We Talk Brain Tumours

Mary,

I’m surprised to hear how quick the hospital are arranging discharge. I think they do this sometimes on purpose ... and not give you the change of saying

‘Hang on a minute’ .... No, he’s not coming home until you’ve arranged x y z.

Hope I don’t upset the Mac Team (or anyone else) for telling you this , but I did something a bit unconventional.

I knew exactly what we needed for my husband at home... equipment etc. The hospital were giving me the run around... saying X not available... no funding for Y...

SOooo.... I rang Equipment Services (got the number from the Hospital switch board) and asked if XYZ was in stock.

To my horror I found out that the things the Hospital was saying out-of-stock, were available !!

All the Ward had to do was a ‘request form’. They had plenty of stock, none was reserved for someone else.... There was NO reason for the ward to refuse me/us.

Hospital was really miffed at my sneaky approach . I made a big fuss (politely) but I got my way.

Maybe it was because I went to print !! ... and e-mailed all of my husband’s Consultants...

Great advice from others ...

I found the District Nurse an angel... she had access to all kinds of information.

Hi Mary... Forgot to say... District Nurse can arranage to do a portable bladder scan. Then you can decide if pads, pull ups are the way to go. At one point they asked if I was OK at doing 'catheterisations' 2-3 x a day on my husband !! Husband said NO !!

You should get in touch with the Wheelchair Services Division, and get a measured for a permanent chair (even if you don't use it much). If your husband is sitting in a chair a lot .... it might me handy to get an 'air cushion' (plug in) type thing (nurse can arrange this).

Take care x

Thank you Lynda - all this stuff is new to me and I need deviousness lessions I think. Well, what I really need is to get my rear in gear and start fighting a bit more.

I really think they arranged fast-track discharge to get rid of me <s>. The ward he was on was understaffed and over-occupied. If I hadn't been there almost full time no-one would have helped Mac eat, or brought him a bedpan when needed. Although it was called a rehab ward, it was essentially geriatric, and the aim of the staff appeared to be to keep their charges quietly and weakly lying immobile. Most of them had no visitors. Mac has trouble chewing and swallowing, as half his face is paralysed, and no matter how often I requested soft food for him they would plop a tray on his table with stuff like lamb steak and stringy green beans on. How is someone essentially one-handed supposed to deal with that? Another poor guy on the ward has apparently lived on Ensure drinks for the past two years. His ex-wife did come in most days to visit him, and repeatedly told the staff that he didn't eat solid food, and yet every day they brought him a plate of dinner and occasionally tried to bully him into eating it. I intervened once and said I knew he's been prescribed Ensure, at which they propped a bottle of Ensure - without a straw - up on his chest and left him to it. Yesterday he had caught the flu. I don't think he will be leaving that hospital. He came in with a urine infection.

I'm so glad Mac is coming home.

Mary x

Hi Mary My husband was on a 'rehab (cr*p) ' ward too. Most of the staff were useless !!

Has your husband had a 'swallow assesment' from the speech / language therapists department?The Hospital really should check this before he comes home....

Try and get the District Nurse 'on your side' .... and get her to tell you EVERYTHING that is available.

I found out the hard way... unless you ask... you get nothing. The sad thing is... no one volunteers the things that are available .... how ridiculous is that?

Our DN even arranged for Chiropody home visits.

You could also arrange to have Macs prescriptions delivered to your home too. It saves going out .

Have you thought about bed rails (mini cot sides)? not sure if you need them....

Hope you have a happy (as it can be) Valentines Day.

Thanks again for the hints, Lynda.  A SALT therapist did make a very brief visit, at my insistence, on the ward. She suggested we fork-mash his food and take his pills in something thickish like yoghurt.  The yoghurt suggestion was good - the fork-mashing is a pretty useless suggestion when they are serving him up a lamb steak!

District nurse has just phoned to say she would come at 3. I am pinning my hopes on her that she will be able to point me in the right direction for my many queries! Mac is now in the discharge lounge at the hospital - they told me to wait at home for him as he wasn't using hospital transport, but specialised as he needed to be on a stretcher.  I would have liked to go in if only to have a search for his signet ring. I don't believe they looked properly, as they rang me to say they were sneding him home in hospital pjs as he had no clothes, when in fact he had jogging bottoms, t-shirt, fleece jacket and socks in his locker, as well as dressing gown and slippers.

I am thinking he might need cot sides. He actually doesn't move much, but it is feasible he could roll out by accident. I will speak to the nurse about that as well. For now I will move the sofa up next  to his bed at night!  Although he will probably be pinned firmly in place by three cats, who have missed him grievously and are delighted with his bed already.

My experience was mainly that things happened around us when they needed to.

