FMW Posted February 16, 2019 Share Posted February 16, 2019 There's nothing wrong with looking forward to things in the future, but for now unfortunately you are going to have to just take it day by day. Having specific dates or events in your head for goals is just going to make you feel worse if it turns out he's not stabilized by then. This is going to be a long term process unfortunately. Try to re-frame your thoughts to just live in the moment for now. Link to post Share on other sites
Author ShaunaN Posted February 16, 2019 Author Share Posted February 16, 2019 There's nothing wrong with looking forward to things in the future, but for now unfortunately you are going to have to just take it day by day. Having specific dates or events in your head for goals is just going to make you feel worse if it turns out he's not stabilized by then. This is going to be a long term process unfortunately. Try to re-frame your thoughts to just live in the moment for now. It really is hard to. I'm scared of getting that call, or going in and he has had such a seizure he doesn't know who I am. I wish we wasn't going through this. Link to post Share on other sites
FMW Posted February 16, 2019 Share Posted February 16, 2019 I understand, I really do. But you have to get out of denial and deal with the reality. It really will make it less stressful for you to stop fighting it. Have happy plans for the future, that's important. Just realize that for now they have to be on hold. This is why support groups or counseling is important if they are available to you. 1 Link to post Share on other sites
Author ShaunaN Posted February 16, 2019 Author Share Posted February 16, 2019 I understand, I really do. But you have to get out of denial and deal with the reality. It really will make it less stressful for you to stop fighting it. Have happy plans for the future, that's important. Just realize that for now they have to be on hold. This is why support groups or counseling is important if they are available to you. We have the Macmillian nurses and the helpline. I just want it to go. I'm finding it tough and I shouldn't let it get to me but it does. I am dealing with the reality its a very harsh one. I just want to dream is that bad? Link to post Share on other sites
BaileyB Posted February 16, 2019 Share Posted February 16, 2019 Shauna, I’m so sorry for what you are dealing with now. Your posts really take me back to the days after my mom was diagnosed and the difficulties we had to deal with her hospitalization, treatment, and prognosis. You do what you just to cope. There is no right answer. I will say what what said to me by a nurse - be kind to yourself, and each other. Everyone is coping as best they can with this situation. Never lose your hope, it is important to have hope and to try and normalize what you can. But, you must also try to deal with the reality of the situation. And, as was previously said, stay in the moment. Take it day by day. It is called a “journey” for a reason... hugs to you. 1 Link to post Share on other sites
Lotsgoingon Posted February 17, 2019 Share Posted February 17, 2019 Shauna, Again, my heart goes out to you ... I can say nothing puts you into a different category of experience more than being with a loved one who is suffering or going through a frightening experience like cancer. Just know this ... when your bf couldn't identify you at first ... EVERYONE in your situation WOULD FREAK OUT ... everyone ... What people do ... and I'm betting that it's what you did ... is FAKE IT for a bit ... you fake some normality to calm the person and to calm yourself! That's fine ... it's strange but fine ... definitely find a cancer partner support group ... get some exercise ... call up anyone you trust and like and talk your head off ... You're in a different zone, a different world, than the world of "normal life" ... You're going to be disoriented. That's OK ... You're not doing anything wrong. Freaking out is fine. And he shouldn't be home right? ... Because he has to undergo the chemo, I assume ... So he needs hospital supervision and care. You would be overwhelmed and he would be overwhelmed if he were home, right? Home doesn't improve someone's condition ... All going home does is dramatically increase the amount of work and care that the partner has to perform. Link to post Share on other sites
Author ShaunaN Posted February 17, 2019 Author Share Posted February 17, 2019 Shauna, Again, my heart goes out to you ... I can say nothing puts you into a different category of experience more than being with a loved one who is suffering or going through a frightening experience like cancer. Just know this ... when your bf couldn't identify you at first ... EVERYONE in your situation WOULD FREAK OUT ... everyone ... What people do ... and I'm betting that it's what you did ... is FAKE IT for a bit ... you fake some normality to calm the person and to calm yourself! I did, I faked it and just said who I am. and kept it calm and when his memory come back he asked why I was really upset, I said nothing and he said "I know when something is there upsetting you, please tell me so I can sort it, Miss CCNA". When he called me that name I knew it was him. I told him and he apologised