3 aggressive brain tumors.

  • 9 replies
  • 53 subscribers
  • 689 views

Hello, In September my husband had what we thought was a stroke, we went to the hospital and after some confusion as to what hospital we should go to as we live on a border of two County's we went to the smaller one then after 12 hours in a&e and after a ct scan that showed a blockage we we're sent to the bigger hospital to the their stroke unit, my husband was there for 12 hours then realised with medication. We went home and for 4 weeks struggled as he seemed to get worse, I then contacted the stroke association, who were amazing and said we should have had home from hospital community care 48 after leaving hospital, so then they fought over which County would take this on. So then he was getting intensive support, speech, physio, occupational therapy, the lot. But he was getting worse. I pushed for a follow up hospital appointment and a doctors appointment all said it was because treatment started late. So we carried on until December when he fell over as by now his mobility, speech, understanding were all really bad. Again there was the which hospital to go to. Again a ct scan was done, this was a Friday, so no real answers. Doctors kept saying things had changed, and an mri was done, eventually the MDT looked at the results, he was moved to the bigger hospital, one doctor said it was a tumor, they started him on steroids, he was better almost within half hour, I had hope, he was going to get better, they talked about biopsy and chemo etc. Then on Monday I was told it was 3 aggressive tumours, a biopsy would be to dangerous, there was nothing they could do, go home and have a good Christmas! Which we did, he was on 8 steroids a day so he was good, but when we had to reduce them as he was getting aggressive and unpredictable, he started to show all the symptoms he had before. So today I'm spending another day sat with my husband who for what ever reason does not except his diagnosis or rhe tumors are effecting that part of his brain so he tells everybody it's a stroke and as soon as he can talk again properly he will go back to work. I cant talk to him about it all, he has heard it all, and we have a district and palliative nurse weekly so he must understand something. But it's just so hard now, he has lots of visitors but we never talk about him dying, I can see he's deteriorating, I swing from anger of it all to grief, to fear of him dying at home, to wanting him to be at home, to guilt at not being at work, to planning after, to not crying infront of him, keeping family up to date, the list is endless! He is sleeping a lot now in the day, we have all the stuff, hospital bed, commode etc but he insisted on climbing the stairs and sleeping in our bed which is fine, I'm trying to stay positive with him and everyone but it's hard. He's still eating and drinking well, but will just sit in his chair. We try and do family stuff and he tries so hard to engage but will be totally wiped out after. He is 67 years old and I'm 54, we had so much planned for our retirement. We both work full time, it's just so unfair! Family keep saying he seems well, but they don't see what i see, I was told 1/2 months. He's such a fighter, I know now the steroids have been reduced it will get worse, and I've no idea if I can do this! 

  • HI Ellie_B

    a warm welcome to the group. Oh I just want to reach out and give you a huge hug. I hear you. I feel this.

    I'm going to start with one statement - you can do this! I know you can. I was in your position not so long ago and recognise the fears and the emotions. So I speak from experience when I say, you can do this. Trust me.

    You can read the gist of my tale on my profile, but in summary, I supported my late husband (54) throughout his stage 4 brain tumour journey for just over three years. He too tried to deny the situation for a long time. Initially he didn't want to tell anyone at all about his diagnosis but gradually he had to. He was fit and active up until 6 days before he passed. 

    I'm possibly jumping ahead here but has your GP put you in touch with your local hospice? The nurses and doctor from our local hospice were fantastic with us. They started visiting weekly in March 2023 and by the time we reached the end we were surrounded by folk we knew and not strangers. That made a huge difference to me and my grown up kids.

    This group is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it , someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

    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 make sure you take care of your wee self here too. All those emotions you are feeling are perfectly normal. It's the strongest, most resilient among us who recognise and show our emotions rather than bottling them up. This is a gruelling emotional rollercoaster so please take some " me time" to recharge your batteries, even if it is just a walk round the block or ten minutes sitting with a coffee and a book. 

    Sending you a huge virtual hug and lots of positive energy. Stay strong. You've got this.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you, it just seems impossible, the palliative nurse mentioned the hospice, my husband said no why would I need to go there, I want to be at home. I guess as symptoms worsen, we will have to think about that. I just keep thinking how upset he will be. Maybe he will be to confused to know. I hope that's the case.

  • I have just read your page, cryed through most of it but relieved that at last someone understands me. I am truly sorry for your loss, and what you have been through. My husbands tumors are one on the stem, one deep in the middle and one frontal. It effects so much as you know. We are a month into the 2 months they said. He's gone from 8 steroids to 1 gradually obviously. He became very aggressive and would try leaving the house at night time. Now he's calm and sleeps a lot. His eye has started hurting him today. He can't always find the word for something now and will call it something else. I know it will get worse. And just enjoying every day as much as we can 

  • Oh I'm sorry it made you cry. I do understand. Friends and family are great but this community is filled with folk who understand. I've drawn a lot of comfort from here over the past 3 years. 

