August 2020
Tony I am so glad you made it through your personal battle with bowel cancer. I am afraid that today I am caught in a bad space. I have my third round of chemo tomorrow and for 2 days I will be attached to my Siamese twin, Cleopatra ( my chemo infuser ). At least the chemo department manages to accessorise my little bum bag with my chic sense of fashion. Well not really but I like to pretend they do. Last time I had a shoulder bag of navy blue with lil anchors on it. Right now I am going through some nasty side effects and I am feeling sorry for myself, I have tried so hard to be brave for everyone else I sort of forgot to think about myself, Now I am not going to put on a brave face for other people, they get to see how i really feel. Today I am tired, grumpy, in pain and the last thing on my mind right now is laughing so to hell with it, now they get me warts and all. I figure I have spent my life being good, doing the right thing, making sure no one has to worry about me but now it's about time I turned this around. Sometimes I am going to feel like do do and when I do I can't be bothered trying to be 'brave' for everyone else. Sod it. So tomorrow I will go to hospital, be quiet, not crack any jokes and just get through. Fair Enough?????
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July 2020
Hey lucky Lisa. My name is Suz123 and I have the same diagnosis as you and yesterday I started chemo. I now have an infusion port under my right collar bone which sits under my skin where they connect my chemo line to and it is much better than the dreaded canula's. They even give you a little numbing patch to put on it 45 minutes before your appointment so it doesn't hurt to have the needle slipping in. The little bottle of chemo sits in a bag, either a bum bag or a shoulder bag which comes in a range of lovely colours. I wear mine for 2 days and am currently having 2 main meds through it. So far I am being extremely lucky and have no side effects from the chemo. Now to George, my really badly behaved stoma. Yes I have named him and yes it's a him. I won't say why it's a him cos it might put people offside but they are very good reasons. First of all you will learn to have a great sense of humour because if you don't laugh you will end up crying. Nursing staff are wonderful and very helpful when you first get your bag. At first I was horrified and apologised to nursing staff all the time for something I have no control over. It is active when you don't want it to be, like when it is time to change the bag, the bags leak, you get into some wonderful messes and you can have some embarrassing situations happen. Sweetie this happens to everyone with a stoma and the sooner you can laugh about it the better it will be. My stoma was being changed and I swear to you my stoma quacked just like a duck. I burst into laughter and the more I laughed the more it quacked, the darling thing was farting. The nurse was laughing and I think that was when I found that sense of humour I needed so badly. When I am in company it makes farty noises and I simply say excuse me or I laugh, depending on the company. I always carry a towel and a change of stoma bags when I go out but I can't change the bag myself as I don't have 4 hands and it is in such an awkward spot I can't see it. I normally go out with a family member anyway and if there is a lot of walking I take a wheel chair so it is easier to hide any accidents. I have had a bag last for 4 days before needing a change or I can have up to 6 changes per day depending on the output. Something called Gastrostop can become your best friend. If you find your output is liquid an emergency aid is Marshmallow and it works quickly. eat about 6 and it will stop the runs. They taste good too. I am diabetic so I have to be careful with them. Mention it to your stoma care people they will confirm that for you. They can also give you a list of different foods to avoid while you heal and things you might choose to avoid plus things to reduce odour and soften up your stool or firm it up. (Sorry bit of a tacky subject I know.) Prior to becoming sick I was fine with dairy foods but now I can't eat them as they go straight through me and I adore yogurt and all things milky. I can tolerate a little milk in my coffee etc. It is a tough thing to get used to in life but you will get used to it. Laugh as much as you can and understand you have absolutely no control over your stoma, but you can learn to understand it better with time. You might feel bad about the bag regarding your sexual being but you can get some stunning sexy and lacy knickers to wear over it. Understand Cancer is a word not a sentience and you can live with it as you relax. Try to find your place of peace and learn to let go of the things that are no longer important. Pamper yourself and learn that you are in charge of your life. If you are tired, relax and nap if you don't feel like talking, don't. Find a confidant and talk to them when you need. Reach out to others and never feel like you have to do this alone. Learn to love and live every moment you have and be daring. Dance,laugh, cry, swear, be you and find your inner peace. Have a life but don't let this rule your life. Yes you will make some changes but once made let them go. I am happy to chat with you on this forum if you want to. I dyed my hair a bright deep purple red, and cut it in a bob so I went a bit will for a 67 year old lol. The chemo I am having won't make my hair fall out but it might make it go curly. Hey I always wanted curly hair!!! Wishing you all the luck in the world Regards and love, Suz123.
