Newly Diagnosed. Upset, angry and terrified

Good evening John, I’m glad you’ve got a consultation tomorrow and I hope you are taking your wife as you both need each other to digest what the consultant says . I took a list of questions with me when we had ours .My OH just sat attentively nodding his head. It’s a lot to take in understandably but once you know the plan you will put it all into perspective. Hope it goes well and keep in touch . 
best wishes 

Liz & OH XX

Good evening John.

Can I suggest that you ask to record the meeting and I presume your wife will be with you as two pairs of ears are definitely better than one. It is difficult to take all the information in so recording the meeting will make sure that you both hear correctly. Explain your emotions, hopefully the consultant will be sympathetic and may prescribe something to help you. Ask for copies of the scans and biopsy so that you can study it in your own time. Ask what your options are. Make sure you get contact details of who you can talk to if you have any questions. Ask for timescales for the different options. Don't be rushed - if you don't understand anything ask them to go over it again. Ask if there are any aggressive features from the biopsy or is it the more common adenocarcinoma.

I am keeping everything crossed for you and please come back if you need anything explaining.

Hi Steve. Yes please send me the stuff that gave you hope. I’ll take anything I can get. Thank you for your positive spin on where I hope I’ll be. 

Morning from a rainy Brighton

I admire and salute all the men here. You choose to live. Some of you lost your manhood, your physical strength. Some of you come with baggage of other illnesses and health problems. Some of you lost loves one in the process, one of you  lost his partner and soul mate. Yet you chose to live and to fight and to support each other. And I salute you and admire you for that. 

You are fighting, you are going to the gym , your keep working through chemo, you go on holidays, you work in the garden, you walk your dogs, you rowing, you hiking and you keep living. You even planning a wedding and welcoming new children to this word. You go on holidays, you go out for a drink with friends and a meal and you keep living and supporting each other and your partners. You chose to live.

I salute you and I salute my on husband.

Lot of love

Dafna

All. Thank you for all your wonderful messages. I have my biopsy results meeting this morning as most of you know and I’m really scared. I already know the results as I had them from a private consultant that delivered these to me in a cold way. I have made a list of questions as advised. I’ve read AWs timeline of treatment and as are many others are inspirational. Reading many experiences of others, I wasn’t expecting the treatment to last as long as some of you but now I have an idea. May I ask how some of you coped during the early stages of treatment for example was you able to take walks, see family? Was you able to enjoy any aspects of life during treatment? I work locally as a financial adviser in my own office. Do you think I’ll be able to carry on working in some way? Is it all doom and gloom?

Hi J and good luck for today.

I had Radiotherapy which was relatively easy so I just carried on as normal.

Treatment side effects slowed me down a bit but I carried on working and side effects only lasted for about 4 weeks.

Surgery may be a bit more difficult because a major op but from what I have read others say recovery seems fairly straightforward.

All the best 

Steve 

All the best for today John JPMJIG 

From personal experience life has carried on as normal during my husband's different treatments - ongoing HT, two different types of radiotherapy and chemotherapy. OK, we are retired but we still have an active and rewarding life. Some daily adjustment is necessary whilst having to go to hospital for the appointments and the chemotherapy did take a little longer to recover from. Apart from that we made a conscious decision to get the most out of life. What it did do is make us put our house in order and prioritise what is important to us and just go for it. 

Taking walks and seeing family and friends during treatment is essential, just be more careful if they have bugs. To keep yourself safe during active treatment like radiotherapy then think COVID precautions but generally just be sensible. We still went out for meals or a cup of coffee.

You haven't met our community champion yet Brian Millibob as he is currently on 3 weeks holiday and I hope he won't mind me saying that he has his own accountancy office which he is continuing to run getting on for 3 years after diagnosis with a T3 prostate cancer (read his bio for inspiration).

What I will say is that my husband suffers from depression as well as PTSD for almost 30 years, neither of which he can help having, it is just a fact which we have had to learn to deal with. There is help available if you find that your anxiety persists but don't be hard on yourself for the feelings that you are experiencing.

I think you will find that once you open up to others you will be amazed at how many of the people you come in to contact with either are living with prostate cancer or know someone who is. Definitely not doom and gloom.

Hi John (JPMJIG ), I think the others have given you a great account of the likely outcome, so I won’t repeat.  Good luck for today.  Please let us know how you get on and we will walk you through your next stages.  Definitely not doom and gloom, but let’s get today out of the way.  Best wishes, David

Hi John

i hope all goes well today.

my husband chose the HT and RT pathway. The 20 sessions of RT over 4 weeks were difficult as the drive to and from the hospital was very tiring for both of us ( I was chauffeur!). It was a 50 mile round trip across country lanes and then the city centre. This could also include massive queues for the hospital car park but we found a local supermarket and used their car park in the end!

My husband found the affects of the HT we’re cumulative. Yes, he had the brain fog and slowed down but he was 75 when diagnosed - a lot older than you! 

That said, we did not stop living LIFE. Once we had got over the shock of the diagnosis and very poor care in urology , we were able to pull ourselves together emotionally and decided we could either let the PC control and ruin our lives or we could get on and enjoy our lives DESPITE the PC. That was our choice and in our control within a world that seemed to be spinning out of control at the time for us.

What we found was that the diagnosis actually, in some weird way, made us look at life differently. We realised that we were not going to live for ever and that we need to appreciate every day and everything we have together. We also drew much closer as we tackled the problem together. We don’t know whether his treatment has been successful - there are no guarantees! But we are making some lovely memories.

you ask about work. I am still doing some work. At the beginning I reacted very much as you seem to be doing. I was angry, grieving, frightened etc. I also couldn’t stop crying! When I broke down in tears just after a work meeting, the manager took me to one side, went through my diary and pulled all but one event from my diary over the whole month of RT. That one event she left in was, as she said, ‘only if I felt up to it and for something for me to think about’!

The other good thing that came out of it was how our adult children rallied around us! I think the tables turned somewhat in that they, too, realised we would not be going on for ever. One daughter sent my husband a box of treats for munching on during Rt. Another did a week of chauffeuring. All of them made regular contact etc. 

so, it’s really not all doom and gloom. A lot of positives come out of the experience. Give yourself time and your emotions will settle. This has come as a ‘life jolt’ - a wake up call, a change in how you understand your body and your self identity - for you but as we have all said, things do settle down and you realise that you have jumped from the 50% of people who don’t receive a cancer diagnosis’s to the 50% who do and that cancer is now very treatable even if not curable.

Hi John,

I had the radiotherapy and hormone therapy treatment.  First the HT (Hormone Therapy) started , and after 3 months (which I was told allowed for the tumour to shrink) the 2 months of radiotherapy commenced.

During the first 3 months of HT not much changed in my day to day life, I continued working as usual and do all my other activities including a heavy exercise regime. I was significantly more tired, and had hot flushes, but apart from slower bike and run times, life continued as normal. I did have to start adding some naps throughout the day.

The two months of RT (RadioTherapy) were more intensive, both in terms of logistics as it was over an hour drive each way, and in terms of tiredness. I was working half days for the first month, and then got too tired to work properly and didn't work for the second month of RT. For me, after radiotherapy the fatigue took hold for a couple of months and I was not able to work, though I was still seeing family and friends. I'm just now (3 months after RT) returning to work, and plan/hope to work through the remaining 2.5 years of HT. I do feel an impact on my memory and concentration, which is not uncommon for HT, and suffer from fatigue, time will tell how it impact my work (I do data analysis).

It's definitely not all doom and gloom, you make some small necessary adjustments, maybe do a bit less, and continue on with your day to day life. ohh, and nap, napping is key :-)

G