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Bone mets - please join in

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Re: Bone mets - please join in

Saw this on another site this morning

 

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Re: Bone mets - please join in

Interesting about ports...they do dopower ports at my hospital, but mine was a rt mastec and Lymphoedema and so my guess is a port would be left side. I bottled out last time....but one day likely will need one....I seem prone to all sorts of infections so. Knowing too much, I'd worry about a port being a infection risk

 

the other thing is...local hosps near me - nurses etc not trained to use ports....and it's not a backwater!

 

recently was in with cellulitis and usual nightmare ensued re veins etc.

 

hey ho

Mx

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Nicky, You can see mine with some of my shirts. Mine is more of just a bump or small lump. Not real obvious. I don't mind it at all. It isn't a power point. My surgeon said the best place to place the port is the right side of chest bc it is straight up into the jugular vein. She said this place met site has the least problems.

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Hi FF, thanks for the info about the seat belts. To be honest I've got used to it over the 3-4 years I've had the port. What I haven't got used to though it its actual siting where it is very visible under my skin and therefore I have to really think about clothes, especially tops of any sort, before I buy them. It is so prominent and if I'd been asked I would have said for them to have moved it before they fixed it in place. If I go onto a hormone/tablet treatment I am going to ask for it to be removed as it will need flushing every so often which will be a bit annoying. I have asked before and I know if I wanted another one put in I could have it done on the other side and have a power port fitted instead so I could have the CT dye injected - that's usually another stressful time when they play hunt-the-vein! At the time I had mine fitted our local hospital didn't have anyone trained to do them so I had to go to another hospital who always use the larger, older type of port. Our local hospital now does fit them and uses a smaller port, but I'd need to check if it's a power port. Either way I know another time I would ask for it to be more hidden. It's currently so obvious the chemo nurses and I have a joke about it that it's like having a target painted to my chest! 

Hiwever I don't regret having one for one minute, life on IV treatment has been a breeze since I had it - relatively speaking of course 😉

Nicky xx

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AlexC., Please don't take this as being nosey. May I ask why they say there might not be a treatment for you?

This is your life and you need to fight for yourself and your babies! Do not let the drs push you around. Please get a second opinion! HUGS! FF

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Alexde, I live in the USA. They seem to give out more ports. I have had my port since March 2006! It is on my right side of chest. They flush it after they access it. If you are on an oral drug they like to flush it at 6 to 8 weeks. Mine works so well when not in use they flush it every 3 months. If you aren't good with needles they can give you Emla cream to put on to numb it. You need to put the cream on about 45 mins to an hour before so you are numb. With the port you can get your bath or shower with no problem. You can swim. Fight to get it!! FF

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 Nicky, Ask your car dealer ship if they have seatbelt extenders and explain about your port. Here in the US most places give them to you. This ma k rd the seat belt buckle in a different spot and the shoulder strap will move over some. Mine doesn't hit my port with this. You can also buy things to pad the shoulder strap. FF

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Hi Alex

Generally I'm doing OK. A few ups and downs in the past 12 months, mainly from getting a HER2 positive result from a biopsy and being treated as such. However on clodpser inspection of the FISH test (which is the more actuate one carried out of the original test inconclusive or weakly HER2) it was found out I was only just over the 'score' for what determines that you are HER2+. Currently waiting to probably start a trial based around hormone therapy having just completed 8 cycles of eribulin. Anyway, enough about me! Just to say if your veins are as shot to pieces as mine are then definitely consider having a port. I had one fitted a about 3 years ago when I started on Herceptin/Docetaxel/pertuzamab and it made the whole IV trearment so much quicker and none of the hunt-the-vein that all of us with lousy veins have to suffer. The chemo nurses also preferred it as it's quick to set up. And, unlike a PICC line it doesn't need flushing weekly and there's little risk of infection. In fact most of the time you don't even know it's there - just make sure it is fitted where you are comfortable - mine is pretty much right underneath where my seatbelt goes across my chest, something I hadn't even thought of when it was being fitted.

