More than overwhelmed and lost

I'm so sorry to read this. I can't offer you advice but i can emphasise because i feel as though i am having to make decisions alien to me as i am not a nurse either. We are also new to this journey as my husband was diagnosed in December and has just had round 1 of brutal chemo. The lack of communication between different departments at the Marsden and our local GP is driving me crazy. I have a full time job but spend most of my day sorting out hospital appointments, prescriptions etc etc. Plus our lovely dog knows his daddy is poorly so i'm sleeping on the sofa to stop him barking so my husband can rest at night. I understand the need to write things down - we're all in this together and i'm really sorry we are. xxx

So sorry to know you are sadly sharing this journey that none of us asked for. It is such an emotional rollercoaster and a full time job! I teach but I am taking time off at the moment to try and get things sorted at home. I miss my job and 'normal' life too. As the primary has yet to be identified - if ever- we are in limbo and on a strange route at the moment. I have district nurse OT and physio coming out tomorrow as his mobility is cmpormised from his oedema. I hope you husband recovers from his treatment and that it is of benefit to him. Thanks for you reply xx

Hi so sorry to hear of your struggles.my partner was diagnosed in December and  I am a nurse but medicine is so specialised these days (not my specialism) it really doesn’t help. Like you I have had to take time off to be there for him but I also really miss my work and because of covid have had to restrict my contact with others. I have no idea how to cope with this awful rollercoaster but I am going to do my best . Love to all here. 

It's so hard and after our experience of hepatic encephlopathy it is terrifying every time he seems out of it. My parents just witnessed me dealing with him in a poor state. Then some lights failed in the house and had to pay 150 quid to an emergency electrician! What a day. Hope you are doing ok Kimsw

Hi 

We are having a better day today. Tim Had appt yesterday which went quite well and going in for stent in lung next week which is but scarey but in good hands and should make future treatments  easier. The constant calls from different depts at the hospital are both reassuring and tiring. Never seem to get a break from it all. Took youngest grandchildren swimming which was a joy and am determined we will at least go out in car for a bit tomorrow. Hope you are all ok? Kim x

Also made decision to book a gardner! We have quite big garden and I just can’t face cutting all those hedges etc in spring and that’s supposing I would even find time to do it. This is me being kind to myself!! 

Hi Kim

That all sounds good and glad he is able to go out and about. I agree the constant organising is so exhausting.

Unfortunately our life is not going so well as husband was admitted due to very high potassium (8) at 1130pm Thursday via ambulance. I stayed with him for 12 hours and they had staterd to get it down. Also sorting renal function and blood sugar. He is very complicated as has liver disease and now cancer on top. The liver has growths but along with bones it is secondary. He wasn't wel enough to have his planned biopsy Wed to lry and locate the primary source. Therefore we haven't been able to get on a solid oncology path. It's all so hard.

Hi

that sounds really tough! How frustrating for you. Tim was/is alcoholic so also has long standing liver disease .although it has been stable for many years. He Is only 58 but also has vascular disease all caused by smoking .in the past. Cancer has come on top and underlying health issues have def worsened his prognosis and restricted treatment options. I am dreading him going in for this stent but he has to grasp anything he is offered. We know Tim has lung cancer but outlook is so poor I sometimes think we would be better not knowing. His treatment plan is to extend life as much as possible but had to stop radiotherapy after one treatment due to collapsed lung hence stent. I hope you aren’t too lonely while hubby in hospital? It sounds daft but in my job, when patient needs hospital care, we tell carers to please make most of the break and catch up with your own well being while loved one is being cared fir. Try and do at least one kindness fir yourself . You deserve it ! Kim x

Hi Kim

Thank you for the reply and actually I know it sounds bad but it's good to speak to someone who understands the liver issues due to alcohol. That's my hubby too - diagnosed 2.5 years ago and was doing relatively ok. He is only 52. The cancer is on top for him too and the liver issues are compounding it all. The oedema in his legs is terrible and affects his movement. But he is a fighter and keeps walking. He has the cancer extensively in his bones and just found it is in his sternum. We know its not curable and treatment would be only to extend life but yet to get on a plan as they had wanted to find the primary. So that makes it really difficult as feel so in limbo. I'm the one who organises and its hard to reliquish control as so many things needed for his comfort. I am going to take the advice to look after me whilst he's in hospital. I'll feel better when he can phone me himself and we can communicate again.

So glad your partner can get some knid of treatment and that you can still make memories.  My son (23) and his girlfriend live with us so I have people here to support me as well as incredible parents, brother, sister in law and friends. I have myself some healthy food and will get a good sleep tonight afer a night awake in A&E. Also i don't need to worry he's okay sleeping downstairs.

Take care and thanks for the message

Karen

Hi Karen.

just checking in to see how things are with you? We had a rough couple of weeks with an admission for a few days . Tim home now and due to start radiotherapy agsin on Tuesday but we had a call yesterday to say consultant wants to see him tomorrow so not counting any chickens! Hope you doing ok Kim