More than overwhelmed and lost

Hi Kim

Been a whirlwind here hence the late reply. How did Tim get on with the consultant? Adrian was moved to a hospice on Wed for pain management and to assess his care needs. All so difficult, I have been our lcoal Maggie's centre today and they were supportive. Do hope things are going as well as they can

Karen x

Hi Karen, 

So glad you are getting good support. I have t been to our Maggies in Cambridge yet but will def pop in. Tims review with consultant was ok. She has started him on steroids as precaution against any further lung collapse etc and he has restarted radiotherapy but everyday feels like a knife edge  of something going wrong again. I jump every time the phone rings or he gets an email appointment. It’s crazy worrying but what can you do! He review with hepatology consultant and so far liver doing ok. He doesn’t have any pain yet but I am probably getting on his nerves by keep checking! Keep in touch if you can and am here if you need chat .

take care Kim  

Good to hear from you. Yes it's the daily and constant rollercoaster I can't deal with along with the not knowing what's ahead. For instance who knew you could get and would get extreme lymphdoema in the groin?? Adrian is on a syringe driver of alfentanyl.currently but hospice hope to swap to patches once the level is stabilised. He had pain in his bones as for the cancer there as well as liver and lymph nodes. Just arrived at hospice and braving myself as usual ! He said earlier he didn't feel well. Speak soon and please do keep in touch as I find it invaluable support x

Chin up and best foot forward. Sending positive vibes ! Am here if you need it! Kim x

Thank you. At hospice but he's asleep. I feel.lime we've been dropped in some movie and are playing catch up on the plot! It's like we don't have all the info we need. Maybe that's just me!! You take care too. Are.you still working? I'm on sick.leavw current from my.teaching job.

Take care 

Karen

Hi

i know exactly begat you mean. I watch everyone’s eyes or face fir clues about the real plot or to try and work out what they are not telling us but as a nurse I know that’s not how it works these days and patients are totally involved in their own care. I guess I just don’t trust the system like I should and sometimes the team caring for you just aren’t sure what’s next either! I am not working at the moment because I just couldn’t do it all. My GP has signed me off on carers leave but am going to have to extend because of delays in Tims treatment. We are going for radiotherapy every day fir the next four weeks. Had long chat with my manager today and all good. She is also a good pal and I supported her through her breast cancer five years ago so she really gets this, which is lucky fir me. I hope Adrian perks up soon. Prob medication knocking him out so will settle once stabilised. Tim is opposite at moment as steroids have pumped him up so all chores done without me moaning! You take care of yourself and REST  when you can. Kim x

Just checking in to see how you are doing. Hoping to get Adrian home soon but that is also terrifying as no idea how to cope with that especially as he is now dealing with lymphodema in legs tummy and groin. Legs are weeping and so is his groin which is ten time the size it all should be and no-one sems to be able to give us any help or advice. It's desperate for him as things get wet. It's also meant his mobility is severely compromised so I think any hope we had of taking home out occasionally when he gets home is remote. If you know anyone in the profession whi has heard of this or can help I'd appreciate it. I've had covid since alst week too as as our 23 year old son with Crohns who lives at home so a scary time - starting to feel a little better and hope to test negative soon as I cna't visit the hospice. Take care K x

Hi Karen, 

poor you! You have had a rough time of it! We are still in same place. Steroids seem to be holding things steady for now and Tim has definitely been given a boost by them but dose now reducing with view to stop as no good long term. Radiotherapy fir another two weeks if all goes to plan. I dint have anything clever to suggest re lymphoedema . It is usually managed with compression garments and maybe a special type of massage which patients are taught to do themselves . I am sure this is something the hospice must manage so maybe they will give you tips? (The t’s &c’s on this site don’t allow me to advise any further) 
Tims mobility has been compromised since a six week coma (due to complications re alcoholism) 15 years ago. It deteriorated further with vascular issues in the last five years . He used to need a wheelchair if we were going to walk any distance but then we bought a really lightweight trendy looking mobility scooter which we chuck kn back of car and has been a life saver ,allowing us to get out and about easily. You can hire these things to try so don’t give up on getting Adrian out. Where there’s a will there’s a way! 
Glad you are feeling better and fingers crossed for a negative test! Keep in touch  Kim x