Well you certainly made me laugh Chris. It’s a good attitude to have. I’m usually the same but it’s still a little raw at the moment with everything coming as a shock and happening so quickly.
I hope you enjoy your time away … you definitely deserve some down time.
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I know how it must be so soon after getting such a diagnosis and for us it wasn’t as bad, either with the stroke or the cancer. His stroke was bad but he seemed to start to improve and the outlook looked good (other than knowing we’d have to closed the business and see how he recovered. My plan was to get a part-time job once he was well enough to be left for half days… Oops how did that work out? It didn’t!! Prostate Cancer wasn’t a great surprise which is why I was able to lighten the mood a bit. My big fear was that he had addition pain which meant it could have spread which would have been VERY bad. However, scans showed it hadn’t so we could be grateful for that.
I am SO looking forward to the break as I am completely exhausted having had just one night away from him in 2 1/2 years and that wasn’t a proper “break” as I was dashing to Cornwall and back. It is going to be SO different only having to think about me and Buster!
Huggz
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I found stairs a nightmare during treatment. Even before I started getting sore joints and toes, the amount of effort needed to go up even a couple was astonishing, and my balance was bad. I did end up walking with a stick for a while, as it helped my balance and gave me confidence overall. Moving even for short bursts stopped the stiffness getting too bad.
I know you will feel overwhelmed with all you need to do, and all you feel you should do, but always factor in some rest time for yourself. Stress is exhausting, so give yourself more recharge time. My disabled partner sleeps a lot anyway, but when I was falling asleep listening to mindfulness or meditation tacks, he would join me. It was nice/reassuring knowing he was right there too. Plus I didn’t feel guilty that I was lying there doing nothing (except undergo cancer treatment), when there was so much needing done
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I had knee replacements after a car accident, one at a time. Before surgery I had to climb stairs on all fours, ie crawling. Before discharge I had to learn how to climb stairs with crutches. Easy to learn with someone explaining it. Bet ween the operations my son converted my garage into a bedroom.
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She’s back in hospital. Went in as an emergency on Sunday morning.
I’m finding it very frustrating that we just don’t have enough information as to what’s going on.
They want to do another biopsy as they say they didn’t get enough cells from the first one. Still no discussion with an oncologist. I’ve tried speaking to MacMillan. I just don’t where to go for a better understanding of what’s going on with her and what the next steps are. She was diagnosed on March 21st. She’s had 15 days of radiation but we still don’t know what type of lung cancer or what the next steps are. We don’t even know the name of the constant. It’s all very frustrating
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Insist on asking which consultant is managing her care.someone has to be ordering her treatment and managing her care.
Talk to the PALS service, if the hospital has one. They can help to get you some answers.
Lisa, I’m so sorry to read this. You must be desperately worried after the fall and then emergency admission. Do either of you have any local family you can turn to?
BB and Charles have given good advice in order for you to get information.
Don’t let the Ward or Hospital in general fob you off. I have had that with silly idiots and once asked in a loud voice “do you ask everyone to bring in a Marriage Certificate to prove they are the spouse of one of your patients? I didn’t think so - so why are you being obstructive to me!!” Unless SHE states she does not want you given information you have a right to know as her NOK.
As for not being told the name of the Consultant - WHAAAAT ?
Thoughts and prayers are with you. 
Is your partner in a specialist ward or the one which is like a “holding bay” for patients who might be discharged quickly, might be called an “Assessment Ward”? My mum was in one and I was dismayed at the lack of privacy and dignity. It was desperately busy, should have been called the Piccadilly Circus Ward!! After that experience, after a TIA, mum said she never EVER wanted to go to Royal Bournemouth Hospital again. The nursing home said they could cope with whatever happened to her subsequently, except for uncontrolled bleeding. In a “normal” ward, very often the name of the consultant is written on the whiteboard above the bed, which also has the patients name. Has a dedicated “key” nurse been appointed, been in touch with you? Is your wife’s usual consultant even aware she is in hospital now?
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She’s in the Medical Emergency Assessment Unit at the moment. Being treated for the admission cause which is the infection.
MacMillan have said she isn’t coming home until they source a bed for her at home. She’s had another scan today.
They just keep telling us that once they do the second biopsy and get the results of that, then they will call us in for the chat with oncology team.
It’s just frustrating that we don’t yet know the treatment plan beyond the radiation she’s already had.
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It’s impossible to relax when you are “in limbo, just waiting”. So many people think you can relax when a loved one is in hospital…In fact it’s so much worse!
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Oh @bowlingbun G has been on Medical Assessment Units three times and each time it has been a nightmare - sorry Lisa, don’t mean to scare you! No privacy. In fact one day when I went to visit him and nurses were shouting at two others on the ward who were deaf, he asked me to pull the curtains - within minutes a nurse was shouting at him that they had to BE ABLE TO SEE YOU - LEAVE THE CURTAINS ALONE. I was so shocked I couldn’t say anything. On another visit G could not get any rest because he was near the Nurses Station and they were clattering away on keyboards all night and talking to each other.
I also have to agree that having a loved on in hospital is more tiring than caring for them at home - the anxiety levels are through the roof; the travelling (trying to find somewhere to park and get into the building); trying to remember to eat - when you don’t feel like eating; remembering to take in things he/she asked for!!! Then running the home and keeping your own life ticking over… Never any support when THAT is when you really need some help. I find I can’t sleep when G is in hospital!
I took great care to make sure mum had plenty of clean fresh nightdresses. One nurse had just shoved all the soiled nighties in the same bag!
@bowlingbun…I also had that happen a lot with Phil during his long hospital stay.
We had a consultation with the Oncologist yesterday. She has stage 4 lung cancer that has now spread to her bones and perhaps her liver and/or kidneys. There is a treatment program but at the moment she is not well enough to start any kind of chemotherapy. She is trying to fight off this infection. The Oncologist ordered another MRI Scan for her brain to see if the cancer has travelled there. Previously they said it hadn’t but I guess things change so quickly.
Whilst she isnt well enough for treatment, the cancer is just spreading. Oh and the treatment, whatever that looks like, may not or most definitely will not work, it will just buy time.
They need two additional bio-markers hence another biopsy early next week.
We are a little dazed to say the least right now.
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I’m very sorry to hear this.
Ask the consultant to make a referral for NHS Continuing Healthcare. Extra care free when you need it.
I’m very sorry to see your latest update, not what you want to be told. Remember you can contact MacMillan and Maggies for support, they can be very helpful to talk to.
Yes we are in touch with MacMillan and they’ve been helpful.
It’s just a lot right now.
@LisaP
Sending hugs to you. ((())).
Being in limbo is awful
Lisa, so very sorry to read the above. I feared from what you had said that things were heading that way.
Just grab as much help as is available and make sure YOU get support as well. That IS available for you and not just your wife.
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