Glioblastoma multiforme (GBM) is a type of brain tumour. If you're suffering from...
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Hi been looking on here for a while but not been brave enough to post .
My husband last August was diagnosed with a low grade glioma after experiencing some plastic like smells. We were told that this was focal epilepsy caused by the tumor and he was consequently put on medication and we were scheduled for a further scan 3 moths later . 3 months came and the scan sadly showed that it wasn't as they originally thought a slow growing tumor and actually was growing rapidly . We were booked to see the neurosurgeon in Derriford and he said the best bet was to have an awake craniotomy to try and remove as much as they could and they could also see what type of tumor we were then dealing with .after several tests scans mind mapping the operation was performed on the 18 th December. In the end they didn't do the awake bit as my husband had a bleed so they performed the operation in the safest way they could . He did really well after the surgery and amazed us all with how he coped with everything . On Christmas Eve we were givin the devastating news that the tumor was in fact a grade 3 Anaplastic astrocytoma . ( funny how quickly you get use to using all these medical terminology in your every day lives isn't it ?) in the mean time news years day found us at Treliske as on top of everything he had a dvt from the operation so he is now on Fragmin for the next 6 months but that seems to be sorting that out .
Anyway in January we met with our oncologist and it was decided that 6 weeks of radiotherapy was the Action plan . Again he has dealt and coped so well with the treatment was tired and a bit nauseous and apart from the emotional stuff again really dealt with everything they threw at him . We finished the radiotherapy on the 18 th March and they said that the pinnacle is generally about 2 weeks later. He was definitely more tired and generally dozed in the afternoon and seemed a lot more emotional understandably . Anyway we saw our Oncologist this week just to see how things are going and he did mention that the last 2 weeks he has been experiencing some blurry vision and bumping into things mainly on his left side the tumor is on his right . She said it was probably still the radiotherapy still working and not to be alarmed but obviously they can't scan until June as there will still be bruising swelling etc. so wouldn't. Be able to really tell what's happening . The same with having an eye test as things could change . I suppose I just wondered if anyone else has experienced anything like this . It has really unnerved my husband and totally wobbled me as he sometimes literally can't see things that are right in front of him . I'm sure it's what she said but just heartbreaking to see my very on the ball husband getting so upset and frustrated and scared. : (
I have been trying to be positive and we talk about everything hopes fears worries but I just don't know what to do I feel so tired and angry that this has happened to us then selfish as there are a lot of people who aren't as lucky as us and can't have treatments operations etc. it's been a long 9 months and our lives have totally changed . Sorry feeling a bit sorry for myself need to give myself a good talking too that generally does the trick . Anyway thanks for letting me share and vent any advice welcome
I've just seen your post and wanted to reply. You will see my experience on my profile-
Gosh you have been through a lot over the last few months and it's great that you have come on here now that you feel you can. It's a great place to get support/reassurAnce or to have a rant- as I have found over the past few years!
I can't say that my husband has experienced the exact symptoms that your husband is currently experiencing but I can tell you that even now he still suffers from dizziness and other odd symptoms that cause him a lot of anxiety until he tells his oncologist/neurologist. More often than not he receives that explanation also.
Thankfully to date his tumour had remained stable. But there have been so many occasions when we have worried something was happening due to various symptoms which he has experienced!
So I suppose to sum up you are always right to speak to one of your husbands team when these symptoms occur (because you would never know what is going on) but it is normal for symptoms to happen as we have found that are a result of the interference that has gone on in your husbands brain.
I hope this helps there will probably be someone on here who has more specific experience of the symptoms you have described but I just wanted to say hello and let you know you are not alone. It's difficult and frightening and often frustrating this caring role- so feel free to get in touch any time!! Even just to let your thoughts out!
I really hope that things settle for you and your husband!
You have every right to feel sorry for yourself and your husband. your life has been tipped upside down and we sometimes get the speed wobbles.
Yes, my husband lost his left side field vision (left hemianopia) after the surgery and his general sight was further affected by the radium/chemo.While for him this was mostly permanent some have posted here where their sight improved as the swelling and other effects subsided so there is hope. Toms tumour was Right Temporal lobe.
So sorry that you are facing this tough condition but do enjoy each day to the fullest as you will be well aware time is precious. Grade 3 does have much better survival times than grade 4 so that is a positive thing for you to grasp onto. I wish you both the very best and hope the eyesight improves. Thoughts Jan.
Hi there I have just read your post and got great comfort from knowing your husband has clear scans 3 years on. My 43 year old daughter had surgery last June for the same type of tumour followed by radiotherapy and is 3 sessions into her PCv. She is doing well and her first scan was good. She has three boys and is a single parent so her dad and I have been her main carers. It has been a tough year.
Wishing you and your husband well
I hope that you and your husband are doing well. I too was diagnosed with a grade 3 anaplastic astrocytoma in the spring of 2014. My tumor was also in the right side I had a partial removal of the tumor the rest was too deep to remove without causing damage. After surgery I had radiation and chemotherapy. For me I stayed stable until 6 moths later the tumor started growing and we were taken off the chemotherapy and put on a targeted chemo. The insurance company denied that chemo saying it was unproven treatment. So that left us with the option to chase down clinical trials. We were approved to join a trail and after 4 months of treatment we were so excited to learn the tumor had shrunk 14%. 2 months later a scan revealed 2 new tumors had grown in the back of my brain. The new tumors are far enough from the first radation that they decided to do another round of radiation. This process is long but my wife and son are my rocks and why I keep getting back up to fight. It's ok to get down but if you stay there too long it will be hard to get out of.
