Tuesday, December 15, 2015

Advent sock day 15

A frustrating time at the hospital today.  FL said he had been taken for "a heart test" at the time when his breakfast was delivered, so he didn't get to eat.  He doesn't know what sort of test it was, or why he was having it.
He had just been taken back to the ward, and started to try to get dressed for the day, when another porter turned up to take him for radiotherapy.  
I have always listened and spoken for him at radiotherapy as he doesn't understand what it is all about and can't hear them properly. Without me, he was lost, and told the doctor his only pain was from shingles.  She said radiotherapy would not help that, so sent him back to the ward without any treatment. 
I am really really angry about this.
He was still in his pyjamas when I got there at 1pm.  He was exhausted and knocked over his jug of water when he saw me.  He called for an extra painkiller then fell asleep halfway through his lunch and slept until 3.30, when he called for another painkiller.
The nurse who came with it started asking about him going home.  She wanted to know who I was and I said I was his wife.  "Oh - and how long have you been married?"  She didn't ask in a nice way - I felt like I was being accused of being some sort of a floozy, picking up a sick old man.  I said "eleven years."  I don't think she believed me.  It has only been 8 "married" years but we have lived together for 11.  And what does it matter anyway?  Even if it had only been 5 minutes, we are not trying to cheat the NHS out of a bed space!
I said I work full time and he will need support to be at home.  She said something vague about Social Services, but I don't trust her to do anything.
So tomorrow I have made an appointment to see the Macmillan nurse to get some proper help, support and truth.  Not to mention Radiotherapy.
I left FL sleeping again.  I have taken him the Kex blanket I knitted.  At least I can be sure he will be warm tonight.


Let's continue and knit 15 rows to sock B. Choose the colour of the day from a childhood favourite book and choose the pattern as you like.

It is a symptom of my own tiredness that today I picked up the wrong sock and knitted 15 rows on it.

It doesn't really matter.  As long as I remember to make them both the same length by the end!

I instantly thought of Pippi Longstocking, and used yarn left from my own pair of long stockings :)





28 comments:

HappyAcademicRunner said...

It doesn't sound like they've got their act together at the Hospital at all. You've every right to be fuming. Hope the MacMillan nurse is helpful. When I was in hospital ( the one next door!) One nurse was so rude I broke down. The other patients had to get another midwife in to check I was okay. I know they are understaffed but there is no excuse for rudeness like you encountered today. Xx

Athene said...

Oh Roo - I'm speechless, how could they send him to radiotherapy without anyone knowing why he was meant to be going there?
I love the NHS but stories like this are sadly all too common, no joined-up care. And poor FL with no breakfast and not able to get dressed.
I won't even comment on the nurse's attitude.
Keep fighting, and I hope the Macmillan nurse can help you.

Jenny Larking said...

This makes me so mad but sadly is very common. I always had to accompany my mother to her appointments and get into the hospital when she was due to see a consultant or have treatment, because the medical staff don't seem to make allowances for lay people. She couldn't remember everything they used to fire at her and it wasn't because she was stupid but because they either treat you like a child or assume you hear and understand everything. My mother didn't like to interrupt or ask questions and didn't always know what to ask. Honestly, did they not have your husband's notes with him and a nurse should have stayed with him too. Is there nobody else who might deputise for you occasionally when you have to work, who has a good up to date knowledge of his illness? Hope he has a restful, warm night.

Liz said...

Bloody hell! I'm really angry on your's and FL's behalf. How utterly frustrating for you. It's surely not up to the nurse to be querying when FL is to go home anyway.

The care in this country for people who are suffering from long deterioration of health is just appalling at times. Before her death my mother in law suffered from a whole catalogue of health problems, including dementia, collapsed discs, probable cancer, but there was just no support or help from the health service and her care fell almost entirely on my sister in law and now there is a similar problem with my father in law who is nearly blind due to macular degeneration. It would be useful to have the equivalent of Macmillan nurses for all diseases, especially dementia, as they were one of the few people available to turn to.

Thinking of you.

from103 said...

Thinking of you and FL. Good plan to involve Macmillan nurses- they can be very helpful. Feel annoyed that you have been treated this way, Sx

Cherie said...

