My name is Diane, I’m 56 and married to my lovely husband Robert. We have 3 children between us and we are proud of all three. I have a son who is 30 and has Autism with severe learning difficulties. I also have 2 beautiful step children Laura 33 and David 30 also. They have lovely spouses and I am so thankful for their support.
My cancer journey actually began with misdiagnosed with Labrynthitis during lockdown one and over the phone.
Mother’s Day March 14th 2021 I had a brain haemorrhage and had CT and MRI scans. When up on the stroke ward the consultant came to my bedside and asked if anyone had explained the MRI. When I said she proceeded to say “I’m so sorry” (SORRY!?) there was something on the scan and we need “to refer you to the NeuroOncologist” ( now you’re frightening me using oncology!) “you’ll have some very difficult decisions to make! And that was the start of this horrendous journey.
I was discharged home to watch and wait but things got worse and I developed what they thought were focal seizures. So surgery to remove the Ependymoma from my fourth ventricle was done in 16th June. It was too dangerous to remove all and I have been left with abducan’s palsy, part of the cerebellum was removed so I have balance issues.
I feel totally traumatised and it has triggered past traumas of being different and excluded (for reason unknown). I’m feel I’m struggling to be heard now with the professionals. My consultant is nice but he has only just explained about the cerebellum.
my space with the MacMillan counsellor was invaluable but unfortunately my sessions started just as my mother died. The 6 sessions went quickly and I cried through every session. So
So my final session was Saturday and I was so distressed at the thought of that safe space ending. I keep having visions of the space but empty and I cry.
I have no idea of how to put myself together again! I don’t even know who to rebuild myself in to.
Does anyone else feel traumatised by the counselling. It’s like I’ve opened a can of worms and can’t get them back into the tin.
if you have read all of this I thank you.
Diane
Hi Diane
oh I just want to give you a huge hug!
I'm not a medical professional and have never yet felt brave enough to try counselling. I can feel your frustration with the medical team though . I have become quite disillusioned with my husband's oncology team but a call to my GP helped to put my mind at ease and they offered to act as a gatekeeper for me. Have you tried speaking to your GP? If not it might be worth a call.
I'm sorry to hear that the counselling has "opened a can of worms" but can I suggest you call the Macmillan Support Services on 0808 808 00 00 (- most services are open 8am to 8pm, 7 days a week ) again and explain how you have been left feeling. I'm sure they will be more than happy to offer further support in the circumstances.
This group is also a safe and supportive place to reach out through. There's always someone around to listen, someone who gets it, someone to hold your hand and offer that virtual hug when it needed.
I wish I could do more to help. Please be assured that you are not alone and if there's anything I can do to help you get those worms back in the tin, please reach out.
Sending you a huge virtual hug for now.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
