It must be so hard - do you feel that your son understands that it is the disease changing his dad? Have McMillan offered to help you all through this? I really hope so.  I would imagine that your husband also realises his mood and personality changes at times, which must be very scary and worrying to him.

Before I had treatment to the brain, I knew things were changing but in my case they have improved a lot. The problems I feel now are morphine related and I sometimes struggle with reality and fact lol. It can be really frustrating - the brain is a difficult one to deal with when the illness involves it - not just for the patient but for everyone.

The guy you love is still there sweetheart always remember that - this is just his "New normal" .  I so hope you can get the support and help that you need.  Please keep talking here, I am sure it will help you to write things down and share your difficulties. Hope you sleep ok x

Thank you Elaine, but sadly however much positive thinking will not change the end result.  My husband won't recover from this, we know that. His treatment has been palliative.  His mobility is poor and he's different in so many ways.  It's so hard here if really is xx

Yes luckily my son does understand the disease is changing his dad, and it breaks my heart when he wants time away from him and it's just us two.  Macmillan are visiting us now, she came the first time last week and was very good.  There is a thing at the Hospice for children that I hope to get my son involved in.  And yes my husband does know he has changed, but he can't help it and even said he'd go back into hospital to give us a break from him.  We all do understand, we just don't like the new normal as much as the original, however harsh that sounds.

Thank you for your kind words, and I hope you sleep well too, xx

Hi Mandy

Just logged on and see you had a difficult day yesterday. It is hard adjusting daily to 'new normals' especially when you take on board all the emotions that  your children feel as well. I spent a lot of time worrying about hubby and then kids/grandkids and finally had to admit that I could not cope with it all, all of the time and that crying was a release and talking about it helped some.  Hope that MacMllan and the hospice can help with all your stresses so keep talking and asking for that support - you all deserve it.

Even though  my hubby did not have cancer in the brain I did not like the changes I had to witness in his personality and it does not sound at all harsh when you write down your true feelings - it is the reality of living within a cancer family.  The lovely Max is right in that your husband is still in there and it is the sadness we all feel at the changes we have no choice but to accept, cry over, pick ourselves up knowing that we are going to see it through come hell or high water. 

If the hospice offers hubby respite care for a few days and he and you feel it will give you some strength, take it up and spend that quality time with your son and get a little me time. None of us are super human and taking a small break could give you just that little breathing space that your son needs just now.

Keep chatting it through. The forum buddies are listening. Sending virtual hugs (would not wish my cooking skills on you!!). Look after yourself.  Jules xx

Hi Mandy. So sorry to hear you've been so upset. Unfortunately that becomes the norm for some periods. I keep seeing the phrase the new normal. That was Allis saying too and it became that every day was a new normal and in reality there's nothing normal about it at all. Try to keep strong i know how hard it is but you will be surprised how much you can cope with. It's not until recently I have looked back on the last year and thought oh god how did I put up and manage with all that went off. On a lighter note the door us fixed. The man came straight out and repeated the door so no stressing over that now. The ham is on standby Mrs so don't be worrying about that. Just need 2 days notice for the glaze to marinade it yum yum.  I went for a meal with brother and sister in laws and their kids and mine last night. Had a really good night. I got the sister in laws drunk and we all sat back and laughed at then. I am terrible he he. A lot of the conversation revolved round Alli but it was all nice and only a few tears were shed. Well you take care and stay strong Mandy. If you get chance of a bit of respite take it and spend the time relaxing and recharging your batteries. Take care Mandy X 

Hi Deano,

Thank you for your kind words.  Felt better today.  The new normal does kinda help, it's a pointless exercise pining after the previous normal, because that has gone.  So when I feel meh, I'll think new normal and maybe that'll help or at least calm me and my expectations.  But I am concerned the Dex is making Chris worse not  better. On 8mg now so I will just keep close eye on him

Glad you had a good night last night, and yes you are terrible getting your poor sister in laws drunk haha. Sometimes I think I'd like a drink to chill me out, but I suffer from Asian Flush, despite being totally pale and English lol.  Google it. All I can say is it ain't fun.  

Well, cooker day number 3 tomorrow.  My neighbour assures me he will get it in if the men can't so I hope so.  I think my stress levels will reduce greatly once it comes.  I want to cook Xmas dinner at home for my family in case it's our last one together....  You can still send me the ham irrespective of my cooker situation, it sounds lush .

