my story, my thoughts

[rachaeljane]

I have an 18 year old with rectal cancer they say stage 4 pallitive care, we found out in january 2011 after 9 months of her complaining of stomach pains not going to the toilet tests saying your constipated, drink this and that take this enima... off to the emergency 3 enimas there and litres of some concoxsion no tests... this will move it, but nope still nothing so we decide to leave with no hope and our bag of sabosatries in hand and the hope that our colonosopy wont be to much longer ( 3 months wait) finally our appointment the doctor had to use a pediactric scope as he found a growth (tumor). We were called into he's office the next day as the biopsy came back cancer, advanced. They say shes had it 2-3 years extemely rare they say 1 in a million this is a 50 plus disease suppose to be some comfort in that, so within a week they do a colostomy, great while they are in doing this procedure they find it has spread spots around her stomach, bowel its taken up her perenium and now we have palitive care and no more talk of surgery as its spread a time frame on her life. Watching my outgoing daughter turn into a young woman who has no energy and pushes her friends away and has become very relient on me like a 3 year old emotionally, she cant bring herself to go anywhere im still working but the guilt of needing to work and needing to be at home with her plays on me what if the doctors are right and she doesnt survive this, have i done the right things. I have 3 other younger kids that struggle to get any time with me as my eldest (sick child) wants and needs so much of my time she lays in her bed all day and night as its most comfy for her so thats where she wants me too next to her but when the others come in she has no tolerance to them when all they want is there mum aswel, I'M TORN. She is so emotional she calls me at work sobbing not knowing why she is so upset but knows she just wants me, she doesnt eat, she wont take any medication other then her pain relief she tells me she wants to give up "i only want her around because shes my friend and ill have no one else to talk to" she is right in the fact she is my best friend but she is also my daughter and i cant even imagine life without her....

[samex]

This is a terrible story. I'm so sorry for you and your daughter. You may find some help for both you and your daughter through the Cancer Council Helpline or perhaps through the Social worker at your hospital? Are there any other family members of friends who may be able to help out with the other kids? They must also be very scared and not really understanding as well. Take care and rememeber that you can alwaysput you thoughts on "paper" here. there is always someone to listen. Samex

[maddie86]

im so sorry to hear that 😞 its awful!! my boyfriend is 23 and just had surgery.. they also put him a colostomy bag and hes very depressed.. he had stage 4 rectal cancer but with radio therapy and chemo it killed it.. have they suggested any of that? never give up hope! he had spots in theblung and liver which they r going to cut out, have u seen other oncologists? like your daughter my boyfriend pushed away his friends, they avoided us like a plague.. i encourage my boyfriend to get up n move about as much as possible, its a struggle though! hang in there 🙂 inbox me if you want to know anything

[craftyone]

I am too very sorry to hear your story. Life can be so very, very hard, I lost a niece at 34 and thought that that was young, but how wrong I was. I agree that you could go and see another oncologist, wouldn't hurt, just don't get false hopes, although there is always hope. I will be thinking of you. craftyone

[craftyone]

Hi Maddie, how is your boyfriend going? Has he adjusted to the bag at all? He will if he can think positively that if he couldn't have a bag, then he probably would be here anymore. It does take time to adjust to them, but it will become second nature in the future - just tell him to keep in touch with his stomal therapist - he does have one, doesn't he? I have had an ileostomy (no colon or rectum) for the last 10 years and find it much better than what I was like before. I was lucky in that way, as I had had my colon removed in my mid-20's and the bag has made life much easier. Hope you are going okay, take care craftyone

[BJS]

I was so sorry to read your story, you must feel the medical profession has let you down badly. My husband has stage 4 Osophageal cancer. He had suffered in the past from reflux, we were never made aware by the doctors that this can lead to cancer of the oesophagus & if we had know this he could have had regular check ups in which case this might have been caught in the early stages. Even when he was having trouble swallowing certain foods & I took him to the doctors they just kept giving him tablets until I'd finally had enough & insisted they investigate by putting a tube down his throat & having a proper look, when this procedure was done they found the cancer. There's so much we don't know & you would think the "experts" would be the ones to keep us informed! Sometimes life really sucks & there's nothing we can do about it! My thoughts & prayers are with you & your daughter. BJS

[maddie86]

hi craftyone! thanks for your thoughts.. he is ok its been three weeks now i think he's just struggling a bit.. we were told it'd only be temporary now its permanent.. but your right.. if it weren't for it he prob wouldn't be here with us.. they removed all his tumor which they weren't sure if they could so that's a bonus! i think it is just a big image thing but i told him and he knows il support him.. at the moment he's sore from the stitches in his bottom, did you find you had a lot of pain when they stitched you up? he'll get them removed next week...

