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Hi Everyone

Hi Everyone. After FIVE months of trying to find out what was wrong with my 57 year old husband Mark, he was finally diagnosed with what was supposed to be only stomach cancer on the 29th March 2010. We were told he was only to have a full gastrectomy, however on the day of the operation it was discovered the disease had metastisised and thus my Darling has now had ( Easter Saturday) his stomach, spleen, Gall bladder, One lobe of liver, Head of Pancreas and the majority of his colon removed, he now wears a colostomy bag. It has taken 5 days for him to start to wake up from the induced coma he was in and he has finally opened his eyes for the first time last night (Thursday 8th April) when I went to talk to him in icu. This gives me hope that he may just survive the operation and then who knows what the next part of the journey will be.....being so seriously ill has left him very very weak so I don't know if he will be offered chemo as yet. I have joined this community with hope that I will learn something of what the future holds for he and our family. Like many here already know, I am sure, the shock of this has terrified us, including our children (twins) who are only ten years old.....I am feeling very scared and lonely, I can't even imagine the terror my Darling husband must be feeling in his (still sleeping) head right now. Anyhow I hope I have made the first step towards the light of understanding about how this will change our lives and where we go from here. Thanks for reading this, I have tried to keep it breif for now, till my mind comes out of the fog to add more. regards Jewel
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Hi Jewel, Wow what a lot to take in for you all! My thoughts are with you, Mark and your children. I don't really know what to say except make sure that you look after yourself too, talk to as many people as you can and accept as much help as you can. I am new to this site too and already have found it a great place to waffle and vent, you will find that there are some amazing people on here who will have some fantastic words of wisdom and advice... I Hope that today is better than yesterday and that tomorrow is even better. Katie 🙂
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Thanks Katie, At the moment, all I seem to do is cry, everything is whizzing around in my head constantly, the last fortnight, or so, has been surreal,I forget what day it is and what time, the silence of the house at night is terrible, I don't think I really believe, or understand yet, what has happened to us....that is possibly sign of shock. It has scared me so much I went to my GP yesterday and demanded a full set of bloods to be taken, even though I know rationally, it's not catching, I am frightened I might have cancer too... :( I have been reading mountains of information, but the info only seems to deal with when you have one "type" of operation for a "type of cancer" , there doesn't seem to be a lot that talks about the effects or how to deal with "multiple organ removal". Anyhow, I figured I better start somewhere, the "Hospital system" (where Mark is) doesn't seem to be very supportive or offer much information to me at this stage....it's so hard to get answers from doctors or nurses despite my desperate questions and I am just so drained from constantly asking them what and where do we go for help. Sorry if the above reads fragmented, it seems to be the way my brain works at the moment. :( Thanks again Jewel
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Hi Jewel, Never worry about the way the words come out. I find it great therapy! If you are up to it, try calling the Cancer Council Helpline, they may be able to point you in the right direction to get relevant information. 131120. It must be so hard for you, you obviously have an incredible bond with your husband and it must be frightening. Try to take each day as it comes, and keep asking those questions! Sometimes knowledge can help with strength. I don't know too much about multiple organ removal, but I am sure that someone on this site may be able to help. It is hard when the only information that you can find is for specific cancers and stages, there is little information available covering "what happens when it has spread", I am sure that it is out there but I have no idea where or how to access it (yet). I am looking for further information too (while I am a cancer survivor, my dad (70yrs)has cancer in his bladder/kidney & now bones) and surgery isn't an option due to other health issues but he is having chemo to help with the cancer in the bones. Feel free to contact me if you want to talk! Katie 🙂
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Hi Jewel, You and your family have been through so much in such a short space of time, it is totally natural and understandable that your head is spinning. You have come to the right place here to offload those disjointed thoughts and share the many emotions that you will be experiencing. We can't necessarily help with the medical questions, but the fears and frustrations of having a loved one diagnosed with this cruel disease are all very real to us. We know how tough the days and in particular the nights can be. As Katie has said, accept as much help as you can, people will want to do stuff for you and whilst it is very hard to say "Yes", and "Thank you, that would be great", start off with little things at first if you have to, offers of meals, playdates for your precious children, chauffering you to the hospital...these are all things that can lighten your load just a little, because Jewel, your load is heavy and you need to share it with someone else. When my husband was first diagnosed I had lots of mums at our sons' school saying "If there is anything I can do, just let me know". I chose to 'deal' with that by creating a 'register/spread-sheet' that I carried around