Lack of family support.

Hi Axel,

Welcome to the forum. I am from your area and did you know that theres a "Maggies" at Addenbrookes that can help with support for you and your wife? maybe you can pop in when you are next there as they should be able to help. Below is a link.

I'm sorry I have no advice for mental health, only prostate cancer knowledge, but I'm sure there will be more people chipping in to say hello soon with some helpful advice.

I've just read your profile and you say you have aggressive locally advanced PC which is similar to my partners and that you will be on a research and training group with new treatments for the NHS. Do you know what those treatments are by any chance? I am also curious as to if you've received any treatment so far like hormone treatment since your December diagnosis?

Best wishes to you and your wife, please keep us posted on your progress and treatments.

L

 https://https://www.maggies.org/our-centres/maggies-cambridge//our-centres/maggies-cambridge/

Hello Axel H, 

I am so sorry to read of your issues - it's bad enough having to worry about your own issues, never mind a loved one too.

BW above has stolen my thunder in  advising you of. your local "Maggie's" - They are a cancer charity who provide help and support not just for you but all of the family - as cancer is a family thing.

I would also encourage you to give our helpline a call on 0808 808 00 00 (8am to 8pm 7 days a week) again the good people on the helpline should be able to point you in the direction of the additional help you need.

If I can do anything else for you please let me know - remember the Community is here for you 24/7 if you need a chat.

Best wishes - Brian.

Hiya BarryW

I'm going in for assessment to have SBRT. (Steriotactic Body Radiation Therapy).  This treatment has been shown to be more effective than the standard radiotherapy, with far fewer side effects.  The radiation dose is significantly higher than the standard but, instead of 6 weeks of daily treatments (excluding weekends), it'll only be 10 days - 5 treatments on alternate days - again, not including weekends.  The dose is pretty alarming (I was a Radiation Protection Supervisor in a former life) at 36.5Gy a session, aimed at the cancer on the prostate and potentially, another 20.5Gy aimed at the pelvic lymph nodes.  I've got a meeting with oncology to discuss this in a couple of days - I'll post something about that after I've been.

Cheers

Axel

Hi Axel.

I think you will find that the SBRT will be a total of 36.5Gy to the prostate and a total of 20.5Gy to the pelvic lymph nodes. The maximum dose to the prostate area would not normally exceed about 75Gy. 

Wow that sounds excellent! I look forward to following your journey with this 

best wishes to you and your wife 

L

Hello Axel we found the impact of the diagnosis was very profound! My husband refused to talk about it - to me, doctors, nurses etc. I desperately needed to talk! ( hence my joining this forum!) I also began to cry - those darned tears never stopped coming. I became obsessed with thoughts of losing him and also with my own mortality. I was scared silly of being without him. Then I started thinking and worrying about money! ( the diagnosis was autumn 2022 right in the thick of rising fuel bills and high inflation taking off). I’ve had my own health issues along the way too! 

so, looking back on the experience and a bit further down the track, I will repeat some advice I was once given.:

The past has happened and can’t be ‘unhappened’. Thinking about it is a waste of time and energy.

The future is mere conjecture and your fears might be unfounded and so a waste of energy.

the only reality is the here and now. Thinking about past and future makes you overlook the joy of the present .

i forgot these wise words but they are so relevant. I hope you can enjoy the little pleasures of the here and now!

and - to make you smile ( me thinking about the past!) once my husband had completed his radiotherapy he started saying ‘you can’t take it ( money) with you! In the last 10 months we’ve had a new car, a river cruise in Germany, a super duper Caribbean cruise, a trip to Paris and a wonderful day out with grandchildren. Yep- my worries about money continue - he might spend it all and leave me a penniless widow but hey - we are enjoying the here and now to the best of our ability

I hope you can show your wife our experiences in the hope she might get all the support us wives using this forum offer each other!

good luck and I hope all goes well for you both!

Such wise words WW as usual. My husband's concern is that I will be OK financially once he dies, bearing in mind that he is 11 years older than me. As you are aware we have to contribute to healthcare where we live and it became his recurring theme of 'can we afford it'. Strong words were said as there is no price to put on health. It took a while but enjoying life together takes priority for as long as possible.

My concern is that I will be ok financially if he goes first - me being typically selfish?!!!! In the UK you have to pay for social care if you have assets above £23000. However, what local authorities and care homes are doing is nothing short of scandalous! The local authorities set a ceiling on how much they will contribute for those people with less than £23k. This does not cover the full cost of care home residence. Therefore the fees for all self funders are increased to cover the unmet costs of local authority funded residents. 

There are some beautiful but mega expensive care homes locally to us - and some ‘dumps’. My ambition is to be able to reside in pampered comfort :) 

And my adult children just say to me - "Remember dad - we pick your care home".

I have seen one with a pub next door and a great chippy across the road - trouble is it's in Peterborough!!

Maggies is a fantastic support for both sufferers and other family members and will give you advice on everything from available help and benefits to yoga classes.  absolutely wonderful professional specialist people there to deal with everything - they will even help you fill in the forms to get the best out come so do go.