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It is hard to be postive, becuase to be honest, there is not much to be postive about, and I know I keep trying to be chirpy and cheerful, when inside I am falling apart. My husband and I are in second marriages, my sons are supportive of me, and his children, my step son and step daughter, are obviously scared and frightened for their dad. I have three beautiful step grand children, who are very young, and don't understnad what is happening to their grandad, So it is tough, added to that, my step daughter lives in Cape Town, and is expecting her sencod baby in December, and doesn't know if her dad will be around when the baby arrives, and my step son lives about 40 miles away has two young daughters, and is tearing himself part trying to look after his family, work and see his dad, I found him in tears in my kitchen yesterday, and it is hard to give him comfort when I am in peices myself.
My husband is aware of what is happening, but, he is not my man any more, which is very hard to cope with,
Keep in touch danul, and take care
thank you for reply. my kids are 15months apart and i thought that was hard enough with two, but twins and a three year old???!! you must be a super mum!i know what you mean about the changes breaking your heart, to see someone so close to you go from being your rock to laying in a hospital bed totally clueless to whats going on around them...sometimes wish i could just switch off for a little while, but you cant can you. so many emotions swimming around your head 24-7, and yet passers by seem to not have a care in the world. it is nice to know there are others that understand, but is sad as well, is not something you want people to have to understand, if that makes sense.Trying to keep a normal routine for the kids, is nearly impossible tho, feel really torn about where i should be all the time.Do your kids know what is happening?We have told ours that nanna is poorly and wont get better, my boy asks so many questions, is hard knowing what to tell him. dont wanna pretend everything is ok and then one day have to say she is gone, but dont want them to see her how she is either????wish someone could just tell us what is best but guess you never really kno, not something anyone should be landed with is it.
Hope they can keep your mum comfortable, thinking of you
hi danul was jus reading about ur mum, sounds so like my mum
she was diagnosed last December with a grade 4 glioblastoma after being admitted to hosp for suspected stroke. she too had most removed by operation and then she had the radiotherapy, which i hav to say seemed to improve her a lot. she was then admitted back to hosp a couple of monthes ago on having a siezure and put on anticonvulsents, a further scan showed that she had a lot of fluid around what was left of the tumour and we wer told that the tumour hadnt actually grown so chemo wasunneccessary at the time, she came home and had a real good month regaining most of her speech and some movement in her right side. Then over this last month she has got progressivly worse losing her movement and her speech is sporadic and she is so frustrated as cant say what shes thinking , and some days she dosn't know where she is etc.
We got the latest scan results yesterday and they say that the tumour has now grown again and it is too late to do chemo as it will not have much effect jus make what time she has more miserable and ahe will be ill.
Its so hard to deal with all this, and watching someone who was full of energy and joy and humour turn into someone who can no longer do anything for herself and looks pleadingly at you to help them,and theres sod all i can do.
sorry its just so awful this illness as you well know.
dad is now accepting any outside help and mum has someone in each morn to get her up and they are looking at nite carers so dad can get some sleep, as mum wakes a lot, bless her she sleeps downstairs in a specially provided bed, but needs help to get out of it for the toilet.
they cant give us any time scale so we are taking each day as it comes the hard part now is that she now knows she is not going to get better and how do you help someone deal with that?? Its horrible, i'm so glad this site is available to share experiances with others who know exactly what ur going through.
Get all the help you can and try to be strong, tho i know all to well that is hard and some days I just want to run away from it all, but of course I wont. take care xxx
Hi lizzie, my dad was diagnosed with Glioblastoma in July , he had the operation but was told they only could take 90% of it away. He again refused any further treatment and since then we have watched him deteriorate every day . He also has a hospital bed downstairs, he cant walk and my mum who is 69 is having to do everything for him. I know exactly what you are going through and feel your pain. I feel I lost my dad the day he had the operation and he is very bitter and angry towards the people that love him the most. Life is so cruel, everyday I wake up and wonder what we are going to have to go through today. My mum is doing her best for him but it is taking her toll on her. Dont feel guilty about how you feel as I feel the same. Take Care Jane x
Hi Jane - thanks for your kind message. Things are just going from bad to worse at my end. My husband has not been able to speak for 2 weeks now, so we have had to restort to picture charts - not too successfully thouigh as he gets really confused. He fell last week and dislocated his shoulder, so moving him is a nightmare. Today he had to be catheterised because he couldn't pass urine...........all that plus a few fits thrown in for good measure means I am just exhausted with the whole situation. Like your mum. I feel it is taking its toll on me. Am trying to keep up with my daughter's homework schedule etc, but it is tough. I hope that this really is the beginning of the end for us now, as it would be much kinder that way.
It's nice to hear from someone else in a similar position.......I guess we all feel the same and are all in a similar boat. Hope you all manage to be strong for your dad. XX
I know exactly how you feel as sadly, I lost my husband 6 weeks ago to GBM IV - see my prifle by clicking on my name to see our horrible journey.
Have you tried getting carer's to come in and help you - speak to the GP/District Nurse as my husband couldn't come home until we had a care package in place.
We had Sue Ryder carers during the day - 2 carers 4 times a day and a night carer.
Also, most people talk in Gliosblastoma Why Why Why.... and We Talk Brain Tumours, so try posting there aswell as there are alot of great people who are going through the same.
I remember asking if I was going to die! He replied that the
tumour was an aggressive one and inevitably recurs and that the aim was to delay recurrence of the disease for as long as possible.
I gave my permission and on 24th May a Radical Gross Total Resection taking nine hours was preformed.
Histology has shown a Glioblastoma. Post operatively I required a four hour operation to evacuate a Haematona.
On the 12th July I commenced 6 weeks of combind Radiothearapy and Chemothearapy apart from some side effects this all went very well. I have now completed a 4 week break from treatments and on the 21st september I started a 6 month course of Chemothearapy. In Novemebr I am due to have my first MRI scan which will give Oncology a base line to work fromthen in February 2011 I will have another MRI scan done to see if there is any sign of a regrowth which Im hoping will be negative. I am told that I will then have a regular MRI scan every 3 months.
My name is Steve, I am 50 years old and live in Bristol.
On 17th May 2010 I was due to fly to Spain with my wife to visit family, However, due to the Ash Cloud that was hovering over Europe our flights kept being cancelled and messed up our plans for the week for which I am now truly thankful. In stead we booked a short break to North Devon.
Whilst away I started to feel funny. I wasn’t my usual self, I was becoming forgetful, Tired and had problems with words. I was also getting strange headaches unlike anything I have ever had before. The more the week went on the more confused I became.
We returned home to Bristol on Friday 21st May and on Saturday 22nd my wife being a trained Nurse was becoming concerned and thought I was either suffering a Stroke or a Virus within the Brain or at the very worse a Brain Tumour.
Julie took me to an out of hours dropping centre and I must say that the young female Doctor was on the ball. She ruled out a stroke but wanted me admitted to Hospital straight away.
Julie drove me the seven miles to Frenchay Hospital and on arrival I was admitted to a ward straight away and was given a Full Check-up and underwent a CT Scan.
The scan had shown a left Temporal Parietal Tumour. The following day 23rd May I had an MRI scan.
I don’t recall much of the conversation Julie and I had with the Surgeon as by then my condition had become worse, However, I do remember him telling us that with his permission he needed to operate ASAP!
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