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July 2020
1 Kudo
Wow Simon you have a way of making me think which is pretty damned good with my brain right now. The best three things in my life right now:- 1/ Has to be my family. They are an endless source of support and humour and I don't honestly think I would be here if I had not got them. They will even crack jokes about cancer and even about death and what they want me to do when I pass to prove there is life after death. My eldest is a gamer and she has definitely asked me not to write anything on her puter to say hey hun I am still around cos it would scare her shitless but I can possess her dog and make it bark to go outside to pee instead of peeing on the floor all the time. Go figure how that girl's mind works. 2/ Has to be the fact my husband left me a while after surgery and I was still in hospital. I am not bitter about it at all and am really happy he did so. Now I can concentrate on me and fighting this darn disease and not worry about doing his dirty washing or if he needs to talk through his problems. I really do simply wish him all the happiness in the world. 3/Believe it or not, my cancer is one thing too. Before it I was in a very unhappy marriage, that is not so now. I am in a lovely aged care facility and although it happened about 10 years before I expected it to I am grateful to be here. I was also alienated from 2 of my daughters and now I have terminal cancer they are back in my life and we are loving each others company. I am now a much nicer person than I was before I got sick and my life was so bad prior to my illness. I have lost 30 kilos and feel all the better for that. I am more active and I have found an inner peace that is breathtaking at times. I suffered from a mental illness and yes it is still there but I no longer need heavy duty medications for it and I am symptom less from it. My mind has seemed to have shifted into gear and is cooperating with me instead of fighting against me. (Yes I am being supervised with this and didn't just stop taking the meds off my own back.) My kids tell me I am just like their old mum of about 20 years ago. I now allow myself the freedom of letting out my feelings and I laugh and cry and get grumpy. I dance and sleep and watch TV and walk when I want to. I have much to be thankful for. Thank you for this thread I enjoyed it immensely. I think it is important to be grateful for the wonderful things in life at a time it is so easy to forget. Regards Suz123.
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July 2020
1 Kudo
Hey Phil, I am new to all this but your post jumped at me cos I have stage 4 Bowel cancer and am going through chemo now. But my biggest bitch of all is I can't ever sleep on my side again! Whinge whinge. I have to sleep in an adjustable bed and have to sleep almost sitting up as I have a stoma bag that leaks like crazy if I sleep on either side. I miss curling up so badly! Sometimes my body aches to sleep on my side I just do it and damn the consequences lol. Thank goodness when they gave me my stoma bag I was given a great sense of humour with it. You have to laugh about it all. As to the chemo I wear a new fashion accessory which is a lil bottle, containing the chemo in a shoulder bag that I tote around for 2 days. This is my first course and I can honestly say I am having no side effects at all, touch wood. I know I am not going to lose my hair but it might go curly. Guess what I have always wanted curly hair. I am a 67 year old female and live in an aged care facility. Now that has a lot of things to complain about but all in all I love it here. About complaining, complain hun, you deserve to when you need and a problem shared is a problem halved. I am currently writing a six paged letter to the minister for aged care. I have become a placard carrying pensioner lol! I wish you all the best on your cancer journey and I hope you have a good outcome but a positive mind and outlook helps a great deal. Find your humour where you can oh and I hate to tell you this, they do just shove all your innards back as they can, it takes time to get it all to feel natural again. Good luck and the best of wishes, Suz123.
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July 2020
3 Kudos
Dear David50, No one is ever truly alone. You posted on here and look you have made some connections already. I have stage 4 Bowel cancer and it is terminal. It is my journey's end and I am at peace with myself for the first time in a very very long time. Finding this forum has been a Godsend for me because I can talk about things here I can't talk about with my family. If you want to I would be happy to connect with you in this forum and perhaps it will take away a little of your loneliness and fear. I have been given 2-4 years but by God I am going to fight for longer, 12 years is my goal. Longer if I can. I hope you can find the strength to fight too. I am uncertain of what PNET is but you could explain if you wanted to or direct me to a place I could find out for myself. Please just know, NO ONE IS EVER TRULY ALONE my friend. Kind regards, Suz123.
