Emotions like a rollercoaster

Good morning Cary Atid and welcome from a wife whose husband was diagnosed in July 2020 with advanced prostate cancer which had also spread to abdominal lymph nodes and is still going strong on this rollercoaster. Firstly condolences on your loss which must have really brought things home to you.

Oh how I recognise the lying awake and checking that he is still breathing when he was first diagnosed and undergoing treatment and even now I still have a problem with insomnia so I do recognise your anxiety. It sounds as if your husband has been put on Triplet Therapy which is a combination of a hormone injection, hormone tablets and chemotherapy? If this is the case then this is one of the protocols which has been shown to give good results for many men so maybe your husband isn't such a guinea pig. When my husband had chemotherapy he found that each of the cycles followed a similar course but the fatigue did build up the more cycles he had. Exercise is good but also not to push himself too hard and to listen to his body.

You have asked the question about how do we cope with the emotional rollercoaster of support. First thing to remember is you are not superwoman and don't bottle it up - we are allowed our wobble days and I hope that just coming on here has given you some relief. When my husband was first diagnosed I tried to hide my feelings and fears but that did neither of us any good so we made a pact to share everything so that we both knew how we felt. We then decided to live more day to day and live life to the full - we can honestly say that this has brought us closer together and we were close before. You still have a life of your own so it is important to carry on with the things that you enjoy doing. Be positive. I found it useful to learn as much as I could about this disease so that I could get some idea about what to expect and what I learnt was that there are plenty of tools in the toolbox even for men with advanced prostate cancer and that there is more in the pipeline. Looking after yourself is equally as important as looking after your partner and that means both mentally and physically - if you need to talk then there is help we can point you in the direction of. Ask questions, don't stew, someone will usually get back to you fairly quickly with a reply.

I am sure others will be along soon but remember that you are now part of a large family who understand what you are going through and will try and help if they can.

Good Morning Cary (Cary Atid) 

Another warm welcome to the Macmillan Online Prostate Community, although I am so sorry to find you joining us, I am Brian on of the Community Champions here on the Prostate group and, yes, I also have Prostate cancer.

I can't add very much to the cracking post above from Alwayshope. From the point of view of someone who has cancer and sees the devastating effect it can have on friends and relations I fully understand your "rollercoaster of emotions" and it's just the normal reaction when a loved on has a cancer diagnosis.

Let me give you a few suggestions to help:

* Do you have a "Maggie,s" near you - this is a cancer support charity where you or both of you can drop in, have a drink and discuss any issues and obtain support on the journey - link here - Maggie's

* Here's a useful link to our guide to - Emotional Support For Carers.

* We have two additional groups you may want to join for additional help during this journey and here are the links:

Carers only forum  and Emotional support forum 

* Our Support Line on 0808 808 00 00 (8am to 8pm) is there for both of you - just give them a ring - they can offer you plenty of additional help and support.

I do hope the above helps. If I can do anything else for you please do let me know. We are one big family on this group so feel free to join in and ask anything, nothing is too trivial.

Best wishes - Brian.

Hi Cary Atid welcome but sorry to hear of your loss.  On my chemo treatment I had the infusion on day 1 and felt fine, on day 4 I started to feel muddled and tired but by day 8 my head had cleared.  Fatigue built up over each round but your OH will be monitored carefully.  Keeping a diary helped (you can use your profile on here and also view others profiles by clicking on their name or avatar) as the cycle repeated on each chemo session.  
How do we cope with the roller coaster, well we take each day as it comes, we appreciate each other and things around us more than we did, we have knowledge that our oncologist has more things to treat us with.  I can’t say chemo was easy but he will get through this and staying positive and fit (listening to his body) are so important.  Good luck and please ask anything as your journey continues.  David

Thank you. Stewing, yes, this is what I do, and always have done, and I recognise it's not doing me any good. Your point about getting on with my own life is also really helpful, but also problematic. I've had a couple of really good days when work has been absorbing, giving me a good excuse to step away from the cancer situation. Then I feel I have to deal with the guilt, because I have the luxury of stepping away from it during working hours. However, in a conversation with the Husband this morning, I realised he doesn't want me shadowing him when he can just get on being 'normal' (with a mask on in groups). 

Wow! Thank you so much for the signposting. My husband is an over-communicator and is blogging about his journey. It's part of his coping mechanism to turn experience into teaching- or learning points. By contrast, I tend to let him to the talking, which makes it seem like I have no opinion or emotion. I think the forums you mention might help me put things into words.

Hello again Cary Atid . I think your husband has hit the nail on the head when he wants things to be 'normal' but I can also recognise the mask - my grandmother had a great saying - smile and smile and the world smiles with you, cry and you cry alone. We just have to learn that at times we do need help and we have to find our own coping strategy - some write a daily diary, others join a support group, others take up a new hobby, talking therapy, going out for a coffee, finding time for ourselves because we cannot crumble. Why the guilt with working, you have to secure your own future but make sure that the time you have together is quality time by planning bucket list trips.

Thank you. He's someone who tends to be at 11 on the dial of life, and it was such a shock to see him dialled down to maybe a 5. I will try to live more in the moment. 

Perhaps I should clarify, he was advised to wear a mask in crowded situations. He concluded that an FFP3 was mostly likely to protect him. So, he happily goes into town looking like a suburban Stormtrooper.  

About the guilt, it's the fact I can go into my workplace and loose myself in sorting out stuff that has nothing to do with his cancer. But I've come to realise we both do this: use work as a distraction activity. The bucket list is something we never thought we needed (!), and now getting our heads around. I think we're trying hard to fit a load of things into this weekend+ as he's going to be a bit out of it from Tuesday. 

Hello Cary Atid 

It's no problem - we do what we do here but first and foremost we look after our own. Cancer causes people to struggle with their mental health and sometimes they use different coping mechanisms to divert their thoughts away from the main issue - and this could be the issue here.

He sees you as a possible danger as you wish to help him through a change in his lifestyle which he thinks he can cope with without any help. I was like that at first - I thought I knew everything but realised quite quickly there was more to a cancer diagnosis than I was aware of and the effects of the cancer and it's treatment were so far reaching. Keep doing what you do for him - he WILL appreciate it in the long run.

As an aside - your user name - (I am surprised Alwayshope hasn't picked up on this as she lives in Greece) Isn't it the female body on a Greek pillar? (I have been wrong before!!).

Stick with is - we will get you through this.

Best wishes - Brian.