Thoughtful

Hi @bim07, welcome to our club - full of some of the most wonderful kind hearted people we have ever found brought together by that one dread word "cancer'.

Cancer is often a great unspoken - we see the statistics 1 in 2 people in their lives but of course it is never going to be us or someone we love. Many people fear others reactions and bottle up their emotions - I know many of my family and friends could not really cope with what happened with Janice. For some they had a previous experience of cancer that was too painful for them to process and for others they simply do not know what to say so will try to shut down conversations.

Not getting enough sleep can rapidly turn in to a major health issue - have you talked to your GP about this? I know when that happened to me I ended up off work for some time - fortunately I have a reasonable employer with a very supportive sick leave policy but if could easily have been much worse.

Has he had a needs assessment and a carers assessment for you? Does your employer offer something like an employee assistance programme?

To many at my work they call me an inspiration - I found that quite hard to accept, I am just dealing with what life throws at us and sometimes it hurts.

It is so easy to look at other peoples stories and try to compare - and we see people all the time worried about trivia - to them at that time however it is a real major problem in their life - but together with compassion and understanding we can all help each other and perhaps bring some cheer and positivity to us that we can all share.

Keep posting, ring the helpline whatever helps you - you are special and he needs you. Perhaps with a little support too your friends and family can learn to be the help you need.

<<hugs>>

Steve

HI Bim07

sorry to hear about the journey you're going through. Personally, I've taken a lot of comfort and support from this group. Friends and family mean well but unless they've experience of this journey they don't truly "get it". I'm in the same boat. I have a great bunch of supportive friends but of late have found myself saying "I'm fine. Everything's ok" just because its easier than explaining. 

My husband was diagnosed with a terminal brain tumour (GBM4) last Sept and it's been a rollercoaster journey to say the least for him, myself and our two kids (23 and 21). Like you I work fulltime (from the living room - God how I hate the sight of my living room now!) and am trying to keep the house running, make sure the kids are ok and look after my husband. He's going through a spell where he's actually physically ok but I can see a gradual decline mentally which brings its own worries. 

If I've learned nothing over the past few months its that you need to take care of yourself too. Everyone tells you that till you want to scream at them but they're right. Take time for a walk/run/yoga/whatever, read a book, listen to music/watch tv...do something just for you. It helps. 

Hang in there.

Love n hugs

Wee Me xx

Hi Steve,

Thanks so much for the warm welcome and also for taking the time to reach out and send me such a lovely message; it's really kind of you.   I am so very sorry for the loss that you have suffered, and think it is remarkable the support and care that you have shown not only me, but many others on here from what I can see.  Thank you.

Your message made me think a lot and I think I am my problem actually ....

I could sleep in another room easily to sleep at night, but I stubbornly refuse to leave his side as I want to be there with him and for him.  As for work, I am effectively the boss - I am one of the Board Directors.  I have a team working below me and they know everything that's going on, but I stubbornly refuse to let my personal life affect work.  I sat in the hospital car park and worked every single day for the months he had radiotherapy.  Aside from being stubborn, it really does help me to feel like i am in control of something, and it is hugely important to me that I keep this as normal.  My husband is the same (we are both finance professionals in our early 40s) and he hasn't stopped working throughout either.  The amount of meetings he had attended from his hospital bed via video call.  People think we're nuts, but it's a coping mechanism and it works well for us.

Typing this out has made me realise that my real problem is not having an outlet for my grief - am hoping this forum may help with that.  Currently I burn it all up at 5am every morning with a long run and that does work for the most part. Most of the time I am ok and other times I think I'm going to burst - just want to scream and hit things.  Maybe I should run twice a day!

My husband knows I am affected by it, but I am nothing but cheerful, happy and loving around him - I do have my moments when he is upset and it gets me too, but for the most part I hold it together.  I have to be strong for my step daughter whose mother it not in her life (21 and at Uni).  I keep his parents informed and am always calm and collected to keep them calm and ok.  My mother is suffering from early onset Alzheimers which was diagnosed last year and really rocked our family.  My dad is struggling to manage (early 60s), so I refuse to add to his burden. He knows what is happening, and whilst I know he is upset about it all I make it clear to him that I am fine.

Sending a hug back - I really do miss those!

Hi Wee Me,

Huge thank you for taking the time to drop me a line.  Both you and Stephen have been so lovely - this is exactly what I was hoping for.  Just knowing that I am 'with' people who just get it without question makes me feel lighter in a way.

I am so very sorry for the diagnoses that your husband has had.  I can't even begin to imagine how utterly world shattering that must have been for all of you.  Sending much love and hugs to you all.  How are you coping?   Do you just focus on today/now?