    The steroids do make people bad tempered and difficult. Been there and got that t-shirt with G. 

    Hospice is a terrifying word to a lot of people but they are a God-send.  They have local community teams who will support you to honour your husband's wishes to be at home. G was admitted briefly last Aug to get his focal seizures stabilised. he hated it! I warned the staff that he would try to escape the minute our back was turned. They thought I was kidding until he had a toddler style temper tantrum on the Sunday afternoon, tried to get out the first exit he found and set the fire alarm off. They listened after that. We can laugh about it now but it was all traumatic at the time.

    At the end of the day you have to do what's best for both of you and it could come down to what you can cope with as much as what's best for him. Please don't be too hard on yourself here. There is no one size fits all solution but community nurses, MacMIllan nurses, Marie Curie nurses and hospice nurses are the "angels" who will guide you through it.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Wee Me is amazing and so are you. It’s a tough and underrated journey. You’re doing everything you can brilliantly and I’m sure everyone there and here supports you. Stay strong xx

  • Hi my heart goes out to you. I lost my husband to this dreadful disease. I don't know where you get the strength from but you do. Stay strong and savour every minute of them being here even when it's tough. This group is so supportive people who are or have walked that awful road. X 

  • Thank you, 

    I know there is a lot of support out there. And coming on here has definitely helped get it off my chest. 

    My biggest problem is that for whatever reason, denial, dementia, tumors, swelling or fear but my husband still thinks he is poorly because of his stroke. He has had loads of visitors and tells them all he will be back to work soon as his speech is better. 

    So most phone calls I make are done in secret, cancelling holiday, sorting insurance, getting a sick note for work, talking to the palliative nurses. Or even talking to family and friends.  

    And I don't know what to expect, what is normal? What should I worry about? 

    Hes eating loads, sleeping loads and apart from getting out of breath, struggling to walk, dragging his foot, a sore eye, confusion, dementia symptoms, some pain in his hand, leg and eye he's ok....how can he be dying? Will it be sudden? 

    Sorry, I went on again. When they sent us home before Christmas saying 1-2 months I expected it too be soon, and just never slept as I was so worried! 

    Now...Thanks to our friends and family we have made memories every week and will continue to do that. Xx 

  • Hi Ellie

    Your post resonates so much with me. Let him believe what he needs to. It's his way of coping and no matter how hard it is on you, let him go on thinking that if it keeps him settled. I was the same with G. The confrontation just isn't worth it.

    I used to make my calls when G would be out for a walk or when he was in the garage pedalling on his bike. Or I would wait till I was out for a walk or running an errand and phone folk then. When he was around in the house, he was paranoid I was talking about him and would listen in on every call I had, including my work related ones. 

    For long enough I would say to folk "he's dying but he's not ill" and that's the best way I could describe the journey. G ate like a horse right to the end. He exercised daily even when he really shouldn't have been allowed out on his own. I couldn't stop him. 

    I wish I had a crystal ball to tell you how it would be. The not knowing and having it hanging over you is horrific. I went to bed every night terrified he would pass beside me in the night. In the end, whatever it was that happened was quick and he knew very little about it. Not sure if I've said in my bio but he went to bed on the Saturday night as normal having had a really good day out with his friend then a family dinner with the kids and I. I wakened on the Sunday morning early, my sixth sense twitching and sensed he was about to be sick. He was and I was seconds too slow with the bucket. Initially I put it down to the ice cream sundae from the day before plus dinner and a few drinks. Then he was sick again..and that was totally out of character. Speech had also deteriorated rapidly overnight. I called the nurses for help and " the machine" took over from there. G had been suffering from a DVT since mid -August so we're not sure if it blew and caused a seizure or a stroke or something but whatever happened had happened in his sleep. On  the Sunday with the help of the community nurses and carers we took care of him then on the Monday he was admitted to the local hospice which was where he wanted to be. By then he was so heavily medicated that he knew very little about it. In the end it was all very peaceful.

    We had been told "a few days maybe a couple of weeks" at the end of February 2023 by the oncologist as he passed us over to palliative care. That couple of weeks was eight months in the end to the very day.

    Sadly there are no guarantees here and everyone is in a unique situation but please know you're not alone.  Make those memories and take each day as it comes. 

    G was all about new experiences and firsts - the ice cream sundae from a famous local ice cream parlour was his last "first" but he was still chasing "firsts" to the end. It's actually comforted me knowing he had such a good day on the Saturday with his pal.

    Sending you love and light and strength. You will get through this, trust me.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you,

    Your husband sounds very strong, although mine is strong and was always very active,  he has now withdrawn from people, he roles his eyes when I say people are visiting, or the nurses are coming round. He's happy to sit at home, curtains are drawn at 5 and he likes to go to bed at 7 to watch TV together, but he's asleep by half past bless him. I am happy to go along with this. But its hard when I'm used to working everyday. I do try and do some work from home but it's difficult. I worry about him if I leave him for too long as he gets confused. 

    Thank you for sharing your experiences, it has really helped. X