Hey 
Things are just so hard aren’t they? I feel like I am clinging on by my finger nails juggling work, the boys and D’s illness.
Our youngest had his birthday and year 6 prom on Friday … as it’s at my school, I was there getting it all ready and our boy was at his friends getting ready. I had organised for another friend to pick D up and watch our boy walk the red carpet … D didn’t want to go and told our friend not to pick him up, so he missed it. Our son had his party at a trampoline park on Saturday - again D didn’t want to go so stayed at home. He’s been really quiet and just ‘not bothered’ again, watching films and obsessed with Trump and Biden! We never seem to have food in the house as he doesn’t think to get some things in for tea when he’s at the shop while we are at work. I come home and have to sort it all out. This evening while I was doing the ironing he was happily telling me that this week coming up he is meeting up with one of his old teachers from secondary school - his mum sorted it apparently. I’ve never heard of this person ever! I told him I didn’t understand why and he snapped back and said ‘maybe it’s because I am dying’ … I couldn’t help myself and said then it would have been nice if he spent time with his 11year old and was part of his special weekend making memories … I know I shouldn’t have but it’s so painful … and hard to understand sometimes. He then told our boys that mum was in a bad mood and to leave her alone! I’ve read all the material and know why this happens …. But it’s so hard!
We have scan results a week Wednesday and I’m convinced it’s grown back … we are a year down the line and when treatment stopped he wasn’t too bad but the last month he seems to have changed again, muddling words up, so tired and ambivalent about us as a family. He gets very tired and just looks grey - I’ve also noticed him start to drag his feet again. Those of you who read my first post may know that last year just after diagnosis he rapidly went down hill and nearly died - saved by being blue lighted for brain surgery. He finished the term as a headteacher in July and by August he was like an old man with dementia … I’m scared of how quick things change. How on earth do you cope in between scans? I cannot help but take my mind to the worst case scenario … I’m exhausted with it all ….
I’m hanging in at work and trying my best to keep the school together and ticking over - I’m good at putting on a brave face and supporting everyone else. I have/had a good friend in the school but she can’t cope with what’s going on so her strategy is to ignore it and never ask … I’m almost invisible when she is asking everyone about their weekend etc … her husband who was friends with D has taken a whole year to finally make contact with him through a text. They have never been to our house since his diagnosis and if she sees him, she avoids him or cries. This has all made me so angry and I can’t take on her ‘grief’ so to speak … I need people around me who I can talk to or just be ‘me’ …. I’ve had to leave work at a lunchtime to come home and cry as I can’t bear to be ‘ignored’ and feel that this defines me and us as a family … will I ever feel like ‘me’ again and be treated like ‘me’? Does that make sense? I don’t mean it in a selfish way. I’ve now heard she is upset and jealous of my other friendships … but her avoidance and lack of texts, check ins or just a genuine ‘how are you’ has led to this situation … I can’t navigate it … I don’t have the physical or emotional resilience …
Friendships have definitely changed since this has happened to us … I can count those absolute diamonds on one hand … and that’s all I need … can anyone relate to that?
We tried to go away last weekend camping with friends (not far, only 20 mins away) … I had to bring D back as it was too much … the boys were panicking about him - he looked dreadful … I looked at him and my heart was breaking … my vibrant, energetic husband looked like an old man, no muscle left in his arms and legs and he was just grey ….
People constantly say about ‘making memories’ but life isn’t like the movies .. it’s painful and hard and things don’t go to plan … my heart is breaking each day and I can’t get the words out and tell anyone or quite frankly, some people don’t want to know and avoid any conversation …. this makes me keep it in even more ….
So sorry for a muddled and confused entry .. scanxiety is so real … you get to the 3 months and even if things are ‘stable’ , you are then waiting for the next one … carefully observing any changes and waiting … does this get any easier?