Good luck with Kadcyla and let's hope it knocks the little uggers for six

Nicky X 

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Hi Nicky

 

i remember you from years ago, I hope you are doing ok.  It’s nice to see a familiar name after such a long time.  You are correct I have got used to feeling well, seeing an onc every six months and having a small injection every 3 weeks.  The I/V is likely to be a problem as I have lymphodema in my left arm and my veins are shot with all the previous intravenous treatment, chemo and then herceptin.  I am going to see if I can get a port fitted.  

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Hi moijan

 

thanks for replying.  The onc did his best but was over-ruled by the MDT who insisted that NICE guidelines were followed to the letter.  Bizarrely my onc also works for NICE.  We did discuss getting a second opinion but I decided against it because another area will be governed by the same guidance.  I am going to leave going on a trial until later.  I am ok having Kadcyla I just wanted to save it until later.  

 

Alex

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Hi vercours

 

Thank you for responding.  It’s good to know someone else that is on the same drug.  I did find a Kadcyla thread on here but not been used for a while.  Like any chemo some people more side effects than others, however I have spoken to a chemo nurse and she told me that patients who had been on herceptin for a long while seem to tolerate Kadcyla better.  I can live with a week of feeling tired.  I have three mets in my bones two in my spine and one in my hip.  One of the areas in my spine showed a small amount of progression, I also have some pain in that area which is being controlled with naproxen.  I intend to continue with my dog agility classes😀

 

i have have my first Kadcyla this Friday. 

 

Alex

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hi alex 

i can not give any support as such as not in your position but guess someone on here will answer you,so hang on in there but what i can say is you will have wonderful support from all the ladies on here as they are  great bunch and wont let you down if they can help it,i dont visit the site a lot but always get aswers when i do ..

thinking of you and all my love 

reneexxxxxxxx

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Hi guys my name is Alex I'm new on the forum but I've been looking on here a while . Got consultant for me Thursday to be told there might be not any treatment for me I have a young family is there any else going through a similar thing X
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Hi Stripey, I seem to think/recall it has been done before....why not start a new thread with that as a title?

may make really good sense if the bc isn't anywhere else, have you had a Whole Body MRI?I recently was given one as apparently they are very (much more) accurate and then if it is true-then you are in a better place to decide...awful if you went through that and then they discovered it was also elsewherexx

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Hello stripey

Welcome back ..sorry haven't a clue about rib removal ...think I read in the olden days ...models had them removed to give them smaller waists !! Not much help am I?
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Re: Bone mets - please join in

2:32 PM
Hello all,
I haven’t posted for ages, just because I’ve been hectic with other stuff. Sending warm and gentle hugs to you all. I started to read through previous posts but I don’t think I have much I can add other than I really do empathise and send my very best thoughts. The unknown, the waiting, pain, sweats...! I’m sorry everyone who’s having a particularly tough time at the moment.
I’m really sorry to stomp in but in the very off chance...
I wondered if anyone has had or has heard of having a rib removed? My mets are only in one place at the moment (one of my ribs), I have a meeting with a surgeon on Wednesday who has suggested he cited remove the rib.
I had an unsuccessful biopsy a week or so ago (they couldn’t get samples because it was getting too close to puncturing my lung apparently).
I have no idea about this surgery and I can’t find a thing about it for secondary breast cancer anywhere.
Please don’t feel obliged to respond! I’m okay and I think other people on here at the mo need more support than I do. I’d just love to hear from anyone that has anything to say on this?!
Thanks all xxxx
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Chris, I'm sorry Ladybird is in so much pain. Hoping the doctors can get it under control for her and that it doesn't dope her up so much. Does heat help? 

