Angry

Yes, it seems to be a very well documented experience, it's mentioned much on the spouses' group that friends and family just don't get it. Some just don't know what to do/say, some may be in denial, some simply just don't get it at all. Whatever the reason, it never makes much sense to any of us.

Be assured you're not the only one wondering what this reaction from others is all about. I hope this helps somehow.

Take care,

WDJ

HI Bonjour

A warm welcome to the online community. So sorry to hear about what you and your partner are going through.

I can relate only to well here. My husband was given a terminal diagnosis in Sept 2020 (stage 4 brain tumour). I went through every emotion in the book and then some during those first few weeks and months. All of these emotions, including anger, are natural. It's the most resilient among us who show our emotions rather than bottling them up. It shows that we are addressing them...honest!

In those early days friends and family kept in touch on a daily basis then as time passed the majority of them have drifted away. I went through the phase of being anger and thoroughly pissed off at folk I thought better of but as time went on I realised a couple of things.  We don't really want them to "get it". This journey is cruel- do you really want your friends and family to have to go through it?  I also realised I had far more admiration for those friends and work colleagues who admitted that they didn't know what to say to me but acknowledged that they wanted to say something. There were a few folk who soared in my estimation.

I'm lucky I have a small core group of friends who have my back here. They are there 24/7 if I should need them.

At the start once my husband had had his surgery and 6 weeks of oral chemo/radiotherapy I too felt as though we had been left to just get on with it. We've not had the best experience with the medical team. There's been a lack of consistency and we've not built a rapport with any of them. To date we've had 4 separate oncologists involved, been passed through 10 hospitals for scans etc and the CNS who was supposed to be our "go to" person said to call the triage line if we needed anything. The one and only time I called they refused to help as he wasn't getting active cancer treatment at that time. Oh that made my blood boil!

This community however has had my back throughout. It's one of the reasons I became a community champion. Despite what we are still going through as a family, I wanted to offer love and support to those who felt as lost as I did at one point.

This group is a safe supportive space so please reach out here anytime. There's always someone around who gets it, someone to listen, to hold your hand and to offer that virtual hug when its needed. This is tough emotional rollercoaster ride but you're not alone.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

Please make sure that in all of this that you take time to yourself. Taking some "me time" isn't selfish. It's essential to help you keep those wee batteries charged. Even 5 or 10 minutes of fresh air or 5 or 10 minutes to sit and read a book can make a huge difference. 

For now though I'm sending you a huge virtual hug. Stay strong. Remember to breate.

love n hugs

Wee Me xx

Wee Me,

I too alway thought too many people were involved. Over the two years, five consultants in five different hospitals within 40 minutes of home.

The system just worries me. I still feel most anger toward one consultation when my wife was concerned about a particular issue and was told to focus on another at the time. I said nothing as she didn't want me to speak too much as I'd made her anxious at a previous one by asking questions. Well, I wish I had to this day as it was the issue that was left for another day which ended up being the one that proved fatal. I was later told that consultant was off with stress sometime after.

I still ask myself why didn't I say anything? I did though do what she asked. It wouldn't have stopped the inevitable but I maybe I wouldn't have this hanging over me when it comes back into my mind as it has done today.

What a situation we find ourselves in. 

Take care,

WDJ