About Paul_D

Paul_D

Hi everyone and it has been a while since I posted anything but all is well but so much has changed, just to put you in the picture with my cancer; diagnosed with stg1 Bladder cancer in 2016 with Tumor, CIS removed I went on the usual immunotherapy which lasted 16 months before the BCG started to attack my body resulting in a replacement knee. I have had the regular 3 monthly cystoscopies till this year then 6 monthly which have been clear since 2018. Will be heading to the Mater in Brisbane later this year for another Cystoscopy with a Prostrate resection, bugger getting old but I am still walking the planet. Health wise I have let myself go a bit with the Covad19 lockdown but I am determined to get back into shape using the same willpower I have used all along, cancer is a thing that can take over our lives and we can settle down and let the thing envelope us, take the cancer on and as my GP said when I first was diagnosed "Get yourself in the condition to fight it" and it works mind and body. All the best everybody and stay safe. Paul_D

Paul_D

Hi everyone and most of us are coping with the post cancer problems which in itself is not easy having been through the most traumatic period in our lives to date it pays to be positive in all things, I am cancer free at the moment having just been given the all clear at the Mater in Brisbane many thanks Dr Clubbs excellent team. With the virus taking over the health care system it may be longer than six moths before my next check up which is a worry but the need to get on top of this current problem is more important, being house bound can have it's benefits as a good spring clean is always a good thing and I have painted the place from back to front allready. I don't get treatment anymore due to the BCG (Bladder cancer treatment) attacking me after 18 months of it which resulted in all sorts of major issues so if you are on BCG treatment good luck and persist as long as you can, well that's all my news for this episode so stay safe all of you. Paul D

Paul_D

Hi every one and yes things have improved over the last 6 months, I had some bio's done and the BCG had left a desease in my bladder and the Mater team have dealt with that. I am now unable to receive the BCG treatment and have been told if and when the cancer returns it will be dealt with (it will), unforunately if it proves to be muscle invasive then the bladder comes out. Getting used to that thought as it's better than not being able to walk which I can now after a long, long period of pain, I am fully aware that my situation isn't any where near other cancer sufferers but even though we are one and all on our cancer journeys our individual suffering makes us understand how other people in the cancer team are effected. My saviour throughout the last 6 months has been Tapentadol but you can really be effected by this so be careful. Love and best wishes to all on your journey's. Paul

Paul_D

Thanks Kate and I will be at the Mater in Brisbane next week for them to have a look inside and take some biopsi's to see where this is taking me, I have finished the oral steroids now and will hopefully discuss the next stage with the team under Dr Clubb. Will indeed keep you up to date and again thanks for your concern, walking still an issue as my knees are still very painfull. Paul

Paul_D

Hi every body and I feel I should share the problem I am going through, I was diagnosed with Bladder Cancer early 2016 and have been through the usual removal of tumor plus a lot of cancer spots but it wasn't muscle invasive. Having the BCG treatment which is imunatherapy a virus that stimulates the imune system into attacking the virus then anything else including the cancer that lies below which in the first 12 months worked very well and no big side effects. Last year all things changed after the usual 6 monthly BCG treatment with a lot of pain in my knees which have arthritis but that subsided after a while then when the next 6 monthly BCG treatmant was finished on the same day I was in the A&E dept at the local hospital in great pain and unable to walk and this carried on to this day 8 weeks later. I have had a week in hospital recieving IV high grade steroids and am still having oral steroids so I can walk, my oncologist has changed my medication from BCG and my main hospital are ready to do some biopsy's on my bladder as the BCG has attacked that as well. BCG isn't something everyone can tolerate so be warned. Paul D

Paul_D

Thanks for the support Budgie and my G.P, Oncologist and Rheumatologist all agreed it was B.C.G related that flares localised arthritis and my history bears that out, take care and best of luck. Regards Paul

Paul_D

I have had Bladder Cancer for 2 years now and really not had to much of a bother from the cancer itself having a good size tumour and C.I.S spots removed over 3 ops then 6 monthly Maintenance B.C.G treatment ongoing, I had a reaction to the B.C.G this time last year in arthritus in my knees which managable was painfull. I was in Canada at the time so used some of my wifes arthritus tablets which eased the pain but didn't do the job. This year after maintenance B.C.G things took a turn for the worse when my knees reacted badly so much walking was an issue and continued to get worse so after 3 weeks I couldn't walk and ended up at the local Emergency department via ambulance. My Gp who is a very good doctor run out of ideas phoned all relevant people and here I am on a course of heavy intravenas steroids for 4 days which is being carried out by the QLD Hervey Bay Hospitals "Home Hospital Service." This has relieved the pain and got me walking again, my question to this is this a consequence of the Cancer or the treatment and has anyone else been through this hell. Pain I have never suffered in my life before and never wish to again but will I think. Hope some one has answers Paul

Paul_D

Many thanks Kate and yes not to bad today and wishing every one in our community a hopeful and painfree year. Love and Best Wishes to all, Paul D

Paul_D

Hi all and yes at this time of year when everyone should be joyous and bountifull it is hard to slot into those catergaries when cancer has been the only thing in "our" minds in the lead up to this time of year, I am 2 years into Bladder cancer and have in the last couple of days been given the all clear for another 6 months so what do I have to complain about? I like the rest of our Cancer Community have chemo to keep me alive and the fact it keeps me alive suppreses the pain and suffering it gives me, well I am maybe not bouncing off the ceiling with joy but I am still able to post this and hope I can for some considerable time. Our lives are closely monitored and thankfully the care we are given by the proffessionals is the best and the many volunteers that revolved around us as cancer patients make life a life to be lived so Merry Christmas evreybody and hope you have courage and hope for the future. Love and Best Wishes to all. Paul D

Paul_D

Hi all and in reply to your question ojces12 I attend the Mater Urology department in Brisbane under Dr Clubb and his team, they are all great and asking questions is something they expect I even used to write the questions down on my hand as I was going into the operating theatre and the doctor would write the answer down on the other hand so I would read it when I came to. They are no different in keeping you waiting for appointments etc to any other hospital but thats just the system, first class team. I also attend the Hervey Bay Cancer Care Clinic for my treatment on a three monthly basis and again they are first class with all the team being there including dietician, physcologist, cancer care coordinator and treatment room which covers all (I think) cancer treatments and as I live 5 mins away even better. I moved up from Sydney 10 years ago and Hervey Bay is a good place to live and warm, they even have a lively cancer care group where you can meet people like myself who can swap stories etc. When attending the Mater in Brisbane I stay at the Queensland Cancer Council lodge near the hospital and they have a curtosy bus that takes you there and picks you up, all free even the accommodation. Sound like an advert for Queensland but it's all good. Love & best wishes to all Paul D

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