Hi Mandy,

Cannot believe it; have just spent time replying only to  have 'lost it' grr.

It must be difficult trying to have normal days when your husband's illness is causing such emotional and sometimes aggressive symptoms. Whilst my hubby did not have aggressive side effects from his cancer or the limited treatment he was able to have, the lack of emotion towards me (thankfully he was okay with the children/grandkids when they visiited) was a strain.  Having said that I could  not blame him as, like you, knew it was the cancer and just spent so much time wishing I could make it different and the fact that I could not  truly saddened me too.  During the last year I found it helped to let our support worker know both what I was seeing as far as changes in behaviour were concerned as well as how I felt and though it could not change anything it gave them a better insight in how to put questions to my husband when we were at appointments. Of course his pain medication also played a part. I was fortunate that I continued with my small job which gave me a break (yes, I felt guilty and then relieved in equal measure but my hubby did not want me to be tied to the house whilst he was able to manage).

I think I coped better once I knew what the 'forward plan' was but the waiting for results of treatment/scans etc was a stressful time.  Hope there is the best possible outcome from your husband's treatment and the scan shows this.  Many who read your post will relate to the emotional stress that comes with the waiting. The forum gives us that outlet where we can talk freely (both our feelings and ordinary day to day life which is what helps).

Well,my curry is  I'm afraid of a packet mix variety with a few fresh ingredients added ha ha!!  Last night was just a casserole - a warming end to a chilly day.

The gardening is still on hold as its raining so if the bulbs rot it will  be new ones next year hey ho. Am off to visit my Mum mid-morning (she is in a residential care home)  then have my daughter and youngest grandson (2) coming to share lunch.

Well had better stop rambling and get back to the washing up/housework. Be kind to yourself and always remember you are doing your best in a hard situation. Take good care. Jules xx

Hi Mandy. I found when the my wife's treatment came to an end it was a really bad time for us both emotionally. She had radio and chemo together. I was dreading the results of the scan that was going to tell us if it had grown or not. The best thing we were told is that they could stabilise it. On scan day I was ok but going back for the results a week later was terrible. I was filled with both hope and dread excited but nervous can't think of any other day in my life when I felt like that. So I can relate to all the emotions your going through at the moment. I think it's harder for us as carers more than the patients as they seem to accept their fate more readily just try to stay positive and keep focused my heart really does go out to you and anyone else in the position we have or are in with dealing with a loved one who is suffering this horrible disease. You take care and try to stay strong X

Hi Deano,  Treatment has now ended for now, last radiotherapy yesterday and last chemo today.  Trying to reduce the Dex. I reduced it by 1mg today and he had an "episode" as we call it when he gets all shaky and trembly, and has in the past fallen a few times.  Maybe coincidence, surely body can't detect a reduced dose so quick. I'll just have to keep eye on him.  Feels a bit scary no treatment but we'll see what the scan shows when he has it.  I didn't cope all that well yesterday but better today.  I really hope that Sunday goes as well as it can, it must be so hard for you and my heart goes out to you.  But I wish you and your family a lovely day being together, and hope the cooking goes to plan whatever you choose to do.  My cooker did come Thursday but went away again as I didn't realise it had to be hard wired in, and I only had a plug socket lol. So off I went to currys again, and got a plug in cooker.  But haven't a clue when it is coming ....... Soon I hope.  You take care too, and all the best for Sunday x

Hi Jules,  hope you are well.

 It is hard the lack of emotional support.  I do feel so lonely at times.  The cancer has changed him so much and that is so hard.. At first he was much calmer than his normal self, and happier, but that side has gone really.  He has a very short fuse and reacts when it is not necessary.  I don't like to tell him so but I don't think we should all live worrying either.  And it is tough for my ten yr old.  He needs support from his father but the tumour has taken that away really.  The chemo and radiotherapy are at an end for now so we'll have to wait and see.  

You can see from my post to Deano I had cooker issues and am still waiting for it to arrive.  Please I hope by Christmas or no turkey for us!  I hope you had a lovely time with your daughter and grandson the other day.  Take care, Mandy xx

Thanks Mandy I'm sure I'll be ok on Sunday expecting a few tearful moments but I'll be fine. Everyone says I'm made of string stuff sometimes don't feel like it though. I think it takes a few days for the body to start getting used to the dropping of steroids. As the shaking you call episodes we used to call it twerking as the shaking used to start in my Mrs backside. She would have put Miley Cirus to Shane at times. Hopefully the radiotherapy will have done what it's meant to for your husband. And the next scans produce good news for you. I'll be here if you need to talk your worries over about it as we got both good and bad news with scans Hope you get your cooker sorted soon and u can return to your normal cooking. Take care and try not to worry too much Mandy. X

Also he had these episodes pre op and we thought they'd go post op but haven't but did improve for a while.  No one knows what causes them, what did they say to your wife may I ask xx

Feel so alone 

Sorry ice only just got back to you Mandy. I've been at work this evening. The doctors originally said they were mild epileptic fits. My wife had quite severe ones early on in her illness that used to leave her weak down her left side for. Few hours. I had to help her move etc till her feelings came back. One of the Neuro docs witnessed the twerking one day and said they were something else the name escapes me. He said the steroids dexamethasone could be causing them. He halved her dose as she was on 16 Mand within days they slowed right down to her having the odd one every few days which only lasted for a few minutes. She never quite stopped having them but saw massive improvements as her Dex got lowered. As for Sunday it's either roast lamb with all the trimmings or a good old buffet. Kids are suggesting buffet as they can nibble on it all afternoon and will probably end up taking loads home. Try not to worry yourself too much I know from experience it doesn't do yourself any good only makes you bad yourself. Take care X 

Hi Mandy

Such a hard place you find yourself in just now and  having to try and keep some sort of normality for your young lad must be emotionally stressful too.  I hope his school is aware of all that is happening as my daughter found this extra support very useful for my grandson  (he turns 7 tomorrow) when he got upset during school hours.  Of course, our grandson got used to my husband's illness during the three year journey but still has questions now and we keep answers simple but honest. 

We had the help of two support workers attached to my husband's consultant at the hospital and his GP/community nurses in the final three months. During this time his palliative care team closely monitored his medication and suggested changes as and when my husband (or me) became aware of a change of symptoms.  Having these links did not take away the sadness I felt as I watched the man I loved to bits slowly be damaged by his cancer but, along with this forum, it helped me to cope day to day.  As hard as it was for our children (adults) and grandchildren they showed such courage in supporting us and we are still supporting each other. Do you have extended family or good friends that could help to give  you a little space to recharge your batteries?

I wish I had the right words to offer comfort as you go forward after the end of your husband's treatment and do hope that there is some welcome news when the scan results come through.  When my husband had to stop chemo(palliative care) because his body could  not take any more there was no knowing how long it would give us and I now, with hindsight, feel blessed that it offered us two years to make memories and as his consultant politely suggested 'put your  house in order'.  I think during that time I found out the difference between being lonely and being 'alone'. Have you spoken to your GP about any local help there may be for you and the family (our local hospital had a 'drop in' cancer centre where a kind word and a cuppa was a welcome retreat for carers and/or sufferers).

Annoying for you that you still have cooker issues and hope the shop delivers the new choice asap. I did find that the usual 'little' frustrations of day to day life became magnified as I tried to cope with them alongside hubby's illness and recognised that I needed support too.

Use the forum as often as you need. Just writing down those feelings and frustrations means you are sharing and we are happy to listen and support here.  Sending big virtual hug.  Jules x