As much as I wanted everything at once, I realised that everyone working around us were already incredibly busy at doing their job without me demanding even more of them. I was very mindful of the fact that I wanted them on my side and really didn't want them to feel under pressure in any way.

I did everything I could to learn from the professionals, learn how to care and how to look out for things.

Yes, prescriptions can be delivered, but this means that you'll need to get them ordered ahead of time (can be surprising how quickly some things run out).

For bedding, you should really be supplied with a proper hospital bed with an air matress, it's very doubtful that a "normal" bed would be appropriate for long periods in bed.

I'm not sure what the full situation is here, but things appear to be back to front in terms of discharge.  Normally, the home and care package is all set in place before a patient is sent home for palliative care.  In my mind, it's not appropriate for a patient to be sent home without the equipment in place and you knowing how to use it (or knowing who will be using it).

I hope things go smoothly for you today.

Dear Mary

just a quick one as know you will be busy.

Your hubby can get DLA on top of employment and support allowance. Its not means tested and usually your gp will fill in the form and send it off for you, fast tracked.

Hope all goes as smoothly as possible.

love jmd xxxxxx

It's only my opinion but........ Get as much equipment as possible. It's far easier to have equipment and not use, than to keep asking for 'thing after thing' ....

PLEASE put in writing ASAP the missing things ... ring, clothes... etc....

Ring the hospital switchboard, get the Consultants and Secretaries email address..... e-mail them both. Use the words TOTALLY UNACCEPTABLE at his Ward losing personal items.

You might like to ask the DN if she can arrange Home Assesments from the Community Occupational and Physiotherapy teams. Ours was called CNRT - Communiry Neurological Rehab Team.

Hope Mac enjoys his first night home with his 3 furry kitty-hot water bottles !

Take care x

Hi Cathi

Your story makes sad reading but how lovely that you managed to take your husband to Italy and how brave of you. I’m so pleased that you remember Mark the way he was and thank you for sharing that, this is worrying me, as I find myself getting a bit short-tempered some days and I don’t want our relationship as it is to overshadow all the wonderful times we’ve had.

Hi Mary

What a terrible delivery of prognosis from the Consultant, that’s shameful and totally unnecessary but I suppose it comes down to their personality, regardless of the job they do, some people are genuinely caring and others are not!

I hope your husband’s homecoming went smoothly and that he is comfortable.

Hi Pam

Thank you for your words of kindness and support. You are having a very rough ride and I say to you: Your strength is truly amazing, how do you do it? I hope I can be as brave and strong. I’m glad the personality changes have a least disappeared, but you have so much else to deal with xxx

My main concern just now is this ‘feeling/pain/obstruction’ Paul has in his stomach, which he is totally fixated with and is the only thing he’ll talk about but he can’t properly explain it. At first we thought it was nausea caused by current treatment, but we stopped the anti-sickness medication over a week ago, as he’s tried 3 different types and none made a difference. I am wondering: is it a sensation or imaginary, which is tumour related, is it an effect of radio/chemo, or is it another tumour relating to prostate cancer. The Consultant told us last Thursday that most people sail through this and those words keep ringing in my head because I’m thinking “well, why aren’t you” is it because it’s not working?

I wrote up to here to post yesterday but didn’t get around to it, as Paul was so anxious and uncomfortable that we dashed off to A&E at 6.30pm. At 12.30 we saw a doctor. After an x-ray, we were told that he thought it was tumour spread from prostate to liver and pancreas, causing the problem. We have never been told about this spread. We left the hospital at 3.30am being told to increase Oramorph. As you can imagine I was spitting feathers.

Saw the Specialist Registrar in Neuro-Oncology today, who thinks it’s an ulcerated stomach and oesophagus, due to dex and aggravated by chemo. I will speak to Oncologist Thursday about other.

Sorry this is mostly about me, I haven’t caught up on posts yet, but will do.

Virtual hugs and the cuppa were luuuuvvvvlllllyyyy Pam x

Towers of strength and kind wishes to you all

Kim xxx

Kim..Your posts should be about you. This is where you can cry rant and curse at the unfairness of it all. This is the only place where you will find time for you.

 It is so sad to see so many new passengers recently, but this seems to be the way  of this site. How we can be told that BT's are relatively rare, when we are all proof that they are not. Those of us on the other side of this journey know only too well the day to day hell that you are all going through and know that your posts are just the tip of what goes on in your lives. I used to think it was like trying to climb a mountain...holding on by your finger-nails , battling exhaustion.. never knowing when you would be swept off.

You are all amazing.

Pam..hope everything still peaceful..Naomi...hope you are resting while your Mum is away?

Julie..we miss you...  hope you get on line again soon. Debs..potatoes were great! 

Cathi x