Cancer Chat online community
Hi have just found this site, don,t know where to start really. My Dad wsa diagnosed with prostate cancer about 2.1/2 years ago.Firstly he went through the hormone injections in the stomach and was then moved on to chemo.His last dose was on new years eve and then he was told it was being stopped because it wasn,t working.Before I continue sorry I should say my dad is 75 years old and has always been very active, he was a dj believe it or not although not in the modern sense he dj,d for sequence dancing events. He also enjoyed regular holidays and had a wonderful garden which was his pride and joy. Anyway back to the facts.He continued being very active all through the hormone treatment and into his chemo until last May when he tripped over coming in from the garden and broke his neck. He was sent home from hospital several times being told he had whiplash. To cut a very long story short he ended up finally in hospital awaiting an operation on his neck as he had broken the top 3 vertebrae in his neck.He had been reduced to someone who could hardly move couldn,t lift his head up and was drinking through a straw. The morning of the operation he woke up to find himself paralized.He underwent an 8 hour operation where his top 3 vertebrae were bound together with steel rope and his head re bolted to them.He underwent the operation awake as the doctors had to test his reflexes.He now has minimum head movement, had to learn to walk again and has limited arm movement.The reason his neck was so brittle was because the cancer had spread to his bones including his spine. So he still stays positive through all of this carrys on with the chemo and tries to carry on as normal.Then the chemo is stopped in January and for the first time ever he starts to get a bit down.Then he starts to have problems in the water works department.Again to cut a very long story short today he has had a nephrostomy tube fitted to his left kidney and a drainage bag.i have had limited information all through this as I live too far away to be at his appointments and since his broken neck my dad has become very confused, he was not like that before.I had a phone call tonight from his doctor what a miracle and he told me that my dads prostate cancer is advanced and that his right kidney is not functioning at all now and that they have operated today to save his left one. Once this is all sorted they can then go back to sorting out what treatment they can give him for his prostate cancer.Although I have family involved in this they are step sisters and brothers that I have never been close to and they to me and I have not had one phone call from any one of them who have been on my dads hospital visits. I feel glad today that I have at last spoken to a doctor who has been able to make things a little clearer for me. I ring my dad every day and love him very much.Just sending this has made me feel better, if anyone has any thoughts or experiences of this type of thing I would welome your comments, thanks for listeneing! xx
my dad has the same kind of cancer as well and is having hormones and other treatment,,he was diagnosed last year ,the day before i found out i was having my little boy,,hes just recently caught a severe stomach bug which is worse because his immune system is low,,my mum is like wonderwoman trying to be strong and do everything for him,,me and my other family have been told not to see him because his bug is really catching,,he just phoned me but he sounded soo very weak but tried to sound ok,,i knew he was getting upset when we finished talking and now i cant stop crying,,im sure he will be over the bug in a few days like the doctor said but im so scared,,i wish you luck,,it has also made me feel a bit better just writing this,,thanks
you,re welcome that,s what we are here for to console each other and discuss our feelings and fears etc. How old is your Dad? He,s doing the right thing staying away from people because of picking anything up, I think my Dad stayed home for about 7 days after his chemo treatments. I think the hardest thing he has had to come to terms with is having to stay home so much and not socialise and get out and about.On the other hand he stays so positive he puts me to shame as I,m a "glass half empty" person.Please keep in touch and let me know how he,s getting on and if I can answer any of your questions I will, take care and try to find some "you" time x
hes 65 and mostly doing really well,,we are all coping brilliantly90 percent of the time,it was just when i spoke to him earlier that it hit home,,my mum is amazing she organises everything and takes in what the doctors say and gives him his pills and morphine,without her wed fall apart i think,shes the one that we all thaught wouldnt cope,,im feeling a lot better tonight and mum spoke to the doctors who say shes doing everything right and they moved his next blood test forward so he can get over the bug first,this site is very helpful and its nice to be able to talk to someone thats not connected to us but knows
Hiya it must have been hard getting the news at the time you did, but just think you were blessed with a little baby boy! Your mom sounds very strong although she,s probably on auto pilot and just getting on with the day to day things of looking after your dad. It may be a good idea to have a little one to one time with her do you know if she,s come to terms with it? My dad is being looked after by his 80 year old girlfriend and she,s a rock! I don,t live close enough to be there all the time but I have stepsisters who I know help him out a lot but unfortunately we have never been close so don,t communicate.My dad,s now got shingles to add to his problems bless him not sure if he picked it up in hospital last week when he had his kidney drain put in. He,s had to adjust to so much even to getting jogging trousers so he can wear the drainage bag, my dads always been a farrah trouser man! I think for us it,s the frustration of seeing them have to adapt to a new way of life as well as cope with the illness and we feel helpless don,t we, we just want to make it all go away.I,m so glad you have got in touch again, I think I,m starting to bore the pants off my work colleagues with my woes it,s nice to talk to someone else.Good news they have brought his test forward if there,s one thing I,ve learned you have to keep on top of the hospital and the appointmentsand keep pushing them for what you need.You take care and hope to speak to you soon x
Hi to you both
I have just recently found your thoughts on this thread, and alot of this mirrors my own.
