 at 16:37

at the bleach story KEF!

Sorry to hear you had a tough time at the hospital, Mike.  They're supposed to make you better both physically and emotionally but it sounds like they're not doing a brilliant job at the moment.  We're all thinking of you and sending our support down the wires!

25/04/2014 at 16:53

Mike - I really don't know what to say. I find it hard to believe your daughter could just be left high and dry like that, surely they must give her plenty of time to relocate? I hope you can get put in touch with some organisation that can give her support - local housing authority, Social Services and Citizen's Advice for a start. 

I admire your strong beliefs Mike, even though I'm a total atheist.  It must give you such a lot of comfort. Let us all be your shoulder for crying on - whenever you need it. x

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