hi guys as you know my partner has terminal cancer,well over the last couple of month Jim has been in and out of hospital with kidney pain, clots, can't pee then just blood comingts been horrendous for himn Sunday night I made him go back into hospital as he was screaming in agony with big clots coming out while going to the toilet after having 5 nights of agony he is being given dialysis.so tonight he was transferred to Hull he is very poorly now and he has lots of other things wrong with him he has a 50/50 chance of dieing. I have never seen Jim scream as much as these last few days. The fact I couldn't do anything except to hold his hand. Well I have been leaving the house at 5.30am and not getting back to my home until 5 pm for the past 5 days am absolutely exhausted ! I don't feel hungry so not having much to eat but rubbish. I want to eat something tasty but don't know what!I am aching all over and my shoulders are on fire all day constantly. I am seeing the consultant on 7 th November to hopefully give me some steroid. Injections. I was persuaded to go into work tomorrow for 4 hrs as they are short staffed. But I am so tired now. Well sorry to rant on,it's been a horrendous week worrying about Jim and work being so busyhank you for listening care take.
partner been transferred to castle hill in hull - NRAS
partner been transferred to castle hill in hull
oh darling. Lots of love. What an awful time you are having. Don’t forget to look after yourself. X
oh my goodness, you are going through such a horrendously difficult and stressful time. I'm so sorry to hear your partner is in so much pain too. I hope you can get the steroid boost to help you through. Please try and take care of yourself as much as you can. My heart goes out to you both xx
I don't know what to say other than my heart goes out to you. It's probably too late now but I would encourage you to refuse to work while you're going through all this if it's at all possible.
I'm so sorry to hear this Carol, you both are really going through such an awful nightmare. I understand that your work is short staffed at the moment but surely, under the circumstances, they would understand if you can't go in. Thinking of you both. xx
Gentle hugs. Treat yourself to anything you fancy to eat. You need the energy. Can you pop to the hospital cafeteria/restaurant and get something cooked? You are a very brave lady. X
I am so sorry to hear what you are having to cope with. All I can do is send my support, and best wishes. Do take care,hope you get your steroid jab, and you can find something easy and tasty to eat. You need to keep your strength up.
You are in my thoughts
I’m so sorry that you are both having such an awful time. I can imagine the long days you are having not to mention the early starts must be absolutely exhausting for you. Does the hospital have any relative’s accommodation that you could stay in overnight to give you a break - even if only for a couple of nights a week? Hopefully you can get something Nourishing to eat to keep your strength up and keep you going.
I can only figure that work have no real idea of how horrendous you are feeling with all this or they wouldn’t expect you to go in. (((Big hugs))) and you’re in all of our thoughts
Oh Carol. I’m so sorry to hear how Jim has further declined. I hope Hull can give him som relief from the pain. Does your gp do steroid injections? Mine does them in shoulders, knees, elbows and thumbs. I just wondered if a gp surgery could give you an earlier appointment.
Sending my sympathies and heartfelt good wishes for the strength to get through this. I'd be telling my bosses of (some) of my troubles and not taking overtime, putting some business M&S' way for tasty and easy meals and being as present and supportive of Jim as possible. You've got this 🤗
That’s a very idea - our local hospital has an M&S food store on their food court.
how awful for both of you.
Have you asked about pain relief or different pain relief ?
Is it possible you could get food from the hospital restaurant.
You could nip off when he’s getting treatment etc.
There’s an M N S in many hospitals.
You could either buy a sandwich or a ready meal for when you get home.it’s really important that you get some food,you can’t keep on running on empty.
Is there any hope you could get steroid sooner.
Try to look after yourself to help you cope xx
look after yourself and sending hugs x
sorry to hear your going through such a bad time. It is rather unfair of work contacting you to help out for staff shortage, if they are aware of the situation. Is it worth contacting GP for a sick note, most will sign you off with stress under these circumstances, or you could use your flare to justify your absence.
Most hospitals do provide overnight accommodation for relatives of very poorly patients, so it may be worth enquiring, and save you such early starts. You need to put yourself first, and don’t feel pressured to go into work. The idea of getting some M&S ready meals is a good one, to get some nutrients in you, to keep your strength up. Take care and sending hugs 🤗
Sending love and gentle hugs.
Sorry you are both going through all this. As many have said, ready meals are the way to go. I would try and focus on nutrients, so maybe an M&S soup or one of their balanced range.
When I was first poorly I used to treat myself to the salmon, broccoli & new potatoes one 😋 And maybe porridge for bfast to set you up for the day..
