Hi
New to this and just trying to find support where I can.
It's been a whirlwind 2 weeks. My daughter went to A&E after she was acting very lethargic , not eating and had spontaneous moments where she would tremble a little.
24hours later she was having an op to drain excess fluid away, that was putting pressure on her brain! She was then blue lighted to addenbrookes. Where a MRI scan revealed she had a brain tumour embedded within her head. They did another emergency op to remove as much as they could. She had breathing difficulties near the end though and they had to staple her up and stop everything to correct her ventilation. They had removed 75% of the tumour Which was positive but not the ideal outcome.
We were then told that they were dealing with an aggressive type of cancer. They went back and did a 2nd operation but with no success this time. It was too risky to attempt as there was more brain blocking their route to the tumour.
We have been told she needs chemo
A shunt has recently been fitted to fix her build up of fluid. So this is a reassuring step forward.
But I realise the worst is yet to come.
I am sadly writing this from my home and not the hospital ward, where I desperately long to be, with my baby girl! But her dad and I are not together and only one of us could stay with her, So since he has her more than I do in the week he had priority.
I am yet to discover when I will be allowed to do a short stay on ward with her. I've tried to be compassionate and understanding towards him. But this is not easy when his OCD and controlling nature won't let him loosen the rein. I understand his anxiety over the whole situation. But I am her mother and I would like him to Consider this. He worries Constantly that somethings going to happen to her. That I might bring infection on to the ward. He needs a break for his own mental health if anything! Hope he soon realises this!
Any words of encouragement will be greatly recoeved xx
Hi and a very warm welcome to the online community
I'm sorry to read how much your daughter has been through just recently and it must be a very difficult time for you.
As you know the online community is divided up into different support groups so I'm going to recommend a couple more that you might be interested in joining. The first is the brain cancer group, which is a great place to ask questions and share experiences around diagnosis and treatment. The second is the carers only group which is a safe and supportive place to discuss your worries and emotions with others who have a loved one dealing with cancer.
If you'd like to join either or both of these groups just click on the links I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
When you feel up to it it would be great if you could pop something about your daughter's diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