I am not sure that my husband will make it through this as options are running out, but at least we have them.  I cannot even begin to imagine having to deal with what you are, and with two kids as well.  I know that somehow you just deal with it because you have to.  There is no other choice.  I have a 21 (22 on Monday) step daughter whose mother is no longer in her life and she is really struggling with this - it's certainly exhausting being the glue that holds everything and everyone together.  I feel like that at times, and sometimes I have no idea where I get the strength from.

Thankfully I'm now working at a desk, but my husband was bed bound for 2 months (his stoma was severely prolapsed and herniated), and I worked on a small footstool in our bedroom for the whole of that time!  

I can totally relate to what you say about your friends. It's exactly the same for me, and just tend to say 'we're ok' or something generic like that.  I take SO much longer to reply to messages than I ever used to, because I have to drum up the will to do it, and then feel terrible about it as they are only being caring.

Just taking time to reply to the messages on here this morning has made me feel better/stronger already, which is exactly what I was hoping for. 

Really glad to have 'met' you.

Hugs, xx

HI Bim07

somehow we all find the strength but I've no idea where it comes from. 

I saw from your reply to Steve that you run. That's my husband's coping strategy and thank God he can still run for now. If that ability goes then we'll be in a whole different situation. Getting those miles in every week is his focus. He's a marathon runner. I'm more of a 5km girl but yes, getting out first thing in the morning to clear your head for the day is wonderful. The Scottish weather's been so cold and windy of late though I've not been out often enough so have been doing some yoga at 6.30am to set me up for the day.  It's just getting that "me time"..that bit of the day when they're still asleep and the world feels normal. I've also been walking in my lunchbreak and after I've logged off from work for the day to give that break between the work life and the home life, if that makes any sense.

I can sympathise with the working from a footstool. That must have been a nightmare but we do what we have to do. I'm a team manager for a bank and running a team remotely has been a challenge. My employer and my team have been wonderful and like you I don't like the days that I feel my work is impacted by the shit storm around me. After George was first diagnosed there were a few days where I was logged on and purely communicating via email. I had my "do not disturb" on my IM and just used that time to get my head round balancing work and all the other things that were going on.

Just now I'm going from appointment to appointment and bouncing along between those. The mindset is along the lines of - ok let's get to the appt on 24 May.... then it will be let's get to the appt on 14 Jun. On the tougher days, it's been lets get to lunchtime, let's get to logging off from work time, let's get to bedtime. It's all mind games to keep me going. 

I also journal a lot. That really helps me but then I am also a blogger/indie author so words are my thing. Journaling gets all the things said that you can't say out loud. It's quite cathartic.

The feelings of wanting to cry/scream/punch things are normal and actually quite healthy emotions ( as long as you don't resort to actually punching things). They are all signs of resilience. The most resilient among us are the ones who show the emotions.

Hang in there. Stay strong.

love n hugs

Wee Me  xx

Hi Wee Me,  

Sorry to take a while to reply - we have had a bit of a wobble this week.  My husband managed to catch one of his nephrostomy tubes and the whole thing came out of his body, so I had to get on the phone to the cancer nurses who arranged for me to get him straight onto a surgical ward.  They then found out his blood isn't clotting, so can't do the procedure to replace it yet.  Apparently the deficiency he is suffering from affects 1 in a million people.  We are so used to the seemingly continual 'bad luck', that no one knows what to say to us anymore!  I struggled for a day or two, but was very pleased to find my brave pants again this morning.

I have to say how amazed I am with your husband.  He sounds like an incredibly strong and resilient man.  You must be so proud.  I had to smile at his name, as I'm Georgina and everyone calls me George :)  I am so pleased to hear that he is still able to run, especially as it is such a big part of his life.  To be running that distance sounds like pure torture to me and I still find it incredible that people can actually do it.  My furthest is only 7 miles and that'll do!  I think there's something about being outside and the fresh air that just makes everything a little bit better.

We do sound similar in terms of our work ethic and approach to work.  Like you I hate it when I think my work is in any way affected by a bad morning or something that has happened at home that day.  The reality is that I put in so many hours that it really doesn't matter and I know that it probably isn't impacted, but I am so over sensitive to it and really give myself a hard time about it.  Do your team all know what you are going through?

I'm doing the same as you and just focussing on the next milestone.  I hope you don't mind me asking, and please don't feel like you have to answer at all, but do you ever let your mind/thoughts go beyond that?  That's something I haven't been able to do and actively won't let myself, but then I do worry that maybe that's not right and I think I'm probably in denial but worryingly I'm ok with that.  Then I talk myself out of it as surely there can't be a right or wrong way to cope - we are all different and cope and deal with things in different ways.

How are your kids coping?  My step daughter has just finished her dissertation (2 days ago) after a 2-week extension due to what we are going through as a family and she is struggling in her own way.  I told her that I had 'met' you on here and that you had kids of a similar age - she was curious to know how they were feeling and coping and she was thinking of joining a forum on here as well to see if she could connect with others more her age to talk/share with people who will just 'get it'.

