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Date in hospital/after hospital


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Old 28th January 2019, 6:08 PM   #31
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Are you able to take a little time off from work?

Any prognosis on how long your boyfriend will be in the hospital?
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Old 29th January 2019, 1:55 AM   #32
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Originally Posted by Finding my way View Post
Are you able to take a little time off from work?

Any prognosis on how long your boyfriend will be in the hospital?
They've looked to discharge him so many times but they cannot get the attacks under control. They give medication it works for a day then they come back. So far he hasn't had one since sunday morning. So I think at least a few more days before they even look at discharging him.

I can take time off, but I can't if I have client visits booked in. I'm back Friday morning so booked friday off

Last edited by ShaunaN; 29th January 2019 at 1:57 AM..
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Old 29th January 2019, 3:42 PM   #33
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So no calls today, This is good. Means I can look to plan to get him home. We talked and I'll be moving in on a temporary basis. If things work out I'll move in permantly.

Now I do not know if his sick pay has ran out or if he can claim off his income protection. Would it rude or offensive of me to offer to cover the bills until he is back on his feet?

I spoke to my boyfriend he seems happier but I'm scared its all like the eye of a storm.
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Old 29th January 2019, 4:12 PM   #34
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Not sure what to tell you on money ... I had to stop myself from doing that ... offering to help friends ... But you might not have that problem.

Suggestion: make sure during this time of caretaking to take care of yourself. Get out ... go to movies, go visit friends. Caretaking sick people is exhausting ... and leads to higher rates of depression, blood pressure and on and on--even if you're taking care of a spouse you've loved for many years.

To cushion your burnout, get exercise, go have fun ... get sleep ... rest ... call up friends to take to to cheer YOU up ... Watch some funny movies. You have to take care of yourself ...
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Old 29th January 2019, 5:43 PM   #35
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Not sure what to tell you on money ... I had to stop myself from doing that ... offering to help friends ... But you might not have that problem.

Suggestion: make sure during this time of caretaking to take care of yourself. Get out ... go to movies, go visit friends. Caretaking sick people is exhausting ... and leads to higher rates of depression, blood pressure and on and on--even if you're taking care of a spouse you've loved for many years.

To cushion your burnout, get exercise, go have fun ... get sleep ... rest ... call up friends to take to to cheer YOU up ... Watch some funny movies. You have to take care of yourself ...
I know he has some form of income protection as well as sick pay. Not sure what he is getting though. I just want to make sure he has no worries, and we can sort something out if I need to pay them.

I'll be catching up with my friends in the UK and my cousin, I'll go gym or a class. My boyfriend is usually good saying I need to catchup with friends.

But at the moment I'm just worried about him
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Old 29th January 2019, 8:55 PM   #36
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I know he has some form of income protection as well as sick pay. Not sure what he is getting though. I just want to make sure he has no worries, and we can sort something out if I need to pay them.

I'll be catching up with my friends in the UK and my cousin, I'll go gym or a class. My boyfriend is usually good saying I need to catchup with friends.

But at the moment I'm just worried about him
And in awe of your enthusiasm for the caretaking. Taking care of my ailing parents and my brother (after he had a stroke) and my ex when she had breast cancer ... definitely things I am proud of ... possibly the most proud of. AND ... each of those experiences was at times exhausting. Sounds like you have some serious nurturing skills. Go you!

And if you have some extra energy, just make sure he has gone to top doctors ... and gotten second and third opinions ... if that is at all relevant.
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Old 29th January 2019, 10:03 PM   #37
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And in awe of your enthusiasm for the caretaking.
It's testament to the fact that OP really does love her boyfriend - when you love someone it's not even a question about what to do.

He's very lucky to have you OP, and yes, make sure and take care of yourself.

