Finding things hard

Hi Sunflower73 

I'm very sorry to read of your husband's diagnosis and all that you are currently going through trying to hold everything together. I have had a different type of cancer so I hope you don't mind me replying to you. I certainly understand that our circle of friends shrink massively and that some people cannot deal with all that is going on and be there for us.

Have you thought about ringing the Macmillan helpline. They may be able to signpost you to services that may help you. They may be able to give you benefit/financial contacts so that you may not need to work as many hours. This is the link to contact 

https://www.macmillan.org.uk/about-us/contact-us

It may also be worth having a look at these other forums, where you can get support from others in similar situations. These are the links below

 Carers only forum 

 Family and friends forum 

I hope you feel better for posting. Please think about the helpline to get some support. Best regards.

A x

Hi Sunflower73

i wish I lived somewhere closer to you and could give you a real hug. Sending you a big virtual hug. I can completely relate to what you have written. I went thru this with my husband for close to 2 years. Only difference being I was blessed with caring friends and neighbours who were always there to give a hug or have a cup of coffee with me. If you ever want to speak to someone you can message me. I am hear to listen. 
Take care of yourself 

Hi I can totally 100% relate to all of this. I'm so sorry you're going through it too.  It's beyond hard to bear and deal with. I have no advice as I'm struggling to make sense of everything myself.  It's so so true when people say make the most of things,make memories etc but like you I'm exhausted trying to keep everything going, my husband has also lost all interest in everything, he constantly refuses to go to things I've organised and if he does he's like jekyll & hyde. I think he's suffering from depression but refuses to see the Dr. Like you I feel so very alone, anyone not going through it really can't understand the sadness, anger, frustration on a daily basis. I feel so bad when I lose my temper with him, I'm currently sat in the car after storming out.  He's taken the dog for a walk this morning (in the pouring rain!) He got back and just let the dog off his lead sopping wet and let him run around the house, wiping himself on the stairs, sofa and the bed.  When I went mad he just said I didn't think he was wet! It sounds like a small thing but it's just one of many situations.  

Like you I try and get him to spend more time with the kids but he's just not bothered. Our daughter (my step daughter) is 23 and came over this weekend to see us as she's going abroad for 6 months so we won't see her for a while, my husband was so disengaged and refused to come for lunch, I insisted he did but he was so off and grumpy. I know it's really hard for him but I feel like he's missed a real opportunity to spend the day with her.  

As I said I have no advice as such as I'm just taking it minute by minute.  I'll go home shortly and just get on with cleaning the house and working. 

You're not alone though,  I absolutely relate to everything! I'm the same as work,  people ask how's your husband and I just say doing ok! 

Sending lots of love and hugs xxx

I really feel for you Sunflower73. I find being shut out difficult, too. Grumpy moods. You are carrying so much. It's hard to keep trying to be the bigger person. 

Hi Sunflower,

Every word hit home, I know it must have felt muddled and confused to write, but that's just how it is isn't it. You couldn't have put it better.

I am in a similar position, now in the 14th month post-diagnosis and as summer stretches before us and I have made and unmade plans time and again I can truly understand you when you say this is not like in the movies. I am currently "the enemy". Apparently, I am just waiting for her to die while she fights to live. This morning I was even "her assassin" because I said I didn't think it was a good idea for us to move home to live by the coast. She wrote me a text on Whatsapp with her measurements so that I could fit her for a coffin, and then blocked me. 

I understand this must be so hard for her, she keeps blanking out and forgetting things and that must be so scary. I am the only one here, the medical staff have drawn away and I am alone looking after her children and trying to keep everything going. 

I really wish i could give you some advice, but just as your post made me feel a little less alone I hope at least this does the same for you. Hang in there.

Oh gosh Sunflower I think your words have really resonated with all of us in our little community.

Yes, to the dementia. That's always how I used to explain how she was to people. Like her brain had suddenly fogged up and she just couldn't process things. Like she's suddenly 90 years old.

Yes, to the friends who stand out at times like this. In fairness I'm not sure how I would have dealt with a friend in my situation before all this. Though I do see now that some took a backward step whilst others leant in and still do to support me. 

Yes, to try to making memories being so difficult. We did our best but once we knew the tumour was coming back the woman I married was disappearing fast so it became just about making her comfortable. Camping, though I love it, could be quite stressful before she was ill so well done you for giving it a go.