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July 2020
1 Kudo
I read your post with great interest and I am facing the end of life myself and I know your mind goes in every different direction as you try to sort out everything before you go. There is one thing and I know it is in your heart because you love her dearly. Just wish her every happiness in life once you have gone. Full stop. You don't have to name it. She will have no desire to find a man right now nor for some time after, if ever. She loves you dearly and it will take some amazing man to ever try to take your place. There is no one else that CAN take your place as you are a unique and loving man so please rest easy. If, in the many years to come she finds a person that lessens the pain of losing you, you have no idea what form that will take. It might just be friendship. So just wish her happiness, pure and simple. I am in a position where my partner left me a couple of months after surgery and I was still in hospital. I still wish him all the happiness in the world. However I am far from alone and I am at peace with my final journey. I have a deep and enduring faith that helps me no end. If this subject is too difficult for you then place it in the hands of your god as you do have faith too. When I discover something too difficult for me to deal with that is what I do. It really helps. I wish you all the peace in the world and I know you wish that for your darling wife so don't think about her having another man, love her as much as you can so you stay in her heart forever. There is no man that can or ever will take your place. Enjoy every moment you have with her as these are very special times for you both. Take this journey hand in hand. Kind regards, Suz.
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July 2020
4 Kudos
I love this topic as I am facing this right now. I have stage 4 Bowel Cancer and with chemo have 2 - 4 years left but I am aiming for 12 years which sounds really much better. I am receiving chemo as we speak, and have a very glamorous fashion accessory in the shape of a bottle hanging in a very smart lil shoulder bag on my shoulder with a line that goes into an infusion port just under my right collar bone. I have a problem with sleeping hence this late reply, currently 1.30 pm. I am a very spiritual person and I believe the soul goes on when the human suit stops working. I believe we are basically a spirit being having a human experience for whatever reason. I have a strong belief in my concept of God and it brings me great comfort. I guess my fear lies in the way I will pass, pain wise, breathing wise etc but I have great trust in my medical and palliative team so I place that in their hands. I live every day to the fullest. In fact I grab it by the balls and shake the shit out of it. I laugh, I joke, I dance, I sleep when I can, I cry, I get depressed but then come back out of it. I lose my temper, sometimes, and others I go out of my way to be kind. I pray, but not for a cure, for strength to do what must be done. I Have three wonderful daughters and I thank god for them every day. I thank god for everything in my life. yes even the cancer because it has turned me into a much nicer person. Now to the other part... what if I am wrong? What have I lost? Faith gives me a great deal of comfort in this life. I have my belief of what will happen afterwards and it makes me so much stronger but what do I lose if I am wrong.....absolutely nothing. I still have my comfort when I need it and if it all ends with my last breath so be it. Thankfully I believe my soul will go on....One to what? Ahhh that is the next great adventure. People don't realise this but just like being born, death is a life process and one we all go through. I have seen a man die of cancer and it was very peaceful and very easy.He had his pain under control, his wife by his side and a nurse. He died at home, as he wished, and after, his friends all gathered around him to say goodbye. It didn't look like a struggle at all and that is what I choose to do, to slip quietly from this world with my girls with me if they wish to share that with me. I am 67 years old, female and enjoying everyday as it passes. I am in aged care and have made my advanced health care choices known. I have done the hard stuff. Now I choose to dance in the sun for as long as I can. I hope this makes sense and I have explained these feelings of mine adequately enough. Kinds Regards, Suz.
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July 2020
Hey Itsangie! I am so sorry to hear about your Dad and though a lot of things you said ring true for me (stage 4 bowel cancer) I can't advise if your Dad is dying or not but my daughters, 3 of them have become very close to me as I go through this. I had surgery in October 2019 but could not have chemo to begin with as I was so weak. 8 months later I can,and am receiving chemo. I am so lucky as I feel stronger now than I have in years which I know sounds weird. Why I am replying is because of how much my daughters have helped me deal with all this. I don't honestly think I would be here without them. They are there every step of the way and encourage me to do exactly what I feel I need to do. If dad isn't eating all you can do is maybe try to tempt him with things he loves or just be there to hold his hand through times he can't eat. There will be times he won't want to talk or even have company and that is fine but do poke your head around his door and just ask if he needs anything. It can be a thankless job at times, being the main care giver but your dad will be so glad he has you even if he doesn't show it. Dealing with end of life stuff for the carers can be very emotional and please try to get in contact with other caregivers for advice. This is your father's journey, but not his alone, you have the journey to take too. Don't try to carry the burden inside but talk to others as they will have ways they have coped to share with you. I have three daughters as I said and each one deals with this in their own way. I am completely at ease in my mind with my journey and what is to come and have made all the plans I need for it. If you can talk to dad about how he would like to travel this road and how he is prepared for the end with regards to his care. Make sure you have it all written down for him to sign with regards to life support and stuff like that. It is a hard subject and probably one of his medical team will broach the subject with him. If they don't, ask them to begin the subject for you. I have invited my daughters to all of my medical appointments so that I have at least one extra pair of ears to listen and they can also ask questions too. It helps me no end. They call me most days as I am in aged care home. As a care giver your health is just as important so please take good care of yourself. My name is Suz and if you ever want to talk again I would be happy to do so. Be brave and just be there for Dad when he needs you. Try really hard to not get lost in this as you need your life to give you some balance. You need to recharge your own batteries and do little things to pamper yourself. This sounds trite but it makes you stronger and better able to cope. I wish you all the luck and love in the world and hope this helps in some small way. Kind regars from Suz.