said he didn't know what was happening. Just wish it didn't happen That's fine ... it's strange but fine ... definitely find a cancer partner support group ... get some exercise ... call up anyone you trust and like and talk your head off ... I am in a local group. They are supportive, started telling me all sorts of benefits to claim. That was the first thing they told me to get everything "I'm entitled to". I'm also a member of another group, they help a lot more. You're in a different zone, a different world, than the world of "normal life" ... You're going to be disoriented. That's OK ... You're not doing anything wrong. Why do some people make me feel like I am. My other aunt does, I've had friends telling me to walk away. I really do love him. Gym helps as well as his best friend and my best friend back home. Freaking out is fine. And he shouldn't be home right? ... Because he has to undergo the chemo, I assume ... So he needs hospital supervision and care. You would be overwhelmed and he would be overwhelmed if he were home, right? Home doesn't improve someone's condition ... All going home does is dramatically increase the amount of work and care that the partner has to perform. The doctors have said if his seizures had either stopped or become manageable he would be allowed home as they can do chemo as an outpatient but because he is still having seizures they really don't want to let him go yet. I know I'd be overwhelmed but at least at home he has all his home comforts and its more comfortable. Don't get me wrong the NHS has been amazing. I can't fault them.I get what you are saying. I just wish this was all a nightmare and I was to wake up soon. When he is alright he is walking, talking. I saw him showing a flight tracking website to some kids who were visiting others on the ward. Its as if he wasn't unwell if you get me? Link to post Share on other sites
elaine567 Posted February 17, 2019 Share Posted February 17, 2019 You want to get everything back to normal and having him at home seems normal, but it won't be normal. It will be anything but normal. All that care he is receiving will be on you, all that responsibity for his well being will be on you, and all that worry will be on you. At the moment if he has a fit a medical team comes scurrying, what would you be able to do for him? Can you lift him, remove him from a place of potential danger, put him back to bed? At the moment a team of nurses and doctors are monitoring him 24/7. How would you sleep, have a bath, cook a meal, go out for groceries, live your life knowing at any minute he could have a fit... NO, leave him where he is best cared for at the moment. Link to post Share on other sites
Author ShaunaN Posted February 18, 2019 Author Share Posted February 18, 2019 (edited) I get what you are saying. Last night was a little strange. He is in a side room and he said for me to get on to the bed and cuddle up with him, it was really nice to. I felt so close. A nurse come in and said it was about time we were cuddling and that will do him more good than anything. I did fall asleep too cuddling up and it was the best I've slept in a while. Things did take an even stranger twist this morning. He did say he feels his time is near and I'm looked after if he does die. Then, he did say before he got that bad he would like to marry me. It was so strange. Its like he knows or suspects it will happen. I said we need to be positive and we can get married when he is better down the line Edited February 18, 2019 by ShaunaN Link to post Share on other sites
Author ShaunaN Posted February 19, 2019 Author Share Posted February 19, 2019 My boyfriend got a letter from his work calling him to discuss his "Non-attendance" Link to post Share on other sites
FMW Posted February 19, 2019 Share Posted February 19, 2019 Wow. Are they aware he's fighting for his life right now? If so, that's unbelievably cold. He needs to be on a medical leave if it's available. Link to post Share on other sites
Author ShaunaN Posted February 20, 2019 Author Share Posted February 20, 2019 Wow. Are they aware he's fighting for his life right now? If so, that's unbelievably cold. He needs to be on a medical leave if it's available. They do. The guys have even sent him a get well soon card. His manager say's that he can do 1-2 days a week work back to a phased return. They don't want to keep paying him sick pay. Link to post Share on other sites
Lotsgoingon Posted February 20, 2019 Share Posted February 20, 2019 Talk to your support group people about the letter bf got from his job. Also the hospital social workers ... and the nurses ... can probably help you and him apply for temporary disability or whatever programs are available. On bf mentioning death. Right as my ex was being wheeled away to surgery, as she's lying on her back, she wanted to sign my hand or a piece of paper saying that I should get a portion of her family's beach house in case something happened. She survived the surgery fine, and I was touched by her gesture (which wouldn't counted for anything among her family or in court). Sometimes, I'm afraid, people do have a sense that they are going to die. Chemo can be so brutal that I think it's normal for them to have that sense ... So