Pay attention to your husbands symptoms I knew that something was wrong when I started getting headaches at the back of my brain and then poof. Keep enjoying life and making memories. Life is too short.
Hi all me again , firstly so sorry for not replying to you all but thank you so much for taking the time to reply and share your stories and experiences. Things sadly haven't been great hence me not coming on here. Gary's vision and balance really went down hill and he ended up being taken into hospital with stroke like symptoms . He was in hospital for about a month and they did tests and cat scans and an MRI scan which came back inconclusive ! What they told us is that there was a lot of swelling so put him on 16 mg of steroids but they couldn't tell us if the tumour was growing or that the radiotherapy was still working and shrinking the tumour and causing chemicals to be released which were causing these acute symptoms. Gary went from being able to do everything to literally overnight loosing his strength and movement in his left side. He needs help with all his personal care , can not walk far unaided having to use a tripod stick . Our house has become full of bars and equipment which I know is there to help him but still a shock as this has happened in such a short period of time. The MRI went to derriford for the multidisciplinary team to discuss and again it came back as inconclusive and we now have to wait until August 19 th to have another MRI scan to hopefully tell us what next . Am in unchartered territory at the moment as we have of always worked . I have resigned from my job as Gary can't be left on his own and it looks like he might be medically retired from his job . I want to tell the world to rewind and wipe this last year out and go back to normality . Trying to get on and cope and just be thankful that Gary is here but I'm afraid of what next so here I am again back in the fold feeling a bit like I'm dipping my toe again for some advice company and support ( hope that's ok and wish I could get more involved on here but I suppose it makes it all a bit too real and perhaps there's an element of denial with everything that's happening ) feeling alone and just there you go get on with it . Never felt so low and we are the glass full type of people but just can't see beyond were we are now . Xxx
Sorry to read how low you are but totally understandable. Just want to let you know that there is additional support if you are on Facebook. I got tremendous support from the Brain Tumour Carers page. It's a closed group but you feel more part of a community of people going through the same journey. brain Tumour Support braintrust is another helpful FB page which would give support for your husband.
Thanks Angela , I'll go and check it out . I have recently got in touch with our local brain tumour trust support worker so she has just sent me some info that I need to have a look through . We have great friends who are so supportive and we love them dearly but it's almost like you don't want to tell them exactly what's happening as you don't want to burden them all . Almost feel guilty for not always being positive . Will definitely check them out so thank you for your reply xx
Hi all haven't been on this site much but occasionally poppedi in when life was feeling a bit tuff . Anyway sadly my Hubble passed away on the 15 th December . To say this last year and a half have been pants is an understatement and I really wouldn't wish our experience on anyone . It is lovely when I hear the stories about different support experienced by different people but sadly our experience hasn't been so positive And at this moment in time I just feel angry and let down . I know that's not going to change what happened to Gary but even at the end the way in which Gary died seemed like a comedy of errors and I would have thought after he died which was in Hospital someone would have spoken with us but nothing ? The nurses were very kind but no doctor or anyone came to see us , when Gary was fighting for his breath and my daughter ran out to get help one of the ward sisters came in and said well I don't know he's not my patient . I honestly think that they were as shocked as we were and when we were hustled away the doctor didn't really know what to tell us I wish I had said I was staying with Gary as we knew what was happening but in the time it took him to basically find somewhere to take us and then say I don't know really what to tell you they ran back to get us but we were too late And Gary died on his own . It was dreadful and I'm cross and sad and all those things that I know am normal and I suppose by typing this in my own way I am saying how mad I am . In the end Gary developed clots on his lungs after having to come of fragmin which he had been on for nearly a year after developing a partial clot after his craniotomy last December 2015 so he actually died with in the year . He was so brave and endured radiotherapy being prodded and poked about a stroke in June and then chemo . I know in the big scheme of things it was quick which was a blessing were as the tumour had grown and it wasn't looking good but we weren't ready to say goodbye and wasn't expecting to . Anyway I'm sorry to vent the funeral is this week due to Christmas he will miss our eldest 21 st the following week her graduation as our youngest daughter as well also the rest of their lives and for that I'm sad . I really have lost my best friend and confident . Anyway to al,of you I really hope life is kinder and that they one day finally find a cure for this shitty disease . Wishing you a peaceful New year x
I havent been on here in a while but wanted to respond when I saw your post!!
I am so very sorry to hear your husband has passed away!! And to hear of the experience you had.
I truly hope there is some support nearby for you now!! Its bad enough to see your loved one suffering but to feel that those professionals in whom we trust to take care of them were not there for him when u needed them most must have been dreadful for u and your family.
Sending you a great big hug!!
Hey, this is very sad. I am truly sorry for what you're suffering. Missing loved ones is the pain that can never be felt by some other folk.
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