I hope you have a good week, still no decs lol, will let you know if I get me cooker tomorrow   Still managed a pot roast today though.  T ale heaps of care xx.           

Hi Jules, thank you for your continued support. I feel better today, not sure any tears left after yesterday.  I think as cooker day number 3 draws nearer I am getting stressed even more.  Some woman phoned doing a pre fitting survey and I thought oh no, they won't fit it!  Got in a right pickle.  But fingers crossed it'll all be done by tomorrow night.  Due to go out on work do tomorrow night but not sure I want to leave Chris as his mobility is dodgy at the moment.  I'll see tomorrow.  I know it would do me the world of good but I've no one to keep eye on him.  I'm sure he'll be fine, I'll just worry.

You and Deano have been so good to me, for me, to talk to.  You have both helped me enormously and I want to thank you both.  When people ask do I have support, I say I've met 2 wonderful people on this forum who have given me so much support and kindness and understanding.  Thank you.  

I'll let you know if the cooker actually makes it into the kitchen tomorrow, haha.  Take care, big hugs, Mandy xx

Mandy

Just a qiuck reply before I head to bed.  As regards the cooker will walk around with everything virtually crossed tomorrow that its third time lucky though I know Deano is on standby with the ham.

This time last year my hubby was dodgy with mobility (little did I know how short his time was to be at the time) but he insisted that I went to my work's do.  I felt just as you do now (had done every time I left the house for some months as it happens) but I did go, phoned when I got there,  sent text in between courses and left when I had finished eating.  Was actually out for only  4hrs (shorter time than when I was at work!!) and I think it was the fact that I was going to enjoy myself that tempted me to give it a miss.  It actually made hubby feel better that I had gone and he appreciated some time to himself without me fussing over him.(of course I left stuff for him to eat close by and made him promise to ring me if needs be and on a practical note we did a loo visit before I left as that would have meant him going upstairs (though he managed when I was not there by coming down on his bottom).  Make the decision that is right for you when the time comes -you are doing great and we all benefit from chatting to one another on the forum (its been putting up with me for over three years!!!).  Chat again soon. Hugs  Jules x

Hey Mandy if u can get out and fancy a drink you do it make sure Chris is ok and got help if he needs it. Honestly it will do you both the world of good.  Looking back a hour or twos break from the new norm wil help do u agree Jules. Bet you both worrying if you leave me or I leave you for a while I'm sure it wil benefit you both to just have a little break  alli was on 16 mg of Dex for most of her illness so there's stliil.plenty to go to eliviate the symptoms. You hang in there and stay strong for everyone. I know it's hard but you can do it xx

Hi Deano

Hope you had an enjoyable weekend and I know the company of my children/grandchildren always liftsthe spirits.  As you can imagine boys of 2 and 7 are now building their excitement towards the festive season and I am 'going along for the ride'. Have this year off from cooking the main event (family takes it in turns!) as am spending the day with my daughter and family with my son in law's Mum, step Dad and step brother so plenty of company. My children and families will be here for Boxing Day.  I will be back at work on the B/H Monday.

I think I was somewhat fortunate that during my hubby's illness he did not require hospitalisation and all treatment/appointments were attended as an outpatient (he drove himself!!). His last GP visit was 16.12 last year and we spent Christmas last year with our son (albeit that he was frail and unable to enjoy the meal as had been on a liquid diet for quite some time).  I continued to  be able to work until five days prior to his loss and valued every minute (albeit with deep sadness).  I have to agree that being able to take time out, even for a couple of hours, was an important aspect of my coping mechanism and something hubby was insistent on throughout his three year illness (though it usually came with feelings of guilt that I was perhaps enjoying myself!).  Looking back I do wonder just how I managed but you just do what you think is best and hope its enough.

To be honest still not quite sure how I should be/will be feeling over the next 2/3 weeks but know the emotions may well be topsy turvy and still feel that I am taking things day to day and try not to expect too much of myself, whilst at the same time supporting my children as we move forward and endeavour to make new family memories (taking those in our hearts along with us as we travel through life).

Well, rambled enough and must get myself sorted as am visiting Mum at the care home later this  morning before de-stressing at the gym!!  Sending peaceful thoughts. Jules

P.S.  Hope Mandy's cooker saga has had a happy ending!