I must try and sleep ready for a day in school tomorrow where I will be asked if I’ve had a lovely weekend … except by the very few (2 to be exact) who will gently give me a squeeze as they go about their business …
Night night x
Sunflower73 We worry about before (care), we worry about death, we worry about after... its constant. Small things I get that... problem is mostly no one really knows in this. Is it side effects from medication, the tumor, something else? Even doctors and nurses admitted to me that its not an exact science once palliative care aspect is reached as all they can try and do is "manage" things and that takes balancing medications out which is constant. Moods - very real. M struggles with anxiety in a big way and still on 6mg of steroids aggravates the mood quite badly, being totally obsessive about food and then wanting to clean the house (which she cant do but tells everyone else to do it)...
I have "indifference" too... lack of emotion (tumour on the right frontal side mainly)... she is very "distant" and definitely not "in touch" emotionally" with the situation.
So we all have to soldier on right? I've only been doing this three months now and its all a bit of a blur... how long more... i dont know. Strangely I find that telling myself that it could be years actually helps because it helps me "accept" some things about my new reality and makes "pushes" the inevitable out (taking it away from my mind)... if its shorter then on good days - it is what it is! On bad days I dont cope so well and overwhelm.
I dont have answers for you... my counsellor said "frankly there are none"... its not a normal situation for anyone. So you are living in an abnormal situation where no one is equipped to cope and yet you must... I sometimes wonder if we have this worked out as a society but thats a separate issue 
but we do it because we care, and for me, if the roles were reversed, I ask, "what would I want and need from my partner" and then carry on. It can easily happen to anyone and that's what makes this so tough. One cannot understand it unless you have been through it and again also what makes forums such as these so important. You are "speaking" to others dealing with similar situations and "get it"...
Keep posting... keep going. On the "other end"... you will likely have PTSD... but that's for another day. Just do what you can... you cannot do more for today. Be kind to you (mentally and physically)... sending you a hug!
Hi Sunflower73
just catching up with this thread. I'd taken a couple of weeks away from the community and only logged back in this week.
So much of what you describe behaviour-wise resonates with me. At times it feels as if you are living with a very broken stranger and its beyond hard. I get it.
G always was a law unto himself so I quickly reached the stage that I let him do his thing and stood by to pick up the pieces. There was no reasoning with him from very early on.
He too developed steroid induced diabetes but it was late in the game and they never really did much about it. The steroids were reduced over a period of time and that helped a bit. He always had a sweet tooth but he was out of control with sugar intake for a few weeks. He was adding sugar to his bottles of juice and at one point we were going through a bag of sugar every few days. I don't take sugar in anything so it was quickly noticeable.
I hope today's scan results gave you some answers. Scan results day is always a tough one.
Sending you a huge virtual hug and lots of strength. Keep going. You're coping so well with this rollercoaster ride.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Evening all
I’ve just sat down after a long day and a long drive. We were told today things were stable and live to fight for another three months until the next scan. Lots of friends have sent messages with party emojis and words such as ‘this is the best news ever’ … I cried when the consultant told us - relief but also a realisation that we have to go through this all again in a few months. I don’t feel like ‘party emojis’ and for that I feel so guilty … of course I’m pleased as I had convinced myself that we were getting bad news … why do I feel so flat? The anxiety doesn’t go .. it just shifts a little … such strange emotions and it’s hard to share this with people other than yourselves who ‘get it’.
On a lighter note .. we have decided to buy a piece of art each time we get a stable scan result so we can add some memories to our home … our first addition today was a pottery seal that looked so kind with his eyes looking up at us … we were drawn to him!
Thank you for listening again x 
Hi Jobo
you make an interesting point about PTSD....
Having come out of the other side of this journey after just over three years of riding that horrible rollercoaster, yes, in some sense the PTSD is real. Work was my sanctuary too, my "normal", but I did take a break from it for 10 weeks or so then built my hours back up over a further 6-8 weeks. One of the best pieces of advice I was given by a colleague was not to go back until I was ready as once you go back to work everyone expects you to be 100% and you're not.
Please don't underestimate the mental, physical and emotional toll this rollercoaster ride takes. When you're in the thick of it, you just keep going. You have no other choice. Its only when it stops that it really hits home.
One thing I can promise you and everyone else on that rollercoaster is that you will get through this and this group will be here to support you every step of the way.
sending love and light and hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
