Out of my mind with worry part 2

[YourRubyMaker]

for anyone who was on the original thread sorry it’s been a hectic few days . Intensive care was horrific he kept trying to wake up and pull his ventilator out his bp was unreal so they kept having to sedate him ,. Managed to get back onto the ward on Tuesday, weds a blur but yesterday was really positive he got his own wheelchair and managed some light physio,. Today we’ll back to shit really we had planned to leave the ward for the first time and have dinner in the onsite canteen he’s since been sick and his heads swollen,. Waiting to see if he’s gonna get an emergency scan or not , just feel like it’s a rollercoaster and as soon as you think you’re getting somewhere you don’t . Still waiting on biopsy results which won’t be until next week , toddler is so unsettled won’t leave dh alone which is making life really hard as I can’t leave ds but need to go do washing etc , it’s a nightmare

Horrible though that is, I think that is an absolutely normal reaction to what you have been through. And if you are struggling, you can see how the toddler is fearful.

Have you got the Calm app? It's really good, and you can go from a 2 minute 'reset' to whatever you want or need, really.

I’ve just had a coffee and it’s made me have a panic attack 😞 it’s a really horrible feeling , I know it’s normal and it’s probably some kind of ptsd but I just want it to stop , gps are here but it’s just like having more kids to look after , dh is back at work and I feel like everyone just expects me to go back to normal , I’ve contacted the doctor

You will manage the stress of this better in time.

I'm not going to say the stress will go away, 'living low grade' is a special form of hell and it stays stressful, but over time that stress becomes something you'll have as part of life and it will be better to manage. You've been through the worst and your mind protected you and kept you going. Now it's going 'what on earth have I been through'.

I was referred for counselling by one of my child's consultant's. It came through v quickly. I don't injure if it helped, but at least I felt I was doing something to try and help myself.

Well done on contacting the gp. In the mean time breathing exercises, time outside, even in the garden and avoiding caffeine should all help. Is there any way your dh can take a bit more time
off? You’ve all been through so much trauma I don’t think it’s unreasonable to ask. I also think there’s probably some kind of support group for parents with children who have had similar experiences and I imagine they could be a great support to you.

So sorry about this. Maybe be very explicit with grandparents. Could you:
Take the toddler to soft play / the park.
Here's a list for the supermarket.
Put the washing on / fill the dishwasher
Sit with child and read to him / watch TV with him etc while I ......

Anything that someone else could usefully do that eases the pressure on you. I know it's counter intuitive when you're used to coping and supporting your visitors but you now need to support in order to be able to support your children.

And well done for contacting the GP. I recall parents who posted on your first thread who've been in your situation mentioned a number of organisations that may be of help? Perhaps you could contact one of them - or a grandparent could do on your behalf?

Take care of yourself OP

You have been through such a traumatic time, it’s bound to take its toll.

If the GP aren’t going to be helpful, politely ask them to go back home.

Just remember, one step at a time, one day at a time.

nothing is normal in your life at the moment and nor should it be expected in your situation. There is absolutely no prescribed way to react.

big hugs. You will all get through this x

You’ve been through so much OP, definitely sounds like a PTSD response. I hope your doctor can help. One day at a time. Hugs!

It's completely normal. It's been a year for me and I still jump when I hear a noise that sounds like a ventilator or one of the other many machines he was hooked up to.

I still lay awake in bed at night thinking about the cancer coming back and how poor the prognosis would be.

It's a hugely traumatic event, even with a good outcome. It's life changing and you slowly but surely will find your new normal, I promise.

for those who’ve been through this before did you have panic attacks and just feel in a state of panic within your body and did this naturally ease ? Just feel like lightheaded and as if any little thing will make me go into a full attack

You’ve had a hugely traumatic experience, your nervous system will be on high alert. I found when it happened to me it did fade but it does take time. X

For me it took 6 months before I felt a lot better. But, yes, it gradually begins to ease naturally. Just go easy on yourself. Tbh pushing yourself to do stuff like go out at this stage may not help - maybe just a few short walks would be good. It feels like it will never end, I totally get it, but your mind and body does adjust. That’s how humans are.

