Every day we lose a bit more of him...

[cremm]

I am new to this, but am hoping sharing my story will help me through this a little bit... My partner is 25yrs old... In 07 he was diagnose with grade 2 astrocytoma, he had surgery and the full course of radiation... It was such a shock to learn that your 20yr old bf had a cancer Of this sort, I remember it all like it was yesterday yet at the same time the things the drs said seem like a blur. After that first surgery Rob lost a little part of himself, his tumor was in the left frontal lobe, and his memory started toget affected along with his mood swings. Everything seemed fine after this, we had a baby girl who is now 3 and the whole experience definately made us both grow up alot quicker then any other 20yr old. Last year in Sept the tumor was back, and now a grade 3, he had surgery again and then started a 6mth course of chemo... He lost a bit of himself again after This one. After the chemo finished we went back for an MRI in march this year - the chemo didn't work, the tumor had grown again and was spread more Rapidly... Another surgery left Rob so out of sorts, he just wasn't the same anymore... They offered him radiation again, but he decided against This, he didn't want to spend weeks being sick hen he could spend that Time Home with us. It's been 4/5mths since the last surgery and I can see Rob slowly deteriorating. It breaks my heart to watch someone so full of Life and so young to barely e able to have a conversation. Our daughter tries to talk to him ad play with him, but he just seems uninterested. He has started gettin headaches, and a little more sleepy... He has days where he will eat and days here he won't and days where he just throws up. Everyone around me tells me how strong I am. But I'm struggling to figure out how I tell our daughter this coming to an end... I feel like its getting close now, but then I'm No doctor, I could be wrong... What other signs do i look out for?

[SILLY]

I don't have any knowledge of this condition .I had never heard of it before . I can only say that I am sorry you and your partner have to go through what must be a frightening ordeal and more so because you have a young daughter . People may think you are strong when you don't feel that way to be encouraging and maybe you are stonger than others would be in the same situation . In a way you have to be for your daughter's sake .You don't want to fall apart so you are holding it all together .I hope you have some family support and the support of friends . I think you will hear from others here who may be able to answer your question .

[little_stitcher]

Hi Cremm, I just wanted to give you a virtual hug. I can't imagine how difficult things are. (((hug))) love Emily

[cremm]

Thankyou both... I do have alot of family and friends to support us all... although every now and then im worried I might sound like a broken record... and now that he is starting to deteriorate and things are only looking like getting worse it is all becoming alot more real. i guess i just hope this can be a bit of an outlet for me, i notice a few people on here going through similar situations and they are constantly posting and getting feedback etc...

[Pamela]

Hello Cremm I am so sorry to hear of the awful struggle you and your family are going through. Life can be so hard at times; your story has moved my heartstrings and brought tears to my eyes. It can be hard to hear people say how strong you are when you can be crumbling inside. You can only take one moment at a time and deal with it with what you have. The following links may help you talk to your little girl about her Daddy: http://kidshealth.org/parent/emotions/feelings/death.html http://www.hospicenet.org/html/talking.html http://www.livestrong.com/article/201246-how-to-tell-a-child-about-the-death-of-a-loved-one/ http://www.babycenter.com/0_how-to-talk-to-your-kindergartner-about-death_67095.bc Prayers of strength and warm hugs of comfort to you, Pamela

[Rita]

Hi Cremm Im terribly sorry and do not know what to say.... I am also new to this disease as my best friend is going throught breast cancer... I cannot imagine how you must be feeling as my emotions as a best friend has also changed... Cancer does not just affect the person with the disease but also everyone around them... Give your daughter a big kiss and be strong for your bf and your daughter.... Rita

[cremm]

Thankyou Pamela, I will have a look at those sites... Am going to have to start preparing her for what's to come sooner rather then later I think . Rita, it's very hard to watch people go through this... My Mum also has breast cancer and is just coming to the end of her chemo, and will then be starting radiation treatment - she is actualy doing very well with it but it does tear at me to see all her beautiful hair gone... Although then I look at how Robs cancer has turned out and think I would much rather mum lose her hair then be fighting a downward battle like rob. Life is extremely unfair sometimes. I'm finding it hard to see how everything could possibly happen for a reason when someone so young has to be struck with an incurable cancer. The other day my daughter was planning her 4th bday party (3 months in advance) and my heart stopped when she was excited saying Daddy would be there.... In Reality he probably won't be.

[Pamela]

Hi Cremm Maybe you could have a special early 4th birthday party so your daughter can celebrate it with her Daddy. I'm sure she would be pleased to remember her Daddy had attended her extra special day, even though he may not be at the real one. Warm (((hugs))), Pamela

[SILLY]

I know a lot of people say things happen for a reason . I don't know about that at all . If I thought about that it would make me question what the reason is ,but I wouldn't want to go there .