I'm happy to hear things seem to be turning a positive corner.
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Old 30th January 2019, 2:05 AM   #38
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And in awe of your enthusiasm for the caretaking. Taking care of my ailing parents and my brother (after he had a stroke) and my ex when she had breast cancer ... definitely things I am proud of ... possibly the most proud of. AND ... each of those experiences was at times exhausting. Sounds like you have some serious nurturing skills. Go you!

And if you have some extra energy, just make sure he has gone to top doctors ... and gotten second and third opinions ... if that is at all relevant.
Thank you. He helped me a lot when I moved to the UK. I just really want to look after him and help him. its without question. If I could take the pain away I would. He is very special to me.

As for the getting the best doctors, He is in the best neurology hospital in the area, Its in the top 5 in the UK. The NHS is amazing. He was admitted to a general hospital, doctors there said he needed a specialist neurologist and moved him to the current hospital, on the other side of the city. It all just happened. They keep me up to date if I've been away, plus they make sure I'm okay too.

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Originally Posted by Finding my way View Post
It's testament to the fact that OP really does love her boyfriend - when you love someone it's not even a question about what to do.

He's very lucky to have you OP, and yes, make sure and take care of yourself.

I'm happy to hear things seem to be turning a positive corner.
Thank you. Me too. I just want him home and we know whats up as we can fight it together.
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Old 31st January 2019, 5:29 PM   #39
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So no major attacks for a few days, Which is good.We're now looking after the hospital. We've got a meeting with the doctor on Saturday to discuss diagnoses and moving forward.

I see my old pre-seizure boyfriend back. My flight got cancelled. He got me a flight back home tomorrow. I was going to try and find a cheap flight tonight but he just booked me one. Said he wanted to make sure I got back alright.

I don't care how selfish this sounds or what. I can't wait to get him home, Just to cuddle up to him, just be able to touch him without disturbing a hospital machine.

I miss him, It might sound silly I bought him a model plane from the airport on the way out and I'll buy him one on the way back. I just want normality.

I have to admit I've also felt dizzy and light headed. I need to take care of myself.
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Old 2nd February 2019, 9:34 AM   #40
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So I went to the hospital yesterday evening and they said my boyfriend had a rough day and was asleep, He did wake up to say hello and a bit later on for me to go home and rest.

I was there and it was late the nurse comes up to me, asks if I'd like a coffee. Usually they'd be asking me to go. She brings me a coffee and we get talking. She asks if I've been looking after myself, We talk some more and she says the doctor is on the ward and she'll ask him to come and see me. I say I'll get my EHIC and if she brings the forms I'll fill them in (I'm an Irish citizen in the UK, So technically I have to fill out an insurance form so my home government pay) She seemed quite offended and said "No its free". I got checked over and the doctor said I need to look after myself, Eat and sleep etc. It felt like they were looking after me too. I go back to my boyfriend and sit with him. He is still asleep.

I wake up the next morning and it looks like the nurse covered me with a blanket. Seriously I wasn't expecting any of this. I just wanted to spend the night near my boyfriend. I got brought breakfast too.

Doctor comes. Sits down with us. It appears when they did some scans they found a tumour. They want to do a biopsy to confirm and start treatment. I think they called it a CNS lymphoma?? All I know is I'm devastated and I don't know what to do. They said 2 weeks is their standard referral time, but generally its a lot quicker. I wanted to say "Start treatment now".

We just cuddled for a bit and cried, He admitted he knew a for a few days but didn't want to tell me over the phone and wanted the doctor to explain everything. I asked what I can do to help. He said he needs forms to claim off his insurance's. My boyfriend is very practical. So he asked me to go pick them up for him. I go into the bank ask the person for the forms and they took me into an office. asked if I was ok and I just burst out crying. Had some random bank lady hugging me.

I go back with the forms, I ask my boyfriend why they were so important and he said "Well I don't want to lose the house. or worry about bills when I'm getting better."

I don't know what to do now.
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Old 2nd February 2019, 6:17 PM   #41
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What to do? You are there. That's "doing all you can"!!!