Yes, it's basically like if a "guy with a gun" had been chasing you, even when the "guy" is gone, it takes time for your body to be able to unwind and relax. Try to accept the feelings of panic as best as you can, not to be afraid of the feelings you're experiencing- your nervous system just needs to desensitize and that WILL happen and you will gradually be able to feel like yourself again. Everything you're feeling is normal.

When DD’s treatment finished we had an end of treatment day where a psychologist spoke to the parents. The thing that stayed with me was the idea of seeing stress/anxiety etc as a glass of water. It’s only when it’s full that it spills over - but the thing that puts it over the top could be anything - just a drop can still have the effect of being overwhelming.

Yes. That part does get better naturally, especially now that you're at home. My son had a very long hospital stay and that was one of the most difficult aspects, it felt like the world was going on but we were all stuck.

Yes I did and sometimes still do. Unfortunately I think it is a natural reaction and one of those things we just need to accept 😥

Yes.

Especially around scan times, and I get nightmares etc.

I find it takes a lot less to tip me over into overwhelmed, like I live with a permanently elevated level of stress (less so when scans are stable, more so when they show growth).

But we have good times too. We've been abroad, done normal things, camping, swimming, school. I've also grumped at her for not tidying up, and she annoys me at times like any child does. Normal stuff.

Life is a bit different, and have made lots of accomodations for that, big and small, but it's just life now. We go all out and enjoy the good times, and kind of go to ground and draw near as a family when things are hard/stressful.

It's hard. Really, really hard. Our privilege is that these sorts of tumours are relatively unlikely to take our children, but they come with the curse that we will have this stress for the rest of our lives. It helps me to remind myself that I'd rather take that curse than the alternative, however difficult the stresses to live with.

Thank you for this

So the doctors prescribed me beta blockers and anti depressants as she said as I’ve suffered with anxiety before it might be useful, I’ve always turned down medication as I’m worried about the side effects but I’ve felt on the edge of panic all day it’s been horrible so I’m hoping they will help , also another month off work and self referral for therapy

Can I ask how long it takes for you to get the results of the standard mri scabs ?

@YourRubyMaker I’m not medical but do consider magnesium glycinate. It’s really good at relaxing your body and aiding sleep, but of course it’s a supplement not a drug. I’ve personally had positive experiences incorporating it into my nighttime routine. x

Good to hear you’ve been prescribed helpful medication. Caffeine will really hit you. Perhaps you could try decaffeinated.

@YourRubyMaker

To try to alleviate the panic attacks, you could try a very brisk walk, walk fast on the spot or go on a treadmill, just raise your heart rate for 10 minutes. You could plunge your face in a sink of very cold water, its something to do with the Vagus nerve and lowers heart rate and breathing. It will help.

Also camomile tea is quite calming. Also make sure to have enough vitamins, C, D & B12 more than the recommended amount.

Hope you feel better soon.

@YourRubyMaker ,
I had flashbacks for some time and used to sometimes drive to the hospital and tell myself we weren’t there now but I was a bit fixated on the place. My dd didn’t eat and I was obsessed with how much she ate after the op. At every scan I sweated buckets although that did stop as time went on. My other dd didn’t like me going anywhere and got quite distressed. My dh and I used to panic if my dd was I’ll - we went to casualty three times one weekend, I did explain why we were like that and they understood. I was quite mad for a while. My older dd was able to talk about her feelings so that helped. We were all traumatised really. We aren’t now many years later. It wIll take time to recover and it is very early days. Take any help on offer. I was already having therapy when my dd was diagnosed so I had somewhere to talk and that helped to process what had happened.
Your little one is quite young so maybe lots and lots of cuddles and allowing them to regress a bit until they get their equilibrium back. This has rocked your world so take it slowly - you all need to recover.

Hi YourRubyMaker. I’ve been thinking of you. It’s no wonder you’re all experiencing the effects of serious trauma. It’s to be expected. Your DS had a serious diagnosis a long and complex emergency op. Plus, you had all the stress of a busy ward.

Take it easy on yourselves. I expect your little one is picking up on your stress. Is it possible to arrange with your GP, hospital or school to refer you to therapy via email, phone or an online consultation. Try to get plenty of rest. Your body and mind need to slowly and safely depressurise.