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July 2020
1 Kudo
Hi, My name is Suz and today was my first day of chemo... but I am jumping ahead of myself. I was diagnosed in October 2019 with stage 3 B obstructed bowel cancer. I thought I was constipated but it turned out a little more serious than that. I was rushed to Fiona Stanley and given emergency surgery to removed said cancer but the next day the stitches failed in the bowl and I ended up with sepsis and a second surgery was performed and I was fitted with a brand new stoma. Again it was an emergency and there was no planning where to put the darn thing so they picked just about the worse place to put it and I am unable to actually change the bag myself. I ended up on life support for 3 days but I don't remember much about the first 3 weeks which is kind of a blessing. Being of the delicate age of 67 I made the choice to go into aged care so I could get the help I needed with my stoma as I didn't want to be a burden to my kids. Oh forgot to mention my lovely husband decided to leave me 2 months after surgery and he left me with no money and no way to live on my own even though I had a perfectly good granny flat to live in. Now please don't think I am bitter as it was the very best thing he could have done and I am perfectly happy without him. Now I can concentrate on myself and my health. After 5 months in hospital it was decided that I was so weak chemo would probably have killed me or at the very best left me in a wheelchair and they thought I had a good chance of it being removed as they got great margins with the removal. Unfortunately with my first PET scan it was found the cancer had recurred in my bowel and the lymph glands were involved so I entered secondary cancer stage. Fortunately I am much healthier now and can have chemo. In fact I had my first session today and I have a brand new infuser port under the skin of my right collar bone which is working wonderfully. I know it is only my first day but apart from the needle hurting going in as I hadn't been able to have a numbing patch and I was very bruised everything else has been so easy. I am not really having many side effects at all apart of a tiny touch of nausea which one Maxalon fixed quickly. I know it is early days and it is going to get more intense but so far so good. With chemo they say I could get 2 - 4 years of extra life but I have heard stories of people lasting for up to 12 years. I am choosing to go for the 12 years so wish me well with my fight. I am very positive and up beat. I have had my feelings of numbness, anger, and fear with lots of tears but right now I am in a great space and accept all that is happening. I never asked why me? I figure why not me, I did everything bad for me and now have to pay the consequences, but enough of all that. I will say one thing about that though, I had two test kits sent to be one at 60 years and one at 65 years old but I was silly and thought I can't do that yucky thing so I didn't. Things might be different now if I had but I am not angry about it. I do now take every chance I get to encourage people to take the test. I have a great team treating me in Rockingham and I love the aged care facility I am staying in. I am lucky to have a wonderful set of three daughters who have been amazing. I have talked about my advanced medical care plans but have to do one for the hospital. I am lucky enough to have palliative care in this aged care facility so I don't have to end my days in hospital. Yes I have a very uncooperative stoma that insists on failing at the most awkward of times but hey when you get one of these babies you quickly learn to have a great sense of humour about the whole thing and you carry towels and blankets to cover yourself with, lol. I have become quite the teaching aid when it comes to applying the silly thing I just can't see to do it myself and I have not been blessed with four hands which is what it takes to apply successfully. I am perfectly happy to answer any questions you have about anything I have mentioned and any insights into what is to come are more than welcome. Oh on a really good note I used to be really fat but I have lost 30 kilos. For now I am not allowed to lose any more but I feel so much better without carrying all that weight, I just don't recommend the diet, lol. Well that is me in a nutshell but there is one big fly in the ointment, I suffer from insomnia and I haven't slept a wink all night. Well life is never perfect. All my love and best wishes, Suz.
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