My Father http://cancerchat.cancerresearchuk.org/message/14730#14730/68 years was diagnosed with Advanced Aggressive Prostate Cancer on Xmas Eve 2009...a nice present for us all as it came from nowhere.
He started on hormone therapy and since started with a bone strengthening drug. His Cancer is widespread throughout his whole skeleton. They have just been visiting me, as I don't live in the UK. Although Dad looked 100% better than the Dad I last saw at New Year, I was still alarmed by his greyness and extreme fatigue as the day wears on. I suppose I thought he would be better, or maybe my expectations were higher? In any case, its tough to see someone you love not being themselves.
I have 2 small children, 3years and 2 years, and this also added to the problem. Its so upsetting. Its so frustrating. Its just so awful.
I know all the facts, and probably know more than the doctors at this stage, however, it still makes it no easier.
Hope that both your Dads are doing okay at the moment.
Hi thanks for your post, firstly sorry to hear your news especially as it is sudden news and you have not had time to get used to the idea as much.It must be so frustrating for you not living near your Dad I hope you keep in touch by phone. I live an hour and a half away by bus as I don,t drive and that is frustrating enough so I ring him every day.It,s wierd because I havn,t been on this site for a few days and even though I didn,t have an e mail message saying I had any new posts I felt I needed to have a look! I know what you mean about your Dad looking different and being tired.One of the things that affects my Dad the most is not that he has had all the physical problems with the broken neck or the cancers themselves or the treatments that goes with that, it,s the life changing effects, the having to stay home more,the lack of energy ,for a man who was so energetic even with his cancer 15 months ago he is struggling to adopt to this new way of placid life.He has a drain in his left kidney as his right one has lost function and in a couple of weeks he will have a stent put in.then they will see about continuing his chemo.He has his good days and his bad days.the last 3 days he has been so up he even said he had been singing to himself.Then I relax a bit and have a bit more mental energy myself.Today he is down, his back aches and he has no energy so again my mental energy is drained. Above all you have to stay positive even if you don,t feel it.I have had a few family members go or are going through this at the moment and the one thing they ALL do is stay positive it,s amazing.You think to yourself how can you not feel sorry for yourself but they so don,t it,s the will to survive and we have to be behind that 100%.As you say you know as much as the doctors, the internet can be a good source of information at this time even if it,s scary but at least we know what,s going on something the doctors don,t seem to always want to divulge.Please keep in touch and let me know how your dad,s progressing and if there is anything i can do over here let me know.Take care x
Well things have moved on so much since my last messge my dad has been in and out of hospital over the last few months, in a nutshell he has total failure of one kidney and limited function in the other.After weeks of going in and out of hospital and being messed about to the point I can,t even begin to explain or understand he had a kidney stent put in and a catheter. With his broken neck 12 months ago his mobility has decreesed to nearly zero I don,t really know wether that,s becasue of the broken neck or the bone cancer.He managed to get himself discharged 11 days ago from hospital still with limited movement and still wearing a catheter.He,s being looked after by his 81 year old girlfriend and they want no help.We managed to persuade them to have carers in twice a day early morning and late evening but all they do is wash and dress him.He has a commode in the living room and we have managed to get him a hospital bed.the last 2 weeks have been a nightmare for the family as they do not want help but the last time I was there I witnessed my dad in a nappy trying to shuffle to the commode and not making it in time.that had been happening on a daily basis.I was going insane with worry for him and his girlfriend but they refused help and got very angry with me for trying to get them more help.The last thing I wanted was something happening to my dad and him hating me for putting him back in hospital or a hospice.the maric curie nurses have offered their help and they refused that too.anyway last night the carer had him put back in hospital as my dad couldn,t move at all.He should never have been let out of hospital as he has deterioated so much .He has had an mri