you're probably struggling with ... is he just feeling despair over chemo ... or does he have some real intuition that he is dying. Could be one or the other ... or both ... Yes, I found these kinds of moments the hardest to deal with ... my brother was dying from complications of a stroke ... and basically he lost his appetite and was clearly dying ... I remember sorta pausing in the car in the parking lot of his nursing home ... trying to psyche myself up before going to meet with him ... Shauna, just know: there is no "normal" way to be right now. Just your concern is good ... I'm glad you got to cuddle! ... One thing I'll say is bring food you really like when you visit him ... music you really like ... hug him, kiss him (if you feel that) ... What you're going through is so difficult and frightening ... the fear is what jumped at me ... I didn't realize how scary caring for an ill loved one could be. Don't be afraid to step out of his room, go down the hall and call up a friend to process what you're going through. He is leaning on you ... You want to lean on others ... just know: you leaning on others is so much less hard for the people you call ... than him leaning on you for now ... So don't feel guilty about calling others ... Before he goes home ... just make sure the nurses set up all the visits he is qualified for ... he probably qualifies for a visiting nurse, visiting therapist ... Call/text ALL of his friends and family and arrange for them to come over. You want to not take up all the caretaking on your own back. You're doing great ... despite all the emotions screaming otherwise. You will never regret fighting through this period of despair to see after someone you love. You'll never regret it! Link to post Share on other sites
BaileyB Posted February 20, 2019 Share Posted February 20, 2019 (edited) They do. The guys have even sent him a get well soon card. His manager say's that he can do 1-2 days a week work back to a phased return. They don't want to keep paying him sick pay. Your boyfriend should call his boss and say that he will discharge himself against medical advice to come to work... That is the most insensitive and ridiculous thing I have ever heard. My coworker just returned from a leave - she had stage 1 breast cancer (there always a 90% survival rate, it was very treatable) and she was away from work for over a year. Get a note from the doctor, talk to the social worker, do whatever you can to resolve this situation. Depending on where he lives/works, the employer requirements/insurance coverage will be very different. Of course, the employer wants to limit the liability of paying for the “sick leave,” but short term disability and long term disability insurance exist for a reason... Edited February 20, 2019 by BaileyB Link to post Share on other sites
Author ShaunaN Posted February 20, 2019 Author Share Posted February 20, 2019 Thank you. He said he would speak to his union about the letter and I'm not to worry. I know theres no normal way. I just want it to all go away. I spent the other night here. Spoke with the nurses. I'm on first name terms with most of them. They all say how great my boyfriend is. This ward isn't a cancer ward as such. Its a general ward, so they are doing the best they can. One nurse said she saw us in bed together cuddling and they didn't mind and it looked cute. I've started to take home comforts and favourite foods in. Me and his best friend have drawn up a sort of rota to sit with him during chemo sessions. So he isn't alone. I've had coffee with her, We've been leaning on each other too. I have to admit I was scared of her when I first met her. She is lovely. She is just as worried. She was telling me about a time she was stuck in Scotland due to snow. Her flight was cancelled and so were the trains and how my boyfriend went up to get her. She was freezing, and tried telling him off for coming up in the snow. He handed her a flask of coffee and said here warm up. Made me smile the stories we have been sharing. Thank you. I really don't feel I'm doing good. Link to post Share on other sites
Author ShaunaN Posted February 20, 2019 Author Share Posted February 20, 2019 Your boyfriend should call his boss and say that he will discharge himself against medical advice to come to work... That is the most insensitive and ridiculous thing I have ever heard. My coworker just returned from a leave - she had stage 1 breast cancer (there always a 90% survival rate, it was very treatable) and she was away from work for over a year. Get a note from the doctor, talk to the social worker, do whatever you can to resolve this situation. Depending on where he lives/works, the employer requirements/insurance coverage will be very different. Of course, the employer wants to limit the liability of paying for the “sick leave,” but short term disability and long term disability insurance exist for a reason... They pay full sick pay but the company is having a hard time keeping staff, I left because of the manager and she will really want him back to cover the shortfall of staff. Link to post Share on other sites
FMW Posted February 21, 2019 Share Posted February 21, 2019 I'm glad he's in a union that can look out for his rights. Link to post Share on other sites
