My husband's prostate journey

Oh my, yes nothing should be hidden from you as long as you are in a fit capacity to handle it. I have all of my own, every single transcript from every consultant I have visited. I also have my medical notes from my GP. This has been helpful for me because I have Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) is a slowly developing autoimmune disorder in which the body's immune system attacks the myelin that insulates and protects your body's nerves. I also struggle with fybromyalgia/ME and psudogout!! I am an absolute walking disaster, but I really am the person to call if you need a health advocate....lol

From one walking disaster to another, thank you again for your information on medical records, I do have some, they have been redacted especially images,  though as i go to 7 hospitals under 3 different health authorities, it complicates matters especially records passes between different authorities any advice would be welcome. I did look into a medical negligence case but solicitor said as the mistreatment occurred at  different authorities in 2 UK countries they would just pass the blame between them and it could take years, which is something i don't have.

Eddie xx

This is great! Waiting time is almost over. Good luck and let us know. Cross fingers for good news!

Lots of love

Dafna

Will do

Hi Millie M,

I've been reading these threads and there's so much going on I'm not sure what to say really. Firstly, I want to say sorry that this has happened to you and your husband, by the looks of it, it's been 3 days since you had the news. It must be a terrible shock and I think you've gone into "fight mode" This is what I do so I think I recognise it. If I'm right your husband has yet to have all the tests and you are going for the MRI today? This will be good as you will know more soon. It's actually very good that your husband has been put on Hormone treatment straight away as that will start to work immediately and the cancer will start to be knocked back. These first few days are very frightening and it made me quite panicked, it's very understandable. You and your husband now have a few weeks to go before you understand whats happening and you will completely burn out, so you need to take care of yourself. As far as I can see your husbands treatment for Prostate cancer is the norm. Forget worrying about complaints etc at this stage, it's part of the "fight" reflex. Yes take notes for later and you can then look back on it and decide then if you have been treated badly and deal with it, theres no rush. For now concentrate on your husband and family. To my mind there's no point in telling your son anything about this until you know what the outcome is, what's the point in freaking him out as well.  Obviously it's up to you what you do, but myself and my partner waited until we were calm and in control (actually 2 months after the PSA)  By this time it was old news and we were able to talk about it in a calm casual way and both kids took it well. 

 I don't think I slept for a week at the beginning and I spent a lot of time crying, I look back and It was so different then, I had no knowledge and consequently I felt out of control. Everyone here understands this, they''ve all been through it. The more you understand the more in control you will be. Let me reassure you this is a very treatable cancer. From that very first moment he took that Hormone pill- it had to put the brakes on, it had no choice because this is very clever and strong medication. This gives everyone involved time to stop and take a breath, especially the team that will be dealing with your husband. They need to be able to do procedures and come together and decide whats the best way forward and the best treatment plan for him. There can't be any rush here, these are professional people that are all highly trained and they want whats best and this takes time. Now that the nurse has been able to prescribe HT, you have that time. I hope the MRI goes ok today and you are able to get some more information to help. It may be better if you start a new post that's just for you as it can be hard to keep track of who's having what, especially for someone like me who's terrible at reading things in any order. Let us know how you get on and how you are coping. 

Best wishes Lx

Hi L,

Your post was beautiful and so reassuring and at the same time really reflect the situation of the first few days.  I think Millibob should put it as a background read for everyone who is starting this journey.

Thank you for that

Lots of love

Dafna

Awww Dafna, that’s such a lovely thing to say x 

Lx 

Hi Dafna

jacobanddafna said:

I think Millibob should put it as a background read for everyone who is starting this journey.

It's a great idea, however as you are aware everyone who joins the Community are at a different stage of their "journey" and we all have different reactions to the diagnosis I feel that a personal response to everyone is the way to go. (I may be wrong but this is my personal opinion)

I am not too sure if a "pinned post" would be allowed on the Community but I will bring it up at my next  meeting with the full time staff.

At the start of a cancer journey we can all suffer from an "information overload" and that's also something we need to look at. if we do have someone new to the Community I don't always respond myself if other members have posted before me.

I am working away from the Community on a project with Macmillan to ensure everyone with a cancer diagnosis is given the right information from day one - but we have a long way to go with it yet.

Many thanks for your suggestion - I will follow it up.

Best wishes  - Brian.

Brian, although I liked Dafna’s idea, I do agree with you and on reflection, receiving personal feedback is much better.  David

Brian, thank you for your comment, I actually know a lot about prostate cancer from my work and my dad actually had prostate cancer, but that was 20years ago.My initial thread here was driven by my disbelief that my husband was being investigated and was receiving no real support from Warwick NHS.  I am not in shock, I am shocked by my husbands treatment, no one should be prescribed a drug unless they are clear about why it is necessary.....my husband is not and he will not talk about what has happened, he is in denial because he believes his bone scan and MRI will come up clear and it will be a BPH scenario!!!! . Up until the day he was prescribed Bicaluatamide(Friday 19th) he had had 4 blood tests, (2 when he was hospitalised for urine retention - 6/4 and one on the morning of 8th April, when he was sent home. He had 1 on 15th April,and one yesterday, He had an  ultrasound in hospital and a DRE.He was fitted with a catheter on 8th April and the appointment on the 19th was supposed to be for a trial catheter removal. He has spoken to no one at the hospital in the meantime, other than one very unhelpful doctor, who merely said his kidney function had improved but offered nothing further. Those are the only tests he had undergone until 18th for bone scan and MRI on 22nd. From those tests he was given no other information than he may have prostate cancer or BPH. My annoyance is that, when he got to Urology and was told his appointment had been cancelled by his consultant, and  that she had tried to phone him and sent emails (which still cannot be traced, I have called the consultants secretary only this morning), it should not have been left to a lead nurse to write out a prescription for a drug for an illness that had not discussed with the patient. He has no diagnosis at all and cancer was not discussedl!!!!!!. That is definitely not best practice and no patient should take drugs when they are not fully aware of why they have been prescribed. Especially when they can access the insert (the leaflet inside the packaging), that can be detrimental to their mental health. NICE make that very clear, a person must be told why they are prescribed medication and the implications of the medication prior to their administration. The leaflet inside Bicalutamide states exactly why it is given, yet my husband has had no diagnosis and no discussion about why it is necessary. and the nurse was not authorised to pass on that information ,and neither should she have been. That rests squarely on the shoulders of the person prescribing the drug! Please rest assured, I am not in fight mode, my job revolves advocacy,so I am no stranger to this kind of behaviour, but when it is happening to my husband and I know what is happening is totally against protocol I will do my utmost to say what he will not because he cannot!!!! Furthermmore, he isn't panicking and neither am I, in fact he is in a state of total denial (and I am well versed in that too,I see all stages of grief in the people I support). Also, my husband has not read the insert from his drug box and he won't, he  has no idea what the implications of taking those drugs are beyond the side effects he may experience......that in itself is out and out wrong......he should have been told why he is taking them, what they are for and the implications of the medication. Instead the NHS is willing to let him work it out for himself!!!!! Currently, he is totally wrapped up in the idea that once the test results are in then his diagnosis will be made.....until that point he in his mind is cancer free!!!! That is because  no one has led  him to believe otherwise, and Bicalutamide is not given to people that are cancer free!!! So you see,he is not crying, he is in disbelief that he is being investigated for prostate cancer......and that is my BIG issue!!!!!  Many thanks for your suggestions, I really welcome your advice