Roo, let all of us fume on your behalf so you can remain mindful. Gaah, that was horrid. I hope you called all of them to task. They surely needed it! You can be majorly assertive now. Go for it!

poppyinstitches said...

Sometimes the NHS just leaves us wanting to scream. The Macmillan nurses are amazing and can help with so much, so wish I could help - thinking of you xx

jessica said...

Oh gosh~ this sounds like a really hard + frustrating day, it's really frustrating how it often takes a strong advocate who has 24/7 vigilance just to make sure that the patient gets what they need! It's just not good for anybody. I think that if we could all reach out and strangle that nurse for you, we would. I'm sure FL loves having the Kex blanket - for warmth but also because it'll make the hospital room just very slightly more home-y. Good thinking :-).

I meant to comment on your last post in time, too, that it must be disappointing for FL to not be able to go home as soon as he wants, but it would be doubly frustrating if he goes home before he's ready and then has to make a return trip. You've absolutely got things right. I hope they can get him into physiotherapy - if it's like physical therapy/occupational therapy in the states (I'm thinking it must be), they can do wonders for helping him be more mobile and adept at navigating the house and doing all the self-care things that he wants/needs (like getting to the toilet and being able to warm up food, etc.), which is really important for him to stay there safely and comfortably. It's hard, though, I remember my grandmother always had a difficult time accepting what her "new normal" was (and often didn't, to sad results).

Hugs to both of you.

Jodie said...

Well hell - that sounds like a terrible day. I had to Google MacMillan nurses - this is what Google said, BTW; Macmillan Nurses are qualified nurses with specialist qualifications and skills in cancer care. Their role is to support patients and their families through diagnosis and treatment. They also advise on aspects of care when treatment is for comfort and not cure, which is known as palliative care.
I think they sound like a good choice in the situation. Just remember to not feel guilty for not being there. You have a life that needs tending (home, work, dog) and if someone doesn't have a brain to double check on things (like the Radiotherapy person) it's on them not you. I hope for a better day for you both for tomorrow.

MaryinTN said...

Sounds perfectly horrible. Very sorry FL and you were treated that way. What a rude lady and to think she's a nurse. Huggs

SewTypical said...

So sorry for all the hospital messups. I experienced the same thing when my ex-boyfriend had Cancer. It's so frustrating on top of the heartache of what you're going through.

Now that nurse is Such a Bitch! (On the other hand, it's sort of nice to be mistaken for a floozie, no?)

Miss said...

Oh Roo, so sorry you and FL went through such a frustrating day, when things are already too tough. The system is incompetent, to the point of negligence sometimes. And no one wants to know. All these experiences add up to crappy health care.

Thinking of you both x

Saffi said...

Ugh. So frustrating for you both. I hope the Macmillan nurses help to pull the strands together.

Saffi said...

Ugh. So frustrating for you both. I hope the Macmillan nurses help to pull the strands together.

zangmo said...

you and FL were treated shockingly. I get so frustrated when I hear stories of how the NHS is and how it is treating people. Keep a diary and don't be afraid to raise any mistreatment to senior staff. I will continue to hold you both in my thoughts and if there is anything I can do then let me know. I work at Whitemyres Avenue just off the lang stracht. I finish up on Friday for 2 weeks and could easily meet up with you for a coffee. My email address is sus1200@btopenworld.com. Sus x

Roobeedoo said...

Sus that is very kind of you - here's hoping he gets out soon so I don't need to take you up on it!

Laura said...

Oh good grief, did the radio therapist think he'd just rocked up there for the fun of it? You'd think they'd check :/ so ridiculous, and I hope the Macmillan nurse can help you staraighten things out. Here's to a better day, and awesome socks regardless of where the stripes are xxx

annieloveslinen said...

Choose your battles Roo, you have enough to contend with, rudeness is prevanant in society these days - or maybe I'm getting old. Whatever. Try to give her the benefit of doubt, be manganous and not give it any more of your attention. Your emotions are heightened just now and you will hear implied criticism if that in any way echoes how you feel about what you are unable to provide. For what it's worth, you're doing fine. Keep knitting.

Judy said...

Hi Roo. So sorry to hear of your frustrations and anger yesterday. I totally understand your feelings when questioned about your age difference as I experience exactly the same. Please contact the PALS at the hospital as soon as you can and report yesterday's events to them. Any receptionist will be able to help you contact them. They are the patient advice and liaison service and I have found them to be very helpful. Sending all my love and gentle hugs to the both of you.