in a clipboard file. When someone heard about our situation and made the 'offer', I would ask them to complete the sheet which had name/telephone numbers/email address and when they were NOT available (eg. due to work/sporting committments/music lessons etc). Whilst some of the people I already knew that information, I felt it showed them that I was taking their offer seriously by getting them to put it on paper...... and it was one less thing I had to do! I carry the file around with me, so that if at any time I need someone to pick up the boys from school, or have them while we are at an appointment, I can instantly see who is available on that particular day, rather than make 10 phone calls. I also have chosen to update friends/family by email to try and limit the amount of time I was spending on the phone, particularly of an evening when the boys were needing my attention. It helps to get the same information out to a lot of people and therefore hopefully reduce the 'chinese-whisper' effect! The other suggestion I would make is to contact the children's class teacher/s and Principal to inform them of the changes at home, keeping them informed will help them to support you and keep school a 'safe' place for your children. Our school has been terrific and I see the school chaplain on a regular basis, we are lucky as it is a fairly small school with a lovely community feel. I hope this information is helpful to you, obviously you do whatever feels right for you and your family, just thought I would mention it. Anyway, that is enough for you to process for now!! just to add more to your already overloaded mind. This site has been a god-send to me on many an occasion, the wisdom and understanding offerred without judgement by so many of the caring people on here can really make a difference. I hope you find it helpful too. Take care of you, it is so easy as a wife and mother to put yourself last, but it is so important that you get a network of support around you. Friends and family can be great, but sometimes we need to be able to share the warts and all stuff to get it off our chest and that is where cancer connections comes in. Thinking of you and sending you strength, Jill
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Hi Jill, Thank you very much for your kind reply and the very practical ideas. I tried to phone the "Griefline" number that was passed on to me tonight by the pastoral care from the hospital.... I got a fax machine, so I tried to phone the numbers of the local cancer groups(which by the way are not that local to me as we live far from the "burbs") and I got an engaged line and the other a "number not connected". I was in the process of looking online for something when your reply came through, thank you. I have caught up on your blog and note that your situation is very similar to mine, except the specifics of the cancer that our husbands have been diagnosed, the emotions are the same and we have young children to care for through this roller-coaster of turmoil. Your family is a year down the line and when I read your reflections of the loss of your "former" life it really struck a cord with me.... I realise now that nothing will ever be the same again for our family too... the grief of this realisation is overwhelming. I sit here tonight in the darkness and wonder why... I sit here and try to think of a way to make the nightmare go away.... I sit here and try to find the answer and it doesn't come... I keep wishing I had seen the signs earlier, now when I look back they were there, I didn't pick them for this nightmare, I blindly thought the signs were normal stress of living a normal busy life. I tumble between anguish, fear, anger and rage and then back to crying that this could happen to us. It's not fair, we have had our share of life stress and issues caused by others, we had moved on, to a place where the future was a wonderful prospect and we were a very very happy family unit and now it's gone... I worry about Mark, I worry about our babies, I worry about where we are going to live if we have to sell our home because we can't affords to stay here, I worry about the future, what if something happens to me? My parents are long dead, Marks family live in another state far away and are not even remotely close emotionally in so far as a cursory yearly xmas email is an amazing suprise from them....and now all of a sudden I am bombarded by them with impersonal phone calls requesting information about Mark, so now I worry how to deal with them..... I feel so lost.... Will it always be like this now?????????????????......... kind regards Jewel
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Hi Jewel Wow! What a lot to happen in such a short time, no wonder your head is spinning, you are confused and the normally distant in-laws suddenly realise that they may not have that taken-for-granted son around and they had better not take him for granted. Families are funny things. My son-in-law's father and he never seem to communicate. It is well over a year since they have spoken in the 'phone and his father didn't even have a telephone number for him as we found out when he range here after the Black Saturday bushfires to check that he was OK. They get on well, just don't see the need to communicate. There has been some good tips in Jill and Katie's advice replies. Jill you are such a practical person you are an inspiration to muddlers like me. In particular, make sure that you look after yourself. Your husband is going to need a lot of looking after with a lot of life changing adjustments. Don;t be afraid to ask for professional help. See the social worker at your hospital, ask to see the dietitian and the OT as well. Make sure you find out what home help is available. A friend of mine who was a carer for her teenage daughter's cancer experience, once said that having someone come in for a few hours once a month to clean the house was heaven. Don't be afraid to get counselling for both you and your husband. Too many people leave this one too late. It is a time of transition for both of you and your children, and times of transition are emotionally uncomfortable. Take care. Sailor On life's vast ocean diversely we sail, Reason the card, but passion is the gale. Alexander Pope, Essay on Man