[VLASTA]

I' really sorry for you and all your family that you have to go through it instead of only having fun in her young age but unfortunately the horrible disease has no mercy on any age. The only thing I am concerned is why they aren't giving her some chemo and radiation at least it might bring her to the fight with it, we all know that there are always miracles after all and like to hope for one. I know that teenagers can be very difficult any how but only to get her out of her bad and having to go for a therapy would be a step for her just to go on with life. I know that I'm not telling you anything new but just because I feel so much of your sorrow and helplessness I'd love to bring you to bring her to fight with it, she is sooo young........... My prayers are with you. God bless you. Good luck.

[SILLY]

I am so sorry that your daughter,you and your children are going through this . You must all be experiencing a lot of sadness, fear and confusion. I agree it should have been found sooner. It must be very difficult for your daughter and it's natural that she wants her mum when she is so scared and feeling helpless and it's natural that you are so torn because you have other children and their needs too .I feel for you. The suggestions offered by others to get help with the other children and to seek help from the Cancer Council seem very good ones to me. Do you have family or friends that can help either in practical ways and /or in giving emotional support? I hope you get the support you need.

[Phona]

I am so sorry that your family is going through this. I am 28 and fighting breast cancer. It is very hard for young people to be fighting this horrible disease. I know I am 10 years older than your daughter but if there is any way I can help just let me know. I live in sydney. At such a young age all we want is our mums because you are the ones that make us feel safe. We feel that we are alone and our friends and family don't understand what we are going through so we push them away also it scares us of what we could lose. We don't understand why us and we feel that their is no one who truly understands because everyone that is involved in support for cancer are so much older than us. I have met a two more young people which are also fighting in their early twenties and I am sure they will help to if they can. I can not understand what you are going through as a mum that has a daughter so sick but all I can say is just be her mum. Hold her and even if she pushes away just keep her tight it is what she needs. If I can help in any way let me know. There is support out there and now you need it. My preyers are with your daughter and family.

[Mystery]

Hi Rachaeljane, I just read your blog and wish your daughter all the luck in the world. Where do you live? I live in the UK and was diagnosed with anal cancer before christmas. They didn't classify my tumour but by the time I began treatment the tumour was 10+cm ( I would class that as grade 4) The tumour was fast growing and involved my anus, rectum, perineum and the lymph nodes in my pelvis, which sounds similar to your daughters cancer. I was told that surgery wasn't an option for my type of cancer and that combination chemo and radiotherapy was proved to be successful. The only worry was the size of my tumour and the lymph nodes (which were out of the area of the pelvic radiotherapy.) I was started in combined chemo and radiotherapy within weeks of being diagnosed, but during those first weeks the tumour continued to grow. I was on strong pain killers from the start and still am. Within days of the radiotherapy starting I noticed the tumour on my perineum get smaller and soon disappear, so I felt positive that this treatment would work. I am now 7 weeks post treatment and found out a few days ago that a substantial sized tumour remains. I am clinging on to hope as the oncologist says that radiotherapy can continue to work for up to 3 months following treatment. It will be around that by the time I have surgery to create a stoma, so I'm hoping that the tumour will have reduced enough for them to remove it by surgery. I've been told that due to the vast amount of radiotherapy received, having more, wasn't an option. I wish your daughter well and would have thought that chemo and radiotherapy would come unter the umbrella of paliative care. Although I have a lower than 40% chance of survival, I'm glad that they offered me the treatment they did.

[rachaeljane]

Hi and thanks for all your thoughts, Things had settled down for a few weeks but short lived of cause. My daughter just went through retesting in the last 2 weeks and that itself was hard, so the results today, chemo and radiation didnt help to reduce her cancer but it hasnt spread anywhere else either it just wants to hang around and make life hard for her. They think major surgery will help with the quality of her life but at this point she doesnt want to do it. Her back pain has been so bad that they wanted to admit her to get that under control but she blaintently said NO!!! its so hard sometimes i feel so down today im emotionally exhausted. Does anyone feel like nobody REALLY understands. I cant seem to articulate what im feeling just heavy, lonely,helpless and lost. Rachael

[Mystery]

Hi Rachael, I understand what you and your daughter are going through. I was told 3 weeks ago that my tumour was still there and was booked in for more scans. I had to wait 3 weeks for my MRI which I had Friday, I now have until 8th June to wait for my CT scan and then for results. Due to the long wait for scans, my consultant won't be seeing me until 22nd June. I'm terrified that (knowing how fast the tumour grew before) that the tumour will be too big to be removed by surgery. I am also waiting for a colostomy operation, but the consultant said he wanted to wait for scan results, so that any other surgery could be carried out at the same time. I am very worried that by the end of june, I will be offered palliative care only. I've been trying to prepare my son for the worst, hoping it won't come to that. Mystery x

[rachaeljane]

