Please help! How do we walk this dark path?

Sandy5,

All we can do is to do our best. Easy to say that - given that I still ask myself did I do all that I could, knowing that I did, before my beautiful wife lost her battle. I tried everything to make her as comfortable when she had horrendous side effects. But I still ask myself even now! The worst was always when I had to leave her in A and E as they wouldn't let me in to be with her. I find that hard to forgive, regardless of Covid. Cancer patients have been let down at times in recent years and that is well documented.

Talk? We didn't too much as I took the view unless she wanted to talk about it then I wouldn't raise the subject. We weren't in denial, just always focused on and thought the treatment would have a positive impact, which it did for a while.

Cancer is simply horrible for all involved. Our loved ones absolutely the worst but what it does to us too cannot be understood by those who have not experienced a similar situation.

I never know if, by the end of a post, whether I have actually answered the initial question/s. I just hope that our sharing of experiences gives some strength to all who post or visit this forum.

It's tough but try to keep going!

WDJ

HI Sandy5

a warm welcome to the group. I'm so sorry to hear about what you and your husband are going through. I can relate only too well. My husband was 50 in Sept 2020 when he was diagnosed with a stage 4 primary brain tumour (glioblastoma) . It was sited in the area of the brain that controls speech/language/understanding. A seizure two days before his scheduled craniotomy caused some cognitive impairment and post-surgery there was a little more 

He's never been a person who was very good at expressing emotions- still isn't. In those first few days before his surgery he was very emotional but then since his surgery he has bottled things up and won't talk about his situation. That makes it very hard for those around him. While he was recovering from the surgery he would disappear and walk for miles on his own, just getting his thoughts in order.

You mentioned your husband is still in hospital - have you expressed your concerns to the medical staff? They are trained to support emotionally as well as physically so perhaps they can get him to talk/open up. Sometimes its easier to talk to strangers than to those we love.

As for what you can do to support him, my advice would be to be led by what he needs or wants. That's beyond hard to do at times but at the end of the day all we want to do is support them as best we can. Don't take it personally if he needs more time alone for a while. Its such a huge thing for everyone involved to process and come to grips with. I feel some days, even all those months down the line that I am still as lost as I was right at the start. It's a roller coaster ride of emotions. 

Don't be too hard on yourself here for how you are feeling. You're travelling a journey here too and its an emotional one. Be assured that all the emotions and feelings that you are going through are perfectly normal. Take time here and be patient with yourself. Our kids were 20 and 22 when mu husband was first diagnosed and they've both been incredible throughout. I'd encourage you to be open and honest with your family (if you feel its appropriate) It's scary for them too but keeping things open and honest, even expressing your concerns to them does help them cope too. 

This group is a really supportive safe place so please reach out anytime. There's always someone here to listen who understands, someone to hold your hand and someone to offer that virtual hug when its needed. If I can help in any way, reach out to me.

It’s always good to talk so please remember that you and your family 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.

I hope this has been of some help. You're coping so much better here than you give yourself credit for (you'll just need to trust me on that one) Take each day as it comes. Remember to breathe!

Sending you a huge virtual hug and much love

Wee Me xx

Thank you for replying WJD. I want to say more to you, but at times I have nothing. You words did help lift me though x

Hi Wee Mee, thank you for repkying. I'm sorry you are on a similar path too.

As your husband's situation sounds similar to my husbands please can I ask, do you think he feels the same way as before the tumour? I really dont know how much my darling processes. He cries at times but then he seems more distsnt than before, he doesn't ask how I am, how the children are etc. He seems more insular which I actually hope he is  as I hate to think he feels the absolute devastation that we all feel. 

Also, how can we manage to stay positive when we've been told a time frame? (Albeit an average). 

HI Sandy5

Oh good question.... I think he still feels the same about his relationship with me and our kids, although he would never ask how we were feeling or if we were ok.

I think a lot of the answer here depends on the type of person they were before their diagnosis. It also depends on the impact the tumour itself has had on the brain. My husband's tumour has impacted his ability to understand/process information, he can no longer read more than a few words, he can only follow simple instructions. If I was to ask him to go into the kitchen and make a tea and a coffee, he would get into the kitchen and wonder what he was to do there.  It's so hard to watch. I was told after his operation that he would have communication difficulties and difficulty following instructions. 

I'm going to be brutally honest here - my husband is/was a control freak. He's one of these folk who doesn't think twice about starting a sentence with "I know you believe/think  ....." He's always been beyond stubborn too. These traits are going both for and against him these days. His stubbornness is what's keeping him going I feel. The control freak side of his nature though can be dangerous.  When he was going through his 6 weeks of oral chemo/radiotherapy he would shut me out as much as he could as he wanted to control the situation. He openly declared this was his issue and was nothing to do with the rest of us. Covid restrictions at the time meant I couldn't go through to the waiting room with him when he went to see his CNS each week. I was left sitting in the hallway waiting to be called through to join them. It never happened as he lied to her and said I wasn't there. Eventually after he confessed he' d been binning his daily steroids instead of taking them I contacted the CNS myself and told her of my concerns. She  was furious- he'd played her. I was there for his final appointment with her (only because she came and fetched me first) and she gave him a right good "mummy voice" lecture. The other side of this was that every day as I parked the car and walked him across and into the hospital, he would ask if we'd been there before and then argue with me when I said yes. He couldn't navigate his way from the front door of the hospital to the clinic. He has developed really strong coping mechanisms that cover up his true condition and its easy for folk to be fooled about how he really is, until they spend some time with him.