Miss Norm said...

Roo I am truly sorry, you have enough to deal with without that crap. I remember a midwife asking me when I was pregnant for the second time, if it was the same Father as the first, I replied I was not sure (cheeky mare) !!!

I have not read the other comments Roo, but start at the top to complain, I had issues when my Mum was has Chemo, I marched into the office of the CEO made my feelings known, marched out feeling proud as I had not cried, looked down I had the label still hanging from my new cardigan.

Keep strong Roo, FL is a gift in your life, and I am sure all your blogging fans could gather descend on the hopital to sort them out, KNITTING NEEDLES in out hands !!

Much love xx

Mairead Hardy said...

Oh Roo, after the previous couple of days' more positive posts it was heartbreaking to read today's. What an utter stupid bitch that nurse is, but karma will get her one way or another. Macmillan nurses are just what you need, such a wonderful service. Sending you love and hugs.

Unknown said...

I am so sorry you have experienced this. You have been such a stalwart, and you don't deserve it. I have been reading your knitting and sewing adventures for a long time. My heart goes out to you and FL, and I agree with your OP who said choose your battles. Find out who the positive people are in your current situation, and try to go through them whenever possible. I know help is hard to find in these circumstances, I have been through it myself with my in-laws both of whom had a sad time of it. Can you get it added to FL's notes that you must be present for investigations? That would help. Also his difficulty with hearing. PALS are helpful for practical concerns.

I love your socks. Very best wishes to you both. Regards, Trish

stripeybea said...

Firstly so sorry you're having a grim time, as a nurse and someone who went through this earlier this year with my father my heart goes out to you.

Some alarm bells ringing just reading your posts - when you visit ask if they have done a "section 2 referral " this means they have asked for the social worker to come and see him, ask to be present when she/he visits your husband to talk about help at home. Ask for their name (he will have been allocated someone)!and you can always ring them as well. The Macmillan nurse may also be able to help with help and care at home.

Has he been seen by the Occupational Therapy team? They will help with any equipment you may need and these can be supplied by the Red Cross (well they are here). Sometimes something simple such as a raised toilet seat with handles so you can get up more easily, a handle at the side of the bed to help getting out, a perching stool for the bathroom, a copy mattress or cushion for the chair, all these can make such a big difference.

Has he been seen by the dietician if his diet is poor? They will have done an assessment on admission but it may be worth enquiringly if he is not eating most of his meals. They can offer advice and prescribe supplements etc.

The Patients Experience Team or PALs are always there to help and direct for advice too

Hope that helps!
X

Roobeedoo said...

Stripeybea - thank you for giving me the"magic words" re social services I know how important it is to get the language right to ensure action! As FL said yesterday it's like going camping for the first time and not knowing how anything works. At some point the tent WILL fall down!

Sarahel said...

I'm speechless. Both about the way radiotherapy treated FL, and the extraordinary conversation with the nurse. So glad others have really useful advice to offer. Hope today is a better day.XO

lilysgrannie said...

Oh dear, I hope you both have a better day today. You've been given good advice here to work within your healthcare system and hopefully some changes will happen. Be strong and don't let people like that nurse wear you down because FL needs you to be his advocate. Thinking you should keep on knitting!

Lizzi said...

Keep your chin up - I know this is very difficult

From where I am sitting you are doing just great.

TempestKnits said...

Dear Ruth. My husband and I have both read your post today and our hearts are aching because this is almost a carbon copy of how my Father was treated last year. He was in hospital in England so it is safe to say that the rot is just about everywhere in the NHS. I also had some very alarming and upsetting experiences during my hospitalisation for surgery in April this year here in Scotland. My husband and I have made a pact together that neither of us will see a Consultant without the other. It's not because we are in any way feeble, but because we feel safer by doing this. Please DO contact the MacMillan nurse as soon as you can - our experiences of them have always been wonderful. They offer a real beacon of help and support and I am absolutely sure will be able to support both of you, because as strong as I know you are from reading your writings, you deserve help and support at this very hard time. Your love and care for FL shines through in your words, but you need someone to be there for YOU. Please take care and know that we are thinking of you both.