Hello

HI Husky, welcome on board So sorry to hear about your partner's diagnosis. 

My husband was diagnosed with a grade 4 brain tumour (glioblastoma) in Sept 2020 so I can relate to where you are coming from. I'll be totally honest, I've never felt so useless in my entire life as I have done at points over the past year but this community has been a great source of support and guidance.

Your partner doesn't need to feel shy about reaching out here. There are two groups dedicated to offering support for brain tumours, both for the person and their family - Brain cancer forum - Macmillan Online Community and Glioblastoma multiforme brain tumour - Macmillan Online Community ( if that's applicable) I am the Community Champion for both groups. We'd be delighted to have her or both of you  join when you feels ready to if you think it will help. 

There's also a group you might find a help Carers only forum - Macmillan Online Community. That's the first one I reached out and have found it a great help over the past few months. 

If you need to find more information covering diagnosis and treatments there are pages covering most types of cancers which can be found on our Online Information and Support Section. 

Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available and we also have our Ask an Expert section(please allow two to three working days for replies from our expert team).

Hopefully you'll both find something to offer the support you're looking for.

I've not got any magic words of wisdom to offer but I "get it". This is a rough unrelenting rollercoaster ride for you both but, you know what, you're doing an amazing job and are far stronger than you give yourself credit for.   Please make sure you're taking care of yourself as well as your partner and take time for "me time".  It's not being selfish, its necessary, trust me.

If I can be of any direct help if your partner is too shy to use the groups, feel free to reach out and I'll try to help where I can.

Stay strong. Stay safe.

Sending huge virtual hugs to you both

Wee Me xx

Hello Howard I am also new. My husband was diagnosed with a brain tumour in July. He has refused surgery and suffers seizures every few weeks. Suddenly overnight I am his carer. It’s extremely difficult to cope with watching his health deteriorate. 
I didn’t realise I would have the strength to carry on. He has carers coming to the house 4 times a day. He has a hospital bed in the lounge. I am sleeping on a fold up bed downstairs. He is paralysed on his left arm and leg which they said would happen if he didn’t have surgery. I’m having to wake up in the night to help him on the commode or help change his incontinence pads. It’s not easy because I am getting on in years too. I am praying for your partner and for you to have the strength to help her through this awful illness

Hi stellastella3   

I am so sorry to hear your husband refused the op may I ask why. My partner had the op and is now on radiotherapy and chemotherapy. I too have a lot of broken sleep with that and looking after her horses and chickens I don't seem to have much me time either. I hope it will get better when she finishes her treatment. To be honest I don't know what to say. When people ask me how I am I always say I am fine when really I am not. I am thinking of you 

Yours howard

Hi wee me

Sorry for the delay in answering your great message of hope and help. How is your hubby doing now. Trying to get me time at the moment is really hard to much to do so little time to do it in. Still working out how to use this site but some people to talk to seems to help. Do you find that you say you're fine whenever people ask how you are even if you are not.

Thinking of you howard

Thank you for your kind words. It’s so strange I’ve suddenly become a carer and I have no idea what I am doing!! I think at the moment I am in autopilot I’m doing everything I need to do. I know I need to have a rest or some ‘me time’ I met a friend yesterday for a couple of hours I made sure someone was with him but he got so agitated when I was out I had to come home. Then he had a seizure. It’s so difficult for me to watch, and it must be even worse for him. 

My husband refused the operation because he is getting on in years and was too scared to have the operation. It’s very sad. I’ve been told by a lot of professionals that quite a few people refuse the operations, at the end of the day, we all have to respect his wishes.

it sounds as if you really do have your hands full. I pray that all goes well with your partner.

I noticed that there is a Carers forum on this site so I will be joining that too.

Hi, glad to hear my initial reply was of help.

My other half is doing really well all things considered. He was a marathon runner before his diagnosis but still runs daily (approx 6-10 miles) It his focus/obsession just now but at least its something to focus on. His cognitive skills have slipped - his short term memory is awful, he can barely read and has trouble understanding instructions or keeping up with conversation if the chat is moving too fast. We just need to be patient with him.

Yes, I do find I'm saying "I'm fine" more and more often as its easier than explaining how things really are. I have a really small strong core group of friends who wouldn't let me say "I'm fine". They know me too well!

This group and the  (+) Carers only forum - Macmillan Online Community have been a great source of support to me over the past few months. It's good to be among folk who "get it."

Hang in there. Stay strong.

love n hugs

Wee Me  x

Hi wee me 

Sorry for not answering you earlier I have had a devil of a time getting on here. I know what you mean about talking slower I have to do the same with my better half when she is not sleeping. She tends to find it hard to string words together I just tell her to slow down and take her time.it is worse when she is tired.

Thinking of you all the best husky

Hi Husky

no need to say sorry. I get it!  

I saw from your reply to StellaStella3 that you have your hands full with horse and chickens on top of everything else. I'm bad enough keeping on top of feeding our 4 cats!

I noticed you'd commented about your good lady wife's energy levels post-treatment. Everyone is different and reacts differently but I thought I'd share a little more of our tale by way of some reassurance(I hope).

My other half got really floored by fatigue about 4 weeks into the 6 week treatment cycle and it lasted for about 3 weeks after the treatment ended. He's a fitness freak so would drag himself out for a walk just to get out the house as much as anything else then arrive home exhausted. Gradually his energy levels recovered though and he was able to start running again. A year after his diagnosis he's still running around 50miles a week and has raced in a few half marathons. I have no idea how he is doing it! Running is his focus and he's beyond stubborn (always has been). 

Hopefully your wife's energy levels will pick up in a few weeks and you can get a break from some of your chores.

hang in there. You've got this

love n hugs

Wee Me x

HI StellaStella3, welcome to the online community. So sorry to hear about your husband's diagnosis and that you too have been thrown into this world of being a "carer". 

I totally agree we have to respect their decisions. My husband, like Husky's wife, had the surgery and the 6 weeks of chemo/radiotherapy but he declined all further treatment options, opting for quality of life rather than quantity. I have to respect his decision.

I'd encourage you to visit the Carer's forum. I've found it a great help over the past few months.

You're never alone on here. You're among folk who "get it" in a way that friends and family can't unless they've been through the journey. Feel free to reach out whenever you feel the need. 

Hang in there. Stay strong

love n hugs

Wee Me xx