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Hi Jewel, All your feelings are totally normal. This is a very overwhelming time for you, Mark and the entire family. Worry and fear are very natural feelings to be experiencing right now. Also a feeling of helplessness, wanting to fix things and make things better but not being able to do a damn thing that will take the pain and chaos away. We humans like to feel that we are in control and when it comes to cancer, our control is very limited. Nothing will be the same for you and your family, you will all have a 'new normal' to come to terms with. It is do-able, it's not easy, but it can be done with good communication, tolerance, patience, understanding and time. Your children are at an age where they will most certainly be aware of changes and tension. All of the advice I have received from 'professionals' and resources I have read, suggest that it is best to keep the communication between you and your children open and honest, at an age appropriate level. You know your children best, trust your instincts, seek advice, there are great booklets available from the cancer council that help give you guidance on what to say, how to say it etc. Your kids need as much stability as you can give them, they will have questions, some of which you will know the answer, some of which you won't know the answer and possibly some which you wish you didn't have to answer. I was told to keep my answers as honest as possible, keep them short (as you may have worked out I have a tendency to 'go on a bit'!!!) and let them know that they can ask me anything, if I don't know the answer I will try to find it out from the Dr/nurse etc or if I needed more time to think about my answer to let them know I would like to think about it and I would get back to them, making sure that I did of course. Their world has been turned upside down and twisted all around, it is hard enough for us as adults to have to try and process it all and deal with it, let alone young children. Trust and feeling secure are very big for them. I'm sorry to hear that your in-laws are adding to the pressure you are already under. My hubby's parents are both deceased and he has been estranged from his two surviving brothers for the last 13 years. He only contacted them a few weeks ago to advise them of his state of health, resisting it for the last 12 months, but I think (though he won't admit it to me) that he wanted the opportunity to see if a reconciliation was possible. They have both been to see him once since then and we haven't heard from either of them again to date. Not sure what will happen there......I don't expect much as both of their visits were very impersonal and quite awkward. How does Mark feel about their contact?? Is it an option to advise them you will keep them (and others) updated by email and will phone them if there is anything urgent to advise?? Just an idea, given email seems to be their previous method of contact. I found it very draining to have the phone ringing constantly when Greg (hubby) was in hospital when his tumour on the brain was discovered back in December. I would have spent most of the day at the hospital (or travelling, an hour each way) and then would get home and have numerous messages on the answering machine to return and the phone would ring again as soon as I hung up from one call. Our boys would be wanting and needing some quality time with me ( as I needed and wanted with them) and the phone ringing was a constant issue. How long is Mark likely to be in hospital? Any ideas at this stage? Is it possible for a friend to come and stay with you a night or two, or if that is not possible perhaps just to be there for when you get home from visiting Mark, so that you have someone who can take calls for you while you have some quality time with the children. The nights can be very lonely, when your partner is in hospital and once the kids are tucked up in bed. Can a neighbour/friend pop over just to share a cuppa and give you some adult conversation and a chance to offload. Sorry, done it again, too much info to take in on top of what you are dealing with. As you mentioned, our situations are similar, not the actual type of cancer, but the family/emotions etc, I don't think it is just us who have that in common, you will find many on this site who have similar ups and downs, good days and bad days. Knowing that you have children close in age to my boys who are 6 and 8 has meant that I want to share as much as I can with you, being one year further on as you noticed. I hope it is helpful to you, please feel free to let me know if it's all a bit much at the moment! Take care, hoping you can find some brightness in each day that gives you the strength you need to keep pushing on. One day at a time,......sometimes it comes back to one hour at a time. Kind regards, Jill
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Hello Jewel, I can only imagine the turmoil you are in with what has happened, I think it is more the speed in which these things can happen that throws us more than dealing with the everyday. I can empathise with your shock to some extent. The best advice I can give you is, do whatever you feel you want to do...do not try to please anyone else. You are the one dealing with this, not his disconnected family. If you do not want to answer their questions then tell them. We all deal with things the way we can, so most importantly, ask for help if you need it, do not try and do it alone. I wish you strength and you have my compassion. Hugs Dizzy
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