scan and abdominal scan today as he can,t keep any food down,I noticed on Saturday his urine was very red and now he is on a high protein drip and has a problem with low albumin.I,m going tomorrow to see him and try and find out whats, going on.His breathing is laboured, he is very pale and weak and a family member who saw him tonight thinks he now has a heart problem, all these things because of his reducing kidney function which should have been monitored had he stayed in hospital.I am supposed to be going on holiday on Saturday the first in 2 years and after having just gone through the trauma of losing my brother in law and all this could really do with a break, but the one thing I don,t know is how long has my dad got left? I know my dads illness is terminal but I need to be strong for him too and just a weeks break would do me good even though I will be worrying everyday but do I go or not?IWhat if something happened while I was away?But then if he,s going to fight it for another few months I will have a bit more energy to cope and be there to help and support him, mentally and physically I,m at meltdown point wot do I do?
Sorry I haven't been in contact of late. You are definitely having a much tougher time of it than me. At least dad is in hospital, so being well looked after. All I can suggest is that you have a 'frank' talk with his Doctors about his condition. In my experience, the more direct you phrase the question, the more direct the answer. Explain that you are going away, and is there likely to be any reason why you CAN'T GO at this time? They should have a really good idea whats going on.
In my opinion, you should do what you feel is right....bit of a cop out answer I know. However, I have seen people delay holidays etc before, and just end up getting more and more stressed. This isn't good for anyone. Can you get home at short notice if you needed to?
Do talk to the Doctors and Nurses and sound them out. You might be of more use to dad after a rest from everything, than if you carry on stressed out.
Good luck. Will be thinking of you.
With regards and best wishes
Hiya thanks for your message, I did speak to the doctor yesterday but explained that my dad doesn,t want me asking any questions and she said she cannot talk to me in that case but will ask him if he wants any family members to know more informationMy husband went today and said he was sitting in the chair and seemed quite perky, even the physio had been to see him. I have decided to go away and as it,s only in this country we could get back if needed.You are right I need a break and can then come back stronger mentally for him. Hope things are ok with you take care x
I'm sorry to hear that your Dad won't let the Doctors discuss all this with you. I am lucky, my Dad has stated that I have full access to his team, and backed that up with his written consent. It makes things alot easier, especially if I have to ask more difficult questions on their behalf.
I'm glad that you are going away. I know it won't stop you worrying, but there comes a point when you have to put yourself first, to then be able to carry on your responsibilities to others.
Hope you have a relaxing time, and come back refreshed, and ready to take up the reigns again.
Always here if you want to chat anytime. Take real good care of yourself.
With regards and best wishes as always
thankyou so much for your reply been on the phone all night to various members of the family who also back up what my husband said that he,s a lot better today,trust me to go and see him on a bad day and he was bad as apparantly he was on oxygen last night.He is now going to have another blood transfusion and they are going to put him on steroids to try and get his appetite back.He has a blockage in his bowels which they are going to try and sort out but his swelled up hands and feet are better.He has also had an electric bed put in today which will help with him being able to sit up a bit and his breathing will be better.Have had to make several phone calls to people apologising for my doom and gloom outlook last night, I kinda feel like an idiot but you can only go on what you see on that day at that time.Like everyone in these circumstances he has good and bad days wot a rollercoaster eh!I know he feels better today because my hubby said he had been moaning he couldn,t see the clock on the wall and could they move it to another wall that,s my Dad lol!So am gonna go on holiday with a positive mind, only just tonight doing the ironing etc again thank you so much for talking to me and being so unselfish as to not tell me all your problems,am leaving my computer at home,need a week away from that too! so will catch up when I get back and then maybe you can tell me your news,u take care xx