Im sorry you have to wait so long for everything it is so hard the waiting every step is an emotional experience, which is so exhausting. Are you in any pain? She was so worried this morning about what they would say she didnt want to know anymore bad news. We were told she needs to build her strength as she has lost so much weight and her head needs to be in the right place as its a big job and they will remove everything, she already has the colosomy so that bits done. She just has to decide if she wants it she said today when the surgen was asking her if she wants to go ahead with it, she says "i dont know im still a kid, mum should i get it" this must be so overwhelming for her shes still a teenager. Let me know how you go and good luck

[Mystery]

Hi Rachaeljane, Thanks for your contact. Yes, I know how worrying everything is. Luckily my doctors have been brilliant about pain relief. I am using Fenanyl patches, which only need changing every 3 days together with voltorol and oral morphine, if I need it. I find the lower back and leg pain the most problematic, as it makes it difficult to walk any distance. But if I keep on top of my medication it's ok. What pain relief is your daughter on? Are there any local support goups near to you. Where I live in the UK, there is a centre near to the hospital, which supports those with cancer and their friends and families. The hospices also have day centres where pople can go for that extra support and to meet others who are going through similar problems and receive counselling if they wish to have it. How has your daughter come to terms with her colostomy? Perhaps she should consider further surgery with the help of counselling. She is young and it will allow her to get her life back to some normality. I'm happy for you, and/or your daughter to contact me privately if you wish, since our problems are so similar. Mystery x

[rachaeljane]

Ive talked to my daughter about our conversation and she was wondering if you suffer from any bladder problems as this is a new thing she is experiencing she too is on 3 day patches duragesic i think its called with oxycontin as when needed this has all just been increased as it was no longer helping and they wanted to admit her Monday to get it back in control She has copped realy well with the colostomy i think beause it all happened so fast diagnosed on 17 jan 11 colostomy on the 1 feb 11 and then finding it had spread on that day for her its like the cancer is more to worry about then the bag.talk soon

[Mystery]

Thanks for getting back to me. I've just had my meds changed too. Am on 50mcg patches and also on voltorol, which is just keeping things under control. I do sometimes have problems with my legs giving way, like someone has hit me across the back of my knees with a baseball bat. So that and the incontinence, stops me going out as much as I'd like, and work is out of the question. I did have bladder problems a couple of months ago. Like cystisis. It was really painful to pass urine and at other times I couldn't pass any at all. I thought my kidneys were packing up, but after several doses of antibiotics (for other things) it seems to be much better now. So tell your daughter, it more than likely to be a bladder infection. I've had my MRI but have to wait until the 8th June for CT scan. Then I don't see the consutant or oncologist until 21st and 22nd, which seems such a long time away, as I'm pretty sure the MRI showed something, as they questioned me on how soon I'd see my consultant. I'm fairly sure the tumour is growing as my temperature is up and down, with sweating. I was like that before my chemo and radiotherapy. Anyway, there isn't a lot I can do but wait and hope they'll get me in for the colostomy towards the end of June. Is your daughter still refusing surgery?

[rachaeljane]

i dont know she hasnt said much she wants my aunts oppinion so hopefullly can see her sugeon tomorrow as my aunt wants some questions answered yeah they just upped hers to 50mg patches too. My daughters legs look like they are going to collapse from underneath her they shake and she had to climb up a bunck bed few weeks ago and her legs just wouldnt help her up just shaking. How is your appetite? she only eats 1 meal a day at night and is still loosing weight 52kgs now. Do you have any muccas discharge? She had a test to check for infection but she just wouldnt make the time to get it done. How do you spend your days if your not working, im going to apply for carers payment to stay home more to help her and hope to get more food into her, i think it the right thing to do its just to hard to do everything and she is the one suffering but not having me at my best. Rachael

[Mystery]

It sounds like your daughter could do with some food supplement drinks to get her weight back up. I have been eating but mainly from boredom. Luckily I had a lot of weight to lose before getting sick and only lost a stone and a half during my treatment. I'm only snacking though. if her weight is too low, they won't operate, as it will make recovery more difficult. So maybe try to get lots of high colorie foods into her, like cakes and chocolate.......... Yes, I do have mucous discharge, its a yellowy/green colour sometimes more pinky. I've had swabs taken and they said it was infection, but antibiotics haven't cleared it up, so can only assume it's coming from the tumour. I did think of something yesterday after I replied to you. It's probably best to tell the doctors of her bladder problem as I was told that the bladder was one of the first place the cancer would spread to as its in such close proximity. If nothing else, rule it out... I've found that my glands seem to be swollen a lot lately. The ones in my neck. And they're quite painful. Its odd, but 2 years before I was diagnosed, I spent ime in hospital as my neck swelled up so much I had to have IV antibiotics. It didn't work and toook about 3 months to subside, but doctors never did find out what caused it. Just said it was a compromised immune system. Your daughter is lucky to have you looking out for her. Unfortunately, I live alone. My husband passed away 6 years ago from mouth and throat cancer (never smoked a day in his life). I do have children, one of whom lives close by. But he worries a lot about me, so I hold back on what I tell him. And my daughter has just had a baby, so don't want to cause any more worries for her......