Feeling Angry

Hi Mr Bluesky 

(ELO fan?) Welcome to the online community. So sorry to hear about what you and your fiancee are going through. Those initial weeks and appointments are totally overwhelming for everyone. I get it. 

My husband was diagnosed in Sept 2020 out of the blue with a Grade 4 brain tumour. He initially tried to hide his visits to the dr from me but when he was referred for an emergency MRI and CT scan he realised he had to come clean. That was 7.53am on 26 August 2020 ( the date and time are ingrained in my memory) and from that moment on our world has never been the same. In the space of 3 weeks he had been diagnosed, had surgery to debulk his tumour, been readmitted due to an infection and then finally came home on 16 Sept. He had had a seizure pre-surgery and to be entirely honest, the man I knew disappeared at that point to large extent. 

Prognosis is a tricky one I've discovered. Ours has changed 3 times and never for the better and the NHS's new buzz word(s) seems to be  "a few short months." On 16 Sept 2020 we were told he had 12-15 months. They're almost up and physically he's still strong. He's a marathon runner and still able to run daily. His tumour was in the speech/language/understanding area of the brain (Broca's area) so he's now more like a dementia patient. We've had letters over the piece that said he had a few short months and he's still here so to an extent take the prognosis with a degree of scepticism. Take each day as it comes and on the tougher days, take each hour as it comes.

Please don't beat yourself up about how you are handling this. Its a hugely overwhelming thing for you to get your head round too. It takes time.  Lord. 15 months down the line and I wonder if I've got my head round it all. You will bring out the best in each other and the worst as your emotions clash but that's normal.

 It’s always good to talk so do 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.To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.

There's also another group that you might draw some support from. I know I have over the months. Its the Brain cancer forum - Macmillan Online Community. There are plenty of folk there who "get it" and are on hand to offer a virtual listening ear and a virtual hug when you need one.

I'm not sure if any of this has helped. I hope it has. This is a rollercoaster journey that involves so many levels of emotion from all involved but please be patient with yourself. Take time to take care of yourself. That "me time" is essential to help you cope with things. it's not selfish. For me, "me time" is a walk after work to clear my head or a coffee/drink with friends or simply a few minutes listening to music or reading my book. You need to keep your inner batteries charged.

Now I'm sending you a huge virtual hug. Breathe. You are doing so much better than you give yourself credit for here. Stay strong.

love n hugs

Wee Me xx

Hi Wee Me, 

Yes we are both ELO fans and Mr Bluesky has become our song.

Thank you so much for your message, it has certainly helped knowing there are others out there in similar situations.

I think we are both in a place where we can't really believe it's happening, although I think obviously it is much more real to her than me.

I do need to reach out and call the Macmillan team because one of my biggest angers, which I can't tell L about and it probably sounds selfish but I'm angry she is going to be taken away from me before we have had a chance to do all the things we talked about. 

We have been together three years and were planning our wedding for June next year, we're in the process of buying a house together as well and I can't believe that someone thinks it's fair to take her away before we have had a chance to do anything we planned.

We are going to get married just after Christmas but it is going to be a very small family affair now, I'm waiting for my sister and brother in law to let me know when they can make it over from Australia then we can get it all arranged

My anger keeps building up and I can't tell her why I'm angry because it sounds so selfish. The problem is it then comes out when something trivial gets under my skin.

Thank you again for you kind words and wishing you both the best.

Hey there Mr Blue

Big hugs to you both! It's the news that nobody ever wants to hear.  Its understandable to feel angry, upset and everything you're feeling.

My then fiancee now husband was diagnosed in June 2020 with stage 4 lung cancer with spread to his brain and other organs. All that from a trip to a and e cos he was feeling a bit dizzy.  

It's normal to feel all the emotions you are both feeling, it's shock, it's traumatic and we are human so don't be too hard on yourself. 

What I've found since his diagnosis is to live in the now, do today and try not to think about what's to come. I've found that doing this enables me to cope.  It's a hard journey and at times will test you. But it also shows you how strong you are. Once you get into the treatment sessions and the routine, it becomes a bit more manageable and less overwhelming, though if I start thinking about the future, that still hits me hard in the stomach. 

There is a lot of support available, if it's there, take it. We have some amazing medical support from the local Hospice who are there for us both. 

This forum is wonderful. It's safe and you know everyone here has shared experience of what you're going through so understand. 

Much love x

Hi

I hear you. I've a fair few questions that will forever remain unanswered myself but, hard as it is, you have to put those thoughts aside and enjoy the moment. A small post-Christmas sounds lovely.  I hope it all goes smoothly.

There's always someone around here to listen so know that you're not alone. If you feel you do need a good rant then there is a group/space on here for that - (+) The Room - Macmillan Online Community. Not ventured in there yet myself.

Hang in there. Stay strong.

love n hugs

Wee me xx

Hello there, I found myself on this forum as I too are finding myself angry quite often and not dealing well with my emotions. My husband was first diagnosed at the age of 30 almost 6 years ago with a low grade glioma which they debulked approx 80~ 90%. We carried on a pretty normal life considering after his recovery. We welcomed our 4th baby into the world 3 years later , and just 3 months later told his tumour had returned this time grade 4. They removed the new tumour and then  He endured the 6 weeks of radiation and chemo, completed 2 more rounds to be told there were changes and possible progression. He began a new chemo and tumours remained stable until 2 and half years later (sept 21). Unfortunately this time they again could operate however wouldn’t be able to safely remove it all and may leave him with weakness on his left side. He had surgery two weeks ago. He’s lost some use of his left arm and has some weakness on his left leg. This means he can’t cook or clean for himself and needs constant supervision. It’s so hard on him, being used to be so fit and active to having to be looked after 24/7. It breaks my heart, but I’m already finding life hard, looking after him and my children, everyone says take care of yourself but it’s hard, friends come to sit with him but bring all their kids and partners so where I see and opportunity to get the house I’m now hosting for everyone. People are visiting now which is lovely but frustra5ing because he’s spent years and many months well and they don’t bother till now and make my life that bit harder. I’m on constant standby to visitors and maintaining the house and chores as well as my husband and the kids it’s impossible to take time for myself, I’m 36 and mourning the loss of my husband and partner already and constantly frustrated with others. I’m getting cross and not nastily but letting my kids and partner know how tough it is, when it’s not fair on him or them. I love my husband dearly but find I’m dealing with so much I’m not handling my emotions well and certainly don’t want to make his life any harder than it is. I’m just struggling also knowing that he has active tumour and left with these deficits that time isn’t on our side so much anymore and anticipating the grief myself and my kids are going to have. I just can’t help hide my frustration at certain family members constantly visiting when they’ve never been for so long and also ruin my plans in the meantime, I just get no time to just chill. 
im sorry I’m rambling I just feel your frustration and understand. I wish I could say after 6 years it’s gotten easier. I think I need to go back onto my Sertraline or maybe start counselling to some effect. Anyway if you got this far thanks for listening and know you’re not alone.