I did a quick google search and hopefully I'm wrong, but the condition you mention, CNS Lymphoma, is Central Nervous System Lymphona. The way, I'm reading this (based on quick google search--and I hope I'm wrong) is that he has cancer.

So what to do? ... Just go one step and a time ...

So start asking questions to the doctor and to the nurses. Get them to explain his condition ... how serious ... Definitely be there when the biopsy results come in and the results are announced to him. It's OK if you feel overwhelmed ... I remember terror ... feeling heart-pounding, dizzying terror when my ex got diagnosed with breast cancer and later when my mother diagnosed with bladder cancer.

BTW: I guessing by the treatment last night the doctors and nurses were politely telling you that his condition is serious. And I'm guessing they were expressing concern because you may only be at the beginning of a difficult treatment for him.

There is nothing miraculous you can do other than hold his hand ... be there with him. Support is huge. You're there to help him not feel alone ... With support, he can endure the treatments and the fear and all of that ... Just remember if you were in his position, you would simply want someone there to love you ... and that love ... would give you courage and energy to proceed.

Don't be afraid to ask the nurses and doctors to describe his diagnosis multiple times ... Anxiety makes it hard to take in medicine information in situations like this. You can also ask them what you "should" do.

The key thing now is get a bit more clarity on the preliminary diagnosis. And ask to be there when the biopsy results are announced to him. He will need you for emotional support ... and ... (cause he's gonna have anxiety too) for just intellectual clarity when the biopsy results are presented.

But let's hope the doctors' hunch that he has CNS Lymphoma is wrong. Update us when you hear more. You ARE doing everything you can do. My heart goes out to you.
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Old 2nd February 2019, 9:31 PM   #42
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My heart also goes out to you Shauna.

Hospitals here in the States have social workers that can let you know about support groups or other resources for the loved ones of patients going through treatments. You need emotional support yourself, as well as making sure you take care of your physical health.
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Old 3rd February 2019, 5:54 AM   #43
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Originally Posted by Lotsgoingon View Post
What to do? You are there. That's "doing all you can"!!!

I did a quick google search and hopefully I'm wrong, but the condition you mention, CNS Lymphoma, is Central Nervous System Lymphona. The way, I'm reading this (based on quick google search--and I hope I'm wrong) is that he has cancer.

So what to do? ... Just go one step and a time ...

So start asking questions to the doctor and to the nurses. Get them to explain his condition ... how serious ... Definitely be there when the biopsy results come in and the results are announced to him. It's OK if you feel overwhelmed ... I remember terror ... feeling heart-pounding, dizzying terror when my ex got diagnosed with breast cancer and later when my mother diagnosed with bladder cancer.
I am asking questions lots of them, The doctor who talked to us was really good. He said that if I have questions later down the line to ask the nurses to get in touch with him. It is cancer, It really had hit us hard. We had a Macmillian nurse come and see us have a chat. She is a specialist cancer nurse and had a chat about the next steps and such.

The staff nurse (Who is just a general nurse) of the ward has been very kind to me and my boyfriend. She said she has sat with my boyfriend talking when she has been on lates/nights when he hasn't had any visitors. (His mum and dad are old and they come as much as they can. His best friend comes as much as she can, but she works for an events company and travels around too).

Quote:
BTW: I guessing by the treatment last night the doctors and nurses were politely telling you that his condition is serious. And I'm guessing they were expressing concern because you may only be at the beginning of a difficult treatment for him.
I fear this too. Whatever is thrown at us we'll find a way through. My boyfriend told me, I'm to work as normal. He wants to hear about the trips and client issues I've encountered (We do the same job just for different companies).