[maddie86]

hi there i really feel like i can relate.. my bf was diagnosed at 23 with bowel cancer.. hes had two years of chemo, radio and surgery... then it came back.. hes on chemo for the moment but only til our wedding.. wer getting married in oct.. he wants quality over quantity.. i also know how hard it is being so young.. none of ur friends can relate and unfourtunatly ppl slip away.. im 25 and hes almost 25 now, wer just trying to make the most of what we have left.. if u ever need to chat just message me 🙂 xx

[Hopeful]

I haven't logged on here in months but I happened to log on tonight. I read your post, and I have so many similarities to your story. My husband was diagnosed with a grade 2 astrocytoma which then turned aggressive and 1 year ago he sadly passed away. It was only 18 from his diagnosis to his passing. We also have a 3 year old (who was 2 and 1/2 when his dad passed). I don't really like to give advice as everyone is so different, but I can tell what I did and what worked for us. I was advised for that age group to keep them in the loop, so my son was with us through everything, even staying with us at the hospice. Because the decline for us was quite gradual, (but speed up towards the end) our son got used to the changes in his daddy and never seemed too phased by it. I think he would have been more distraught to be separated from us and to be shipped off to stay with friends or family. It was always hard to balance between trying to have my son and husband spend precious time together, and keeping things quiet and calm for my husband as he suffered headaches, agitation, noise sensitivity etc The line that I found worked best when trying to explain things to my son, was that daddy's body was sick and that soon daddy will die. This means his body will not be here anymore. He wont be able to walk or talk or breath anymore, and we will not be able to see him. I also explained that even though we can't see him, daddy will still love us forever and that we can still love daddy and talk about him and see pictures of him and he will always be your daddy. I do not have a specific religion so I never bought up the heaven thing, and I was also advised against saying daddy will be sleeping forever or he lives in the stars now etc. Apparently that confuses them even more. I also was very open in saying that its makes people sad when someone dies because we all miss him so it is ok to feel sad or cry, but equally it is ok to not feel sad too. Being a toddler with a short attention span you will be amazed at how lightly they take most of this and that slowly as time goes on and they develop, different issues arise as their little brains start to work things out. They are not like adults who seem to grieve very heavily for a period of time. Toddlers seem to do it in shorter bursts here and there. At the moment my son is having a few issues with asking if I am going to leave him, or wanting to play a game where he wants to pretend that we are siblings and our parents have died - weird I know, but apparently this is how they figure it all out and I am just happy he is expressing himself and the topic of death is not taboo. I know exactly what it is like to watch your young husband, fade away into another world and also be a mum to a toddler at the same time. I am not going to lie, it is excruciating. One year on I am miserable and heartbroken but still standing, and my son is healthy and happy. I don't want to put too much info on here about the final stages of brain cancer as some may not want to read about it, but feel free to private message me with any questions. Also look up some of my previous posts as I have written about my situation before and you may find it useful. My heart breaks for you and I have so much I could say to you. But I will leave it there as this is already a novel! Please contact me if you have any questions or would like to chat further. Much love and strength to you and your precious family

[cremm]

Thankyou so much for your reply... I have the understanding that I need to tell er the truth and be honest wih her about what's happening... She has already sensed that something is wrong and is playing the games u mentioned where people die already, and also talks alot about my great grandparents who have passe away. Those games upset me a little bit but as you said that's their way of getting their had around things and dealing with it, and they of course think dry different to us. I don't want to keep her from seeing er Dad but I do want to protect her memory of him a little bit, I would hate for her to be older and say all she remembers of him is him laying in bed sick all the time... It's very horrible thing to go through and I wouldn't wish it upon anyone else in the world... Thankyou again for ur reply, and I will probably message u soon x

[cremm]

I hVe been trying to make the most of things too an have my camera out all the time trying to get family photos... I just can't understand why anyone especially people so young and healthy have to have this horrible disease. Everyday I have friends and his family telling me how strong I am, and now I'm just sick of hearing it - I know they are only trying to be supportive and probably don't know what else to say, but I don't feel strong, I feel like I'm doing what I have to for the people I love and hat kind o person would I be of I didn't? Congratulations on your wedding, I think that's lovely and I hope it's a beautiful day for you both xo

[rarsie]

Hi Hopeful, That was great what you had to say, you are a very strong lady. I will be in contact with you at a later date as yes I am very interested in the late stages regards Sandra