We  were given an initial time frame here pre-surgery of 18-24 months, that reduced to 12-18 months post-surgery then he developed some form of infection and had to go back into hospital 24 hrs after coming home. The time frame was reduced to 12-15months. He developed blood clots in his lungs a few weeks later and we were told they reduced that time even further. The 12-15month timeframe was up in November last year and he's still here. Physically he's in great shape. He ran the Manchester marathon in April and plans to run the London marathon in October. He no longer wants to know the timeframe. At his oncologist appointment (video call) last October it became clear to the kids and I that his perception of how he is really is/behaves differs from his. It was a difficult call but it highlighted to me how much denial he's in about all of this.

A family friend introduced him to her sister who has had 3 lower grade brain tumours.  She commented that he and her had the easy part to play in this as it was so much harder on those who love them to watch them go through it. He vehemently denied that and said there was nothing to affect us as he was fine..... our friend, her sister and I all just looked at each other as he stomped off. There's no getting through to him and I've given up trying.

Sorry if that's been hard to read but I want to be honest with you here. I sincerely hope your husband is of a softer/easy going  nature.

So how do we get through this and get our kids through this? As best we can is the honest answer. There's no rule book here so we have to do our best. I was open with my kids right at the start and said the 3 of us need to stick together, be open and honest with each other as we need each other to get ourselves and their dad through this. They've been superstars! Neither of mine have any experience of losing someone they love so I do worry about them. 

 I quickly discovered that taking time out for yourself is essential. It feels like a selfish thing to do but its essential for maintaining your own wellbeing here. It might just be a quick coffee with a friend or half an hour reading a book or going to the gym- but keep doing "you". You need that time for yourself. 

On the rougher/tougher days, break the day into manageable chunks. Take it task by task or hour by hour. 

I've tried various coping mechanisms and use them regularly. My main one is that I journal.  (I'm an author so words are my go to) Seeing the words written down takes some of the fear out them. It helps to get your thoughts in order as you can be totally honest in a way you might not be when you're speaking to a friend or family member. I also walk a lot and run when I can find the energy. I took up yoga about 18months ago and that helps too, although my aching hips may beg to differ at times.

Hold onto your sense of humour too - however dark the humour. Laughter can be the best medicine...and if we don't laugh, we'll cry as the saying goes.

I've one particular friend that has been there for me day-in-day-out  and they keep me going. As they keep reminding me, "it'll pass". 

We will get through this. We will support our husbands as best we can. We'll be there for our kids as we always are. I'm not saying its going to be easy but we'll get there.

I'm not sure if this has helped or not. Feel as though I'm verging on waffling now so I'll shut up. Please reach out anytime. 

Sending you a huge virtual hug. 

love n hugs

Wee Me xx

Hi Wee Mee, 

Thank you for your reply, as much as I struggle with accepting these words are actually mine, (still can't believe this has happened) it does help having your support.

I mostly feel dazed with hearbreak. Today I have these questions; 

How do we manage this when I am so incredibly sad that our future is no more. I struggle with that ALL the time. Our wedding song was "how do I live?" By Lianne Rhymes & I literally feel that is my biggest question now? 

Also, I feel I'm ok enough when visiting my hubby (still in rehab) but the rest of the hours in the day I'm like a sad zombie. Our 20yr & 19yr old children are being so brave, should I try harder to be more positive, cheery for their sake or doesn't it matter really?

Hi Sandy5

Be you. All these feeling and emotions that you are experiencing are normal. It's the most resilient among us who show our emotions and don't bottle them up and let them fester. Personally I feel I needed to go through all the emotions to help me try to get my head round what was happening to us as a family. It's only natural as a mother to want to protect our babies by putting on a brave face but they know us and whether we like it or not can see through the facade. Don't be too hard on yourself - it's still early days and all of these emotions are fresh and raw.

Hang in there. You are coping so much better than you give yourself credit it for. Trust me on that one. 

Sending you a huge virtual hug.

love n hugs

Wee Me xx

Hi Sandy5 - I felt I had to drop you a line as I completely  understand how you feel. When we first had the news, it was like I couldn’t breathe. My heart physically hurt and I couldn't begin to imagine how I could possibly live or breathe without him. It still scares me, only now it doesn’t scare me every single minute of every single day. I wouldn’t say it gets easier, but in time your head will get itself in the right place - not very eloquently put, but it will settle and the numbness will fade. My husband’s daughter is 23 and has lived with us since she was 8 (we are all she has) and whilst I have been trying to protect her, she seems to do best when I am open with her about how I’m feeling and cry in front of her etc. (her dad has been in hospital for just over 2 months now) You know your children best, but with my step daughter, it is 100% better sharing it all with her - both for her and for me.  We are all here to listen and support you as much as we can. Sending a hug and all good wishes x

So sorry you’re in the club that no one wants to join. In terms of how we walk this dark path, we all find different ways and please know you will be in different states of mind at different times.  When my husband was first diagnosed I went into a very difficult state of mind.  I was trying to be strong for him but then found myself inexplicably sobbing in the grocery store. I was feeling either numb or despairing. I thought about getting counselling but then could not imagine it would provide any help.  I reasoned that talking couldn’t change anything so how could it make me feel better?  Regardless I did make the call and found an excellent therapist and I did find the counselling helped me enormously. Everyone finds their own path, and you will find lots of people here going through similar things and sharing and learning from each other.  Keep connecting and you will find a way through that is right for you.  Best wishes.

Hi, thank you for replying. Today is a bad day, yesterday was my birthday and my hubby didnt realise, even though the kids got him to sign a card days before. Although in a way I hope however he is inside is actually sheilding him from the painful reality we face.

I miss him so much and just cannot see past the pain of that and the heartbrealing thought of having a future without him. It makes me sick and so very sad. I try to be positive that he's still here and yet I can't seem to stop the sadness of what's ahead.