BaileyB Posted February 21, 2019 Share Posted February 21, 2019 They pay full sick pay but the company is having a hard time keeping staff, I left because of the manager and she will really want him back to cover the shortfall of staff. Too bad so sad... he’s busy with other things right now. Shauna, experiences like this bring a certain clarity about what is truly important in life - and work, doesn’t even make the list when you are fighting cancer. Things are not normal right now. They may never be normal again. It’s ok for you to not be doing well. What you are dealing with is terribly difficult. Find comfort and support when you can. Don’t forget to take care of you, as you take care of your love. 1 Link to post Share on other sites
Author ShaunaN Posted February 21, 2019 Author Share Posted February 21, 2019 Too bad so sad... he’s busy with other things right now. Shauna, experiences like this bring a certain clarity about what is truly important in life - and work, doesn’t even make the list when you are fighting cancer. Things are not normal right now. They may never be normal again. It’s ok for you to not be doing well. What you are dealing with is terribly difficult. Find comfort and support when you can. Don’t forget to take care of you, as you take care of your love. I agree about work, His manager is awful. She warned me when I worked there about inter office relationships and said I would be disciplined if I dated someone there. Told me off on my second day because (and I kid you not!) I wore a turtle neck jumper. I've made me realise I love my boyfriend more than I thought I did. Don't get me wrong I loved him a lot but this had made me realise how much. I hope he knows this. I am taking care of me, Sundays I go to the Irish Centre and get to talk to someone and eat. So thats something. Link to post Share on other sites
Author ShaunaN Posted February 21, 2019 Author Share Posted February 21, 2019 Just had a weird comment off a friend. I should never let my boyfriend see me without make up as its a sign of weakness? Is that right?!? My boyfriend says I look great without it. Link to post Share on other sites
MidwestUSA Posted February 21, 2019 Share Posted February 21, 2019 Just had a weird comment off a friend. I should never let my boyfriend see me without make up as its a sign of weakness? Is that right?!? My boyfriend says I look great without it. Your friend is weird, lol! It’s what your boyfriend thinks that matters. I just read your entire thread; you’re an awesome girlfriend. I hope he makes a complete recovery, and you live happily ever after! 1 Link to post Share on other sites
BaileyB Posted February 21, 2019 Share Posted February 21, 2019 I should never let my boyfriend see me without make up as its a sign of weakness? That’s the best thing about a healthy, long term relationship... you get to the stage where you can just be your authentic self, you don’t have to put on a “mask” for the other person. It’s the sign of a good relationship, when you are comfortable doing this and your partner tells you he loves you - just as you are... Link to post Share on other sites
Author ShaunaN Posted February 22, 2019 Author Share Posted February 22, 2019 Your friend is weird, lol! It’s what your boyfriend thinks that matters. I just read your entire thread; you’re an awesome girlfriend. I hope he makes a complete recovery, and you live happily ever after! Thank you. I hope I am an awesome girlfriend to him, He means the world to me. My boyfriend said I'm gorgeous whatever I wear (Don't think I am though!). As for full recovery I am praying but its 50/50 at the minute. If this doesn't work surgery could be an option. Else well I don't want to say it. That’s the best thing about a healthy, long term relationship... you get to the stage where you can just be your authentic self, you don’t have to put on a “mask” for the other person. It’s the sign of a good relationship, when you are comfortable doing this and your partner tells you he loves you - just as you are... He does. He also lets me steal his clothes, I'm sleeping in one of his favourite t-shirts at the minute. When its cold I've been wearing his work fleece around the house. Date night in a hospital must be bucket list tickable? Tonight we are having a dominos and trashy soaps on the TV. I've got a gift card for dominos and I'm going to order the nurses a few pizzas too, just to say thanks so far. Link to post Share on other sites
Author ShaunaN Posted February 23, 2019 Author Share Posted February 23, 2019 Last night I fell asleep cuddled up next to my boyfriend, the nurses covered me in a blanket and they woke me up this morning with coffee and breakfast. Slightly embarrassing Link to post Share on other sites
Author ShaunaN Posted February 24, 2019 Author Share Posted February 24, 2019 Met up with his best friend this morning, We had lunch at the Irish centre and we talked about him. It was lovely I just wish I didn't have to go to the hospital to see him. I know that sounds bad but I just wish he was at home. I have to admit with my mum and aunt gone home I and feeling a bit vulnerable and lonely Link to post Share on other sites
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