Anyway, I hope today has been an ok one for you and your family with some smiles and laughter thrown in too.  Those are always special days :)

Love and hugs back xx

Hi

sounds like you've had a rough week. Hope your husband is ok all things considered. Here's hoping things settle down for you all.

I finished up for a week's holiday from work yesterday and have to admit am a little nervous that without work to focus on for the next week that I may "unravel" a bit. It's the first break I've taken since Oct so it's long overdue. My team know the situation as do some of my fellow managers. I've been supporting several projects over and over the day role so have had to tell more folk than I would have liked purely from the point of view I feel they need to know in case I have to disappear in a rush or am having a bad day. Everyone has been so kind and supportive.

I also took the decision way back at the start not to mention any of this on my social media feeds. I felt that I didn't need the extra pressure of that and so far it's proved to be the right decision. In time I will confess all.

As for looking beyond the next appointments etc, yes I have occasionally allowed myself to think ahead. I feel guilty when I think about "life after". I guess the trigger for looking forward was that I bought tickets to a concert for my son and I for Feb 2022 and suddenly thought about where we might be by then. There are also daft things I think about - things like buying a thicker duvet in future (George never feels the cold so its the summer weight duvet all year round!) I guess it's all one step at a time and being as mentally prepared for that period of adjustment.

I've started to write an account of this journey that I may or may not share with the world at some point in future. I reached a point a few months ago where  I felt so lost and scared that I thought "I don't want anyone else to feel like this and think they are the only one in this horrible situation." I've been thinking  that this GBM4 journey is a bit like Dante's Inferno- you never know what challenges the next circle is going to bring. I've promised myself that once this is all over and hopefully we are in a less covid- restricted world that I am going to spend time at my favourite beach recharging my batteries. So when I feel really low I try to visualise walking along that hot sand with the ocean beside me. 

My son has been finalising his dissertation this week too. It's so much pressure on them at a time like this but he's been so strong throughout. We had a really rough experience with George a few days after he came home after his craniotomy and my son was an absolute super star. Long story short, we had to get George back to the hospital as his condition was deteriorating rapidly but he refused to get in the ambulance when I called it. I was awake all night with him and finally convinced him to let us take him to the hospital 30 miles away at 5.30am. My son drove us. I've no idea how he held it together to get us there but I'll be eternally grateful to him. 

The kids are coping in their own way. My son is the older one and he's using his uni work as his focus just now. Having that goal in mind has kept him together I feel. My daughter (21) is closer to her dad and has taken it harder. She had moved out last June just a couple of months before this all began so she's torn about not being here all the time. She's a mental health nurse and works full time. The plan had been that she would do her hons year at uni this year but she's postponed semester 2 until Jan 2022. Everything was just too much pressure on her so uni was the part that had to give. 

The message I've repeated to both of them repeatedly is that the three of us need to stick together, be there for each other, watch out for each other - we can't all be strong all of the time - and they get that. We're all there for George but he doesn't see how much this is impacting each of us. I guess it's just being able to be open and honest with each other and not judge ourselves. There's no right or wrong way to cope or feel - we just need to muddle through as best we can.

Hope you have an easier week next week. Hang in there. Stay strong.

big hugs

Wee Me xx

Hello Bim07,

Welcome to this group of carers. I hope you will find support and help here - and I know you will because this is a lovely group of people who are all going through a similar situation to your own.

I joined this group in 2016 (or maybe early 2017) when my husband's advanced prostate cancer was getting worse. All the hormone treatments stopped working. In 2017 he was put on chemotherapy due to extensive spread to the liver. He had 10 months on chemotherapy before he died peacefully in the hospital he had been cared for for 15 years and with me and our closest family friend by his side.

I decided to stay on this forum because I am hoping that my experience of having been the sole carer for my husband may help some of you here.

I am so sorry for the difficult situation you and your husband find yourselves in.

Lots of love, Mel

Hello Wee Me,

I am so sorry that you find yourselves in this difficult situation.

It is so difficult to keep it all together, isn't it, and to cope with all the uncertainty and also made a lot worse by COVID.

I actually decided not to go back to work in early 2018 when I could see that my husband really needed me at home full time - something he wouldn't have admitted but that was true - and I am glad I didn't go to work for the next couple of months.

Paul and I don't have kids but I can completely understand how the kids are dealing with this situation differently - we all do.

Yes it's very important to stick together because it is such a difficult time.

I know what you mean about the thoughts about the future that come to you. I have to say I was the same. There were times when my mind just went to those places: What will I do when Paul is no longer here? How will I cope? Or even questions like: What will the end be like when it comes? Or the thing you mentioned about the duvet... Yes I know that kind of thing very well and I think it is normal and actually healthy as well because to me it seems like our psyche is actually preparing us for the day that the inevitable will happen.

Hang in there, stay strong, and keep posting.

Lots of love, Mel