Quote:
There is nothing miraculous you can do other than hold his hand ... be there with him. Support is huge. You're there to help him not feel alone ... With support, he can endure the treatments and the fear and all of that ... Just remember if you were in his position, you would simply want someone there to love you ... and that love ... would give you courage and energy to proceed.
I am there for him as much as I can. I've been staying over at the hospital as much as I can. He woke me up this morning wanting to chat at like 2am. He said he'd like me to move in and he's wanted to ask me for a while. Then he admitted he was scared, he felt his hand in the game of life might be coming up. I admit I cried. he said he has someone called Kevin he knows and is a solicitor to come and tie up some loose ends. He started talking about Holland and some people he knows over there and a holiday he took just as we were starting to be official.

He said if it all goes wrong and he doesn't make it. He wants me to ring some people in Holland. He started talking about a place in a town called Lelystad and if it all goes wrong he wants me to visit there. As apparently I will feel very close to him there. I told him we can go together and he can show me all the places he wants. . Its the first time I've ever seen him show real emotion at anything. He just puts a brave face on and this was his release.

Quote:
Don't be afraid to ask the nurses and doctors to describe his diagnosis multiple times ... Anxiety makes it hard to take in medicine information in situations like this. You can also ask them what you "should" do.

The key thing now is get a bit more clarity on the preliminary diagnosis. And ask to be there when the biopsy results are announced to him. He will need you for emotional support ... and ... (cause he's gonna have anxiety too) for just intellectual clarity when the biopsy results are presented.

But let's hope the doctors' hunch that he has CNS Lymphoma is wrong. Update us when you hear more. You ARE doing everything you can do. My heart goes out to you.
I've already asked to be there when they know the results of the biopsy to call me to come in. They said though the law requires them to tell my boyfriend first as he is of sound mind and can make decisions but they'll come and see us when I can get in and discuss it further.

I have to act all normal at work when I just want to cry, I don't want to travel to clients and work from the office. I know I won't be able to do that on some jobs I just want to be close by.

Quote:
Originally Posted by Finding my way View Post
My heart also goes out to you Shauna.

Hospitals here in the States have social workers that can let you know about support groups or other resources for the loved ones of patients going through treatments. You need emotional support yourself, as well as making sure you take care of your physical health.
They have the same in the UK called Macmillian nurses. My mum and an aunt has said they are booking flights from Ireland to come and look after me as well as support me.

Thanks for letting me release here.
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Old 3rd February 2019, 11:38 AM   #44
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People here are so nice!

I went to church this morning, I felt I needed to pray ended up at the Irish centre near my boyfriends and someone who was like my grandma got talking to me at the centre, got me food and said I wasn't allowed to leave until I've ate everything. I guess I needed a trip there. Reminded me of home. I guess I was also feeling home sick. I've joined up to the centre and they have a lot of events so its another place for me to go.

I know holding his hand helps but I just feel helpless. I want to take the pain away.
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Old 3rd February 2019, 12:36 PM   #45
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Shauna,

Are there some good friends or family members or even supportive coworkers that you could call and just share what's going on.

You don't want to do all that work of balancing yourself alone ... Bring your own support system into the situation. So bf will have you (and others hopefully) ... and you will have your own support crew.

I remember on the day of my ex's surgery for breast cancer, my brother came to town from 3 hours away or so ... and took me to dinner ... a really nice dinner ... across the street from the hospital. That dinner treat was just what I needed, though I wouldn't have been clear enough to ask for it.

Time to activate your social support network ... on your behalf! .. .and you use that support to stay balanced so that you can bf the kind of support and TLC you want to give. The new reality is that YOU along with bf ... are under enormous stress.

Time to burn up the phone lines ... I don't think writing on social media works for emergencies like this ... and actually ... this is a time when you want to call people and say IT'S URGENT. Emergency. I need to talk today. Tell people this is an emergency and they will clear out time! ... If you're calling across countries, you can use apps of course.

Tell the people you are calling because you trust their thinking and really like them ... and they will feel flattered. These calls can be where you process your fears in a raw way.

Again, my heart goes out for you.
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