And yes to scanxiety though I have to be honest and say I knew her last scan would be bad news and it was. And in some ways that helped as treatment was completely withdrawn and we could just concentrate on palliative care with the hospice team.

Lastly, from someone who is on the other side of things I've now met lots of people who have been through this or similar.  It is not uncommon to hear of people who have been diagnosed with PTSD. I don't say this to scare you but to just illustrate how awful this all is and the need for you to look after yourself in any way you can. 

Sending hugs and really hoping the scan isn't bad news,

Chris 

Hi Sunflower73

whatever you have said is completely true with each and everyone of us. When I read your post I brought so many memories back. Especially people telling you to create happy memories and I felt like shouting at them that each and every minute keeping my family going with basics itself is such a difficult task. Let alone creating happy memories. 
But now I am on the other side for the last 4 months and I must tell you that I don’t remember of any of these things. Only thing i know is I will never get to meet him again. He is not there anymore. 
so hang in there. Keep repeating and reiterating to yourself that it’s not your husband who is saying or doing all this. It’s the tumour. They are not the same person and they are not aware of what they are doing. 

Jyo, I guess it all feels like a blur to you right now?

Having one of those days too. She was ordering me around and the kids, telling all to clean up, giving meaningless chores to do, getting angry with me and the kids. Told my son he can go away for a week and right now I cant find enough time in the day to put in an hours work which I have to do. I looked at her and told myself its the tumor and it did certainly help... a little.

Now dealing with diabetes meds (due to spike in blood sugar) and urinary tract infection so the fun continues... I have loads of reminders on my phone for food, meds, shower, etc... cant keep track.

Then when the frustration gets too much... driving in the car, doing something, the tears start, and the pain in the chest remains.

"Making memories" is such a cliche... seems impossible to do due to how tired she is and the "lack of interest" in things... Sunflower... its "normal"... horrific but this is "normal" for this horrible process. 

Allow yourself to feel angry and dont chastise yourself... you doing the best you can.... have a "lovely" day and "hope you have a good weekend" takes on new meanings right?

Hi we also now  also have steroid induced diabetes to deal with.  it makes me sad to read about what people are having to deal with.  The emotional pain is almost unbearable isn't it.  I also go out in the car and park up at the local park and watch the ducks! Sounds odd but it does help me get some breathing space even if it's just for 10 minutes.  Sending hugs to you and your family.  I 100% agree that people mean well when they say make memories, cherish every moment but it's bloody exhausting! My husbands memory is shocking so I'm not sure he actually remembers some of the stuff we do! Xx 

Oh bless you all and thank you so much for taking the time to respond to me. It certainly helps to know I am not alone and the feelings I have are, sadly, ones so familiar to you all. Tomorrow is our results day so feeling anxious today and quite sick, but I did get D to come along to our sons Year 6 Leavers Service this afternoon and although he was quite 'indifferent', I think I am the only one to really see this and our boy was chuffed to see him. 

I am interested to see about the steroid induced diabetes as we are dealing with this too. Although he was diagnosed with diabetes and high bool pressure just before the GMB ... I am not too sure if any of it was connected. He now has a libra fitted and is totally off steroids so his sugars are not quite as high and we have had a few hypos too. We are also having to monitor blood pressure twice a day. This is exactly what place we were in this time last year, just weeks before the diagnosis. 

I think my problem is definitely worrying, noticing every small thing and making connections that may (or may not!) be there. D has told me he doesn't worry about it and does not think about it so is not worried about tomorrows results. 

I am so sorry you are all going through this too. I keep saying that I am going to try and get some support but I am definitely just soldiering on so absolutely get the PTSD comment Chris ... I worry about how I may end up after this and will I be able to look after my boys, without D by my side. 

Our latest issue here is our son keeps charging up his electric scooter in the conservatory and not on the outside plug. This seems to really upset D and he absolutely lost it the other night, really shouting at our boy and saying none of us listen to him anymore ... I initially thought he was joking as it was so extreme, our boys were getting upset and panicking. I have gently tried to tell our boy to do it outside as it upsets dad ... but 11 year old boys are sometimes a law unto themselves! 

Thank you so much everyone ... just being there and listening/reading is a huge help ... I really do appreciate it. 

Lots of love to you all and a cwtch from Wales x