I need some support please. I am so stressed about everything that I have been hitting my arm. First was slaps, now I hit it, because I am so frustrated and angry that it has to come out. I need help please
Having a reflective weekend as you may imagine. It is hard not to think of this time last year but in amongst the sadness there is a little light as the good memories help enormously. Life is different but can be do-able and I know hubby would want us to move forward with some hope. Am lucky to have had so long together and our two children are testament to the strength we have as a family. We are still mutually supportive and as a Mum I feel their pain, as well as my own, today but we are coping.
My son in law decided to take us for an indian meal last night which was not pre-planned but saved me cooking!! So proud of my family - oops another reason to well up. Off to make a coffee and get back to the reality of housework!!
Hope you have had a peaceful New Year/Weekend. Good to have others to chat with. Take care. Jules x
Not had a good week. Chris came home yesterday but he's not well. The IV diuretics didn't really help so they did an Echo and discovered he has Hypertrophic Obstructive Cardiomyopathy where the left ventricle is thickened and stiff and doesn't do its job properly. It is also genetic... He had a cardiac MRI yesterday and we'll get the results next week. He was in excruciating agony from sciatic leg pain early this morning. His mobility is even worse and his chest is wheezing, he does have asthma. He says he will not go back into hospital. He's still on water tabs, and cardiac meds too now. He has hardly passed urine today, I think he is filling up with fluid again. I weighed him this morning and will again tomorrow. The ward he was on was okay but they messed up his chemo drugs, and I don't think they liked me being a nurse and knowing stuff. His consultant is fine with me, but I get the feeling that I'm not their favourite relative. Tough.
I shall see how he is tomorrow. To say I am stressed is an understatement. I feel dreadful, totally overwhelmed in my dark moments. It's been a very hard week and I fear is going to get a lot worse.
I hope you are both well and enjoying our lovely weather .... Xx
So sorry to hear all you and Chris are going through. My heart goes out to you both. I honestly don't have words to say that could possibly make you feel any better Mandy. Just know I'm thinking about you both as I am sure Jules will be too. It's a horrible time and journey to travel and nothing can prepare you for it. Just keep hanging in there and stay as strong as u can. And remember if you need to cry then cry don't keep it all bottled up it does you no good in the long run. If you want a rant or to sound off just do that also even on here if it helps. As for the hospital you are chris primary career so you have every right to make sure things are ok and being done correctly and being a nurse you have that extra knowledge to know if things are quite not right so don't be scared of speaking up. Take care Mandy and I honestly hope things turn a corner for you all xx
Not the start to 2016 that you would have wanted I know and my thoughts are with you both. How is Chris today and I do hope he can stay out of hospital if it's possible. It will be a tough call but you will know in your heart (as well as with your nursing knowledge) where he can best be treated. It was different in our case as hubby did not require hospital in patient care throughout his own journey and in the last vital days chose himself to remain at home where he felt more rested.
Nothing I can say will change how your journey continues but along with Deano I am here to listen any time you need to let of steam or even just have 'cancer free chat' (my forum buddies kept me sane at times I can tell you!). How is Will and your daughter coping just now? Please cry if you need the release and always remember you can only do your best in such hard circumstances - we are only human.
Chris did go back into hospital on Tuesday and is now in the cardiac unit. Still wheezy and carrying fluid but less I think. He also has abdominal ascites too which is causing his breathing a problem as his belly is full of fluid. I think we may have to accept this is how it is, but I'm not sure Chris will be able to. It's not a good way to live. His heart was battling along at 150 tonight. But they did have plans to send him home tomorrow, not sure now. Will broke his little heart tonight saying his dad won't see him grow up or get married. It was awful. Hard to know what to say.
Whilst it is not what anyone wanted, having Chris under expert care in the cardiac unit is the best it can be at the moment. Is so hard for you all as a family and Will's conversation was pretty similar to how my 7 yr old grandson saw things and still does at times(though just lately he reckons I should find someone else to help with the housework!!) and we talk about my husband a great deal when he wants to.. If there is any up side to this it means he can express himself openly to you and though I know it's heartbreaking both to watch Chris struggling and dealing with your own emotions as well as Wills, (no doubt shedding tears for you all along the way), it is better than bottling them up inside. I would imagine it is even harder for you having nursing experience as there is no hiding pkace when it comes to how things are progressing but, despite what you may think, you are doing a grand job and keep taking support from those around you and us on the forum. The only answers we ever had for our children and grandson (youngest was only just over a year so only recognises his grandad in photos because that is how we keep him with us for them) was that their Dad, Grandad, has been so lucky to see them born and grow and that in the future they would always carry him in their hearts though just now this is probably no consolation because watching the illness progress is the hardest thing in the world.
Coping day to day and having lots of cuddles with Will as you share his sadness at how the cancer is affecting you all will help you all just a little but come and rant here, we can listen and sadly understand the desparation you feel especially as you would rather have Chris at home right now rather than the not knowing when.
Be kind to yourself and, it is not enough to make a difference, but sending big hugs to you all. Jules xx