I would also get a sick note from your GP. This is a lot and you are getting yourself poorly. Take care x
Castle Hill is a wonderful hospital and will do all they can for him.My sister is being treated there and she says they are so wonderful.You need to take care of yourself too.I guess you can eat rubbish food for now as long as you are eating.Try popping into their restaurant/cafe while you are there too.Carers never look after theirselves enough then end up ill themselves.You need all your strength.Yes I think maybe your work are being unsympathetic. You must be exhausted with stress
Just to add to everyone else’s reply my thoughts for you and your husband. Hoping that his pain can be managed better and that you can take some rest. Many hospitals have a Maggies Centre or similar to offer care and a safe space for relatives
Sending you gentle hugs darling xxxxx
sending you gentle hugs. Do take care of yourself 🙂
what a truly awful time you are both going through. I can’t add any more to what’s already been said other than to say my thoughts are with you, sending very gentle hugs. xxx
Oh you poor things. My heart goes out to you. I can't imagine how awful that must be for your husband and for you not being able to help him. God bless you. I hope you both get some respite soon.
I went through all this when my husband was terminally ill, the hospital let me stay with him, even letting me use his shower room, but please look after yourself. My prayers are with you.🙏
Thinking of you Carol. Keeping in mind you need to take care of yourself, maybe an idea to decline extra shifts at this moment in time. I think it's a bit off for them to expect you to do them if I’m honest.
hey hun, praying for you both that God gives you lot strength to pass this hard time. RA always blooming when we are stress and worried. But sometimes life throws us this kind of challenges. Be strong and try to get some rest. This hard time will pass.
❤️
So sorry to hear about your husband I know what you’re going through My husband was diagnosed with terminal cancer in August and I wouldn’t wish this on my worst enemy I have Rheumatoid and Osteo Arthritis and for the past month I’ve been in agony I feel I’m having a flare up plus the stress had really got to me I was caring for him at home and if it hadn’t been for hospice nurses I don’t know where I would’ve been They came every morning to assist with his needs but apart from that we were on our own I was really struggling near the end ( but I would do it all again in a heartbeat) Sadly he passed away 3 weeks ago I know he’s at peace but I’m struggling to come to terms with it🥲 My prayers and thoughts are with you Take all the help you can Like yourself I see my consultant next month and like you I’m hoping for a steroid injection 🙏🙏
My condolences to you Mumcon.
Condolences Mumcon, that's really sad. xx
oh dear, so sorry to hear about your husband mumcon. He is not in castle hill now but in the royal instead. can't see him until Monday as his daughter is going tomorrow and his sister's have just come over from Scotland to visit today. Take care of yourself.
Thank you x
so sorry to hear about your partner. You must look after yourself to be strong for him too. Get some warm soup Covent Garden which is nutritious and quick to eat. God bless 💐
So sorry to hear of the tough time you and your partner are going through. Try and take a little more care of yourself nutrition wise but I realise it must be very difficult and you’ve put yourself on the back burner. Sending my best wishes that things improve for you.
My heart goes out to you Carol. You are doing your best and that's all anyone can do. But you must look after yourself too. You can only do so much and you are important too. Tell work how exhausted you are and that you would appreciate time off or you will end up being ill yourself. Let's face it your body is already telling you that. I'm in a similar situation as my husband is also very ill and I had this speech from one of my daughters yesterday (and I don't even go to work). I hope Jim improves. You are in my thoughts
im so sorry your husband is in so much pain, please try to look after yourself, you are having terrible long days, maybe your work could give you compationate leave under the circumstances, sending lots of love to you and your husband, thinking of you both
Omg this is such a lot to deal with, never mind about work you need to look after yourself and support your husband, sending you support and strength . X
your going through alot, as well trying your best for Jim. Please think of yourself as well, talk to your GP and and talk to your consultant they might be able to direct more help to you, if its in place the end of life can offer help. Rant and rave on here it helps and your not alone.
My thoughts are with you and your partner going through so much. Look after yourself
Aw, what an awful situation for your hubby and yourself. I agree with other people about trying to look after yourself - you need all the strength you can get by the sounds of it. Sending best wishes to you both.
i send you both all my best wishes, please take care of yourself and remember we are all here for you so you rant as much as you like
i am so sorry that you are having to endure so much. You can only do so much. Please try to take care of yourself. You are in my prayers. Hang in there girl. You got this. When things get too overwhelming, check in here and vent to us any time. Big hugs.
Dear Carolsos,
I am so sorry to hear of all the difficulties you and Jim are facing, and hope that things will improve soon for you both.
Please also check out our article on managing flares, which hopefully will give some helpful tips for while you are waiting on the steroids. You can access it here: nras.org.uk/resource/managi...
The charity Mind also have a lot of valuable support for mental health and wellbeing so may be worth connecting with: mind.org.uk/
Wishing you both all the best,
Hannah and everyone at NRAS.
So very sorry. Sending you lots of love and hugs. Xxx
I remember my mum being in hospital, terminally ill with cancer, and they had a Cancer Liason Nurse. I happened to visit when she was on the ward and it was so helpful. Perhaps you could ask the nurse in charge if they have someone similar you could talk to? She wasn't attached to one ward, but you could make an appointment to see her and discuss your husband's care. You can also ask to speak to the doctor in charge to discuss his pain management?
You need to look after yourself. Hospital chaplains will visit patients. Perhaps you could visit every other day .
Every hospital has a PALs - Patient Advice and Liaison Service - who you can talk to and might have some suggestions for making things easier for you.
Do take care xx
