Good afternoon everyone, I sincerely hope that you are all well. I registered with the site and have also used the online chat facility this morning.
After more than three months of specific health issues, I ended up taking my partner to our local A & E department after being concerned as to how ill she was and having called NHS 24. After a lengthy wait she received a CT scan which revealed a brain tumour. She had a CT scan back in July as she was having some issues back then at the tail end of having COVID. They found what was described at the time as a small cyst which they thought was of no real concern. The doctor the emergency department said that she had went back and looked at the previous scan and they literally looked like two different scans. So what was initially a small cyst is now a tumour believed to be 4x4x4cm.
She has since had a second more detailed CT and also an MRI scan. All the details have now been passed to the Neurosurgeons in Edinburgh to decide what the next course of action will be. I believe that the team meet on a Friday, so hoping to hear from them not long after that.
She has been prescribed some steroids that have really helped with the pain and swelling and also some anti seizure tablets.
I can’t lie, at the moment I’m finding it all a bit overwhelming and it still all seems a bit surreal. Trying not to get too upset in front of her as she is worried about me. I myself have started writing about all the what ifs, although not any morbid ones, how I’m going to keep everything ticking over and together etc.
I’m glad such a community exists to share rights and experiences on. I hope you are all well and thank you for taking the time to read this.
Hello, although my partner has a different cancer, I feel the same as you , overwhelmed, by the reality of cancer knocking on our door. since the diagnosis 4 weeks ago after scans etc I have been reading up and trying to find a straight path through treatment options.
My partner has shut down and does not seek any information on his treatment options or what to expect. In fact he just sits around and doses off to sleep as if burying his head in the sand.
all we can do at the moment is be there, take care best wishes
Hi Trazel. Sorry to hear that you and your partner are experiencing this. So far we are all managing to keep our partner thinking positively and awaiting news of the next step and any treatment process.
Hopefully your partner may just be going through a transitional process and may change his point of view soon.
As well as it being a horrid thing for loved ones, friends and relatives to process, it must be ten fold for the sufferer themselves.
You take care too. Kind wishes.
Hi BeardedBoarder
a warm welcome to the online community. So sorry to hear about what you and your partner are going through. It is overwhelming...totally overwhelming.
My husband (then 50) was diagnosed with a stage 4 brain tumour in Sept 2020 and I remember only too well just how emotionally overwhelming those first few weeks and months were. We're the opposite side of Scotland but once the first departmental meeting happened in our case things moved quite quickly and that in itself was also quite scary.
I'm glad to hear you are writing things down. Journaling is my main coping mechanism, but I'd also encourage you to write down all your questions and fears/concerns and take those notes to the next appointment. These initial discussions can be completely overwhelming, and the notes will help to keep you focused and make sure you get the opportunity to ask about what's important to both of you. There's no such thing as a daft question. Can I also caution against consulting Dr Google - he's a scary dude to be avoided. Try to focus on the facts as you have been told them. I get it though...the not knowing is a 1000 times worse than knowing.
This group is a safe and supportive community so please reach out here anytime. As you've already seen, there's always someone about who gets it, someone to listen, someone to hold your hand and offer a virtual hug when its needed. You're not alone here. We're here for you. Personally, I've drawn a lot of support from this group and (+) Carers only forum - Macmillan Online Community
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
Please also take time to take care of yourself here. Don't be too hard on yourself for the emotions you are experiencing - they are all perfectly natural. It takes time to process the situation and there is no right or wrong way to fell here. You need to make sure you keep your own wee batteries charged so you are in the best place to support your partner so take the time to go to the gym or go for a walk or whatever you usually do to look after yourself. It's not selfish. It's essential..trust me.
For now though I'm sending positive vibes, love and light and hugs to both of you. Stay strong. Remember to breathe.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hello Wee Me. Thank you for such a sincere and thorough reply.
I’m sorry to hear of your husbands illness. My partner is the same age as your husband, I myself am a little younger at 44.
I do enjoy journaling, even before now. I have always used it as a means of getting thoughts out of my head in some way. I hadn’t given much thought to using it as a tool for this situation also.
A cousin of my partner has had brain tumour removal twice in his life, once only three months ago. He visited us this evening with some helpful information and words of reassurance.
We are all staying positive about the situation. Positive vibes all round.
Thank you so much for your time.
I really sorry to hear about your partner.
from my experience this isn’t unusual.
I think brain tumours don’t have much in the way of symptoms until later stages. I have regular MRIs for a very specific medical condition which is when they spotted a tumour on my brain stem. I had no symptoms. I think sometimes unless someone is “lucky” and falls into a scan it can be too late by the time anything is noticeable
you can both get a lot of help and support on here
hope all goes ok xx
Hello Charlotte. Thank you for your kind words. How are you at the moment in your journey?
My partner did have some unexplained symptoms which we now know were due to the tumour.
I have found immense support and care from the site so far and will continue to use it and chat with others to share feelings and experiences.
I hope you are well.
P
Hi
I am doing ok, thank you for asking. My mobility has been impacted by treatment but I’m coping with it.
I was advised that brain tumours can affect everything from mobility, memory, cognitive function etc
So far it is only been my mobility that’s affected which meant I can carry on working from home and the extra support from my team has been great. Any support is good support.
Hope you and your partner are doing okay
Hi Charlotte. I’m glad to read that you’re managing to cope with the mobility issues. My partner has had some issues in that respect also. She has started to use walking poles to help and has been advised to oot be out on her own for the foreseeable future.
We now have appointments to go to Edinburgh for both pre-op and procedure. The surgeon called my partner the other day personally to try and out her mind at ease slightly. He has advised that the intention is to try and remove all of the tumour of possible. He hopes that because the tumour has grown so rapidly, that it might well not be so deeply rooted, which might help also.
How are you feeling now yourself and how is your treatment going?
I no exactly how you feel my husband has secondary kidney cancer and all has gone well in the last few scans then he got extremely bad headaches went for an mri last Friday and was told it’s a brain tumour he is being operated on a week tomorrow amazing how quick they have been but also over whelming I also work so worried how to balance the both while he is poorly and worry abt financial things aswell as being scared for him worrying how he is dealing with it and my son who is 20 who lives with us trying not to show my fears to my husband cos he does worry abt me when all he should do is concentrate on is himself
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007