My Husband (Richard)

Good morning Dolly, well firstly sorry to hear your bad news which must be a massive shock for you both. I was diagnosed with advanced prostrate cancer which had spread to the bones mainly in the hips but also the spine neck ribs and shoulder. At first I was given 3-6 months to live, well here I am almost 3 years later still moaning an groaning but going strong. My wife an I have spent days upon days crying an getting angry an every other emotion you can think of. I have had chemo which was ok I had minor side effects but it was bearable. Take the news that the consultant will give you next week on the chin an work a plan out to get through it, you didn,t say how old your husband is, I,m 56 now an my consultant has said they cannot cure my cancer but they can control it, dont know how long for but I,ll be damned if I,ll give up without a good fight. My advice to you both is listen to your Dr an do not give up, there are lots of treatments available and also do not stop talking to each other, your both suffering this so keep talking an keep smiling as hard as that may seem. In honesty this illness has probably brought me an my wife closer together. I,m always available if you need a chat about this situation. Good luck Eddie.

Good afternoon Eddie

My real name is Andrea, but they told me to use a different name. Thank you for replying. My husband has just turned 61 and the cancer is in his prostate, hips, spine (three places), spleen (they think). He is to have a full body specialist bone scan next week to see if its anywhere else, but the consultant says that's academic as he already believes the Gleeson Score (or aggression score as I know it to be is likely to be high).

As you quite rightly say the emotions change from day to day from disbelief to absolute horror and anger, especially since my husband asked for the PSA test over a year ago do to urinary issues and was told by the doctor that it wasn't necessary. 

Thank you for your kind words, they really have given us hope. We do keep talking and a lot of the time we are very positive and you will probably understand what I mean when I say we hang on any positive words the consultant gives us, for example, he said that because Richard is still young and otherwise "well", that he may be eligible for trials which have proved successful in prolonging life in recent years.

Good luck to you too and please do keep in touch as your words have helped us this morning.

Hi Andrea&Richard, great to hear from you, well Eddie is my real name, glad my message has helped you, these GP are a nightmare, we struggled with ours for 9 months before we were diagnosed one GP was convinced I was an alcoholic because of the blood tests the others were we feel just playing a guessing game dispite my PSA being 197. I had the chemo an radiotherapy as I said which went ok, luckily my consultant got me on a trial because I was very young for prostrate cancer I am taking a drug called Aberreterone best check the spelling. Its 2 500mg tablets a day and they are working my PSA IS NOW 1.5 And we are happy been taking these for 18 months now so try an stay positive because there is help there, just have to knock on doors to find it. I had to give up work because of the illness so now I potter around the garden doing little bits I get very tired by lunchtime and do tend to fall asleep in the afternoon. One word of advice for you Andrea is to let Richard do little jobs because my wife god bless her at first wrapped me in cotton wool which I understand but it was driving me mad, so let him do things just keep an eye on him, as for being positive with the Dr,s appointments we go each month to the hospital and we class each visit as having a game of Kerplunk. Each visit is like pulling out a straw an one day we know that we will get bad news an all the marbles will come crashing down but until then we keep smiling. You will get dark dark days with lots of tears an anger but believe me it gets better I know we can never be cured but we just take it 1 day at a time, I,m lucky I have a 14 year old son to keep me occupied but everyone deals with this illness differently, my other advice to you both is always be honest with each other dont lie about the illness or any of its symptoms because your only cheating yourself if you do. May I ask what pain relief they have put your husband on? I am taking Fentanyl Patches for pain relief which I change every 3 days plus I take oral morphine as an when required and a injection called prostrap every three months. I try very hard not to use the morphine if I can or I limit it to night times only to help me sleep during the evening. Well I hope this has helped you an remember if you have a question just ask me because it will not embarras me I ,m not ashamed of having cancer, stay strong both of you. And remember keep smiling even on the inside.

Hello Eddie, by the time the PSA was finally done the result was 852 (yes, thats right 852!). The pain relief at the moment is zoromorph tablets and oral morphine as needed, however Richard was in pain for most of the morning today and finally the morphine has started to work.

I expect when we see the consultant he will be able to advise us re further pain killers. Richard started the hormone treatment on Friday.

We are thrilled you are still going strong after such a prognosis of 3-6 months, and that is really positive. Our eldest daughter lives in New Zealand and so we probably need an idea as to how long but I dont want to hear really if I am honest. Richard at first said he didnt want to know but now he says he does.

Its nerve racking isnt it when you visit the hospital as you say, you dont know when all the marbles are going to come at once, and a couple of weeks ago we spent two days having xrays and scans and the news just kept getting worse.

It would be great to be able to control the cancer for as many years as possible and thanks for the advice re "cotton wool wrapping" I will of course take your advice on this.

Thanks again and have a nice afternoon.

Blimey 852 thats probably the highest I ,ve ever heard of, but thats in the past now we look to the future and trust me it will get lower as soon as they sort out the right treatment. Sorry to hear about Richards discomfort this morning it is quite depressing when the pains active, as I said I take the morphine at nights if I need it to try an get a decent sleep coz I find with a good sleep I can get through the day ok. You will have to find Richard a hobby he can get into. I used to hate gardening but my kids brought me a greenhouse an now I potter around planting seeds listening to my radio an it really does help me forget. Its wierd because for a split second every day when I wake up I think everything is ok then suddenly it hits you again, but I try so hard to remain positive an when I struggle I go to my greenhouse. Hospitals are scary but we have a really nice consultant an she promised us from the start she will always tell us the truth which puts our minds at rest.I next see her on Wednesday this week, and as for knowing Richards diagnosis my advice would be to know, because if it really is bad at least then the two of you can plan what to do an say to the family etc. When we found out I went off on my own and arranged and paid for my funeral not being morbid but it was one less thing Carol had to worry about. But look around your local area as there is lots of groups out there to help if you need it, and one day you will need it. Telling the kids was so hard, we have two grown up kids an a youngster who was only 11 when I was diagnosed, at first we didnt tell him the truth and now I,m so glad we didn,t because it would of freaked him out, we told him the whole truth after a year and he,s fine with it now been to the hospital a few times with me as well. Right I,m off for my tea before I bore you both, I hope these messages have helped you an anything I can do to help you then just ask ok. 

Hi Andrea

I was diagnosed  July 2017 my PSA was 634 and my gleason count was 4 + 5= 9 Metastatic stage 4.

The best advice I had was to listen to your Dr and not everyone else (what i mean my friend had this and so, also the bad press ie Daily Mail) your husband is himself and no one else can advise him other than you Dr.

I found it was very good talking to other people who also had Prostate cancer the area I live in we have a Maggies group and that is excellent.

The treatment i received was 6 cycles of Docetaxel Chemotherapy which completed in Jan 2018, life long Hormone injections also Radiotherapy to my Shoulder and Spine.for the last 6 months i have been taking Xtandi Enzaualudamide but it seems these have no affect on me so i have stopped taking those.

So the only thing I can say to you both is to remain positive and enjoy every Day and Month and Year.