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Hi Chris,

send Ladybird lots of love and hugs from us.xx and praying for a pain free few months for her

 

 

MoijanXx

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Re: Bone mets - please join in

Hi Chris,

send Ladybird lots of love and hugs from us.xx and praying for a pain free few months for her

 

 

Moijan😘

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Chris

Poor ladybird ...sending hugs that the morphine helps the pain ...
Xxxx🐞🐞🐞🐞
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Ladybird's had her morphine increased at the suggestion of the Macmillan nurse. I have to supplement her pain patch with a syringe of liquid morphine.
Early results appear to make her dopey...I hope this will improve as the pain is still troubling her.
Never a dull moment!
Chris(topher)
X
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Hi Jellytot, a few years back I had a brain MRI....was clear of cancer but showed some blocked tiny vessels.....as others have said...keep an open mind until the scan is properly assessed....might not be cancer, other things can cause lesions in the brain......try to keep an open mind, and also try to distance yourself a bit until you actually 'know' the score..... our minds[mine included!] are absolutely brilliant at focussing upon worst case scenarios [wcs] my mind has an honours degree in this and it's usually way off beam.

 

lots of love....try to focus on today nothing is changed from last month......until you are told otherwise.

 

 

Moijanxx👩

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Re: Bone mets - please join in

Hi Alex

 

just a thought here....I'm sure your onc is correct, they usually are, but have you sought another opinion? [blast this preemptive text] Maybe he explained why...you haven't elaborated ... but sometimes there are trial etc elsewhere that you could ask about? Why are you not able to retry herceptin if kadcyla stops being useful?

 

i am not on kadcyla so can't really answer your questions but there are threads re kadcyla elsewhere on the forum you could read, if no one here is on it.

 

All I'm saying really, is keep questioning, keep researching...your onc will understand.

 

Much love to you.

Moijan👩

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Jellytot

I just wanted to add my hugs to you . Like you I have only started the journey this year so we must take hope from others that we have lots of treatments. I seem to get low when I am alone or with my husband and kids I have a different face for my friends and at work but everyone is right in that we must enjoy normal and treat ourselves. Wishing you the best Wendy x
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Hi ladies

Lots to take in at the moment with many of you struggling.

Firstly Jellytot, it is no wonder you are all over the place. The jump straight into the menopause is bad enough (I remember it very well with my primary BC when my ovaries were shut down with Zoladex) let alone all the other anxieties you have, especially the 'abnormal' head scan. It doesn't help that you have to wait 2 weeks before you have an appointment to discuss further as no doubt you are full of questions. Can you bring this forward? Is there a BCN you can speak to and, as has been suggested, maybe the local support from a hospice or Macmillan nurse who can help. I'm sorry I'm not much help with this, other than understanding how awful the waiting can be, but just to let you know we are all here for you when you want to offload. As has also been suggested, if it does turn out you need trearment for brain mets, there is an active thread on here with ladies dealing with the types of treatments etc. 

Babsy, good to hear from you and that you have found your contented space, long may it continue for you and your family. Enjoy the sea air and getting out on the beach, all that ozone must be helping!

Alexde, welcome back. You've had a good long stint on Herceptin so the fear of the unknown won't be helping you! Kadcyla is a well tolerated chemo, there is a thread on here somewhere that you might want to find and read as there are a few ladies on it. I was on it last year when I had progression in my liver but as I turned out to only be very weakly HER2+ it wasn't effective for me. However when I used to have my chemo on the ward the lady next to me had been on it for a couple of years and other than feeling tired the day after the infusion she didn't suffer with any side effects. Hopefully it will work well for you as well. What you might find difficult to adapt to is having to go back to an IV drug, I hated it when I first came of hormone drugs, which of course you take yourself every day, and had to go to longer times on the ward.

Hi to all mets ladies, and gents, sorry if I've missed anyone's post or news. 

Nicky x

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Dear Jellytot

I'm so sorry to hear your news. It's a very difficult place to be in. Hearing there's something going on in your head is frightening. Does your hospital, Macmillan or local hospice {not just for the terminally ill) not have someone you can talk to? As the others have said, try to find nice things to distract  you and get you through the next couple of weeks and then you should be able to start moving forward with a new treatment plan.

big hugs Bon xx

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Jellytot, That is a long wait, but that gives your onc time to think things over and get more input from others! You certainly don't want the to rush. I think there is a brain mets thread on here if you feel the need to talk to those who know more. Also I think the American site bcmets.org has a brain mets section. I'm not saying you have them, but maybe you want to read up on treatments in case. I think if I was you I wou l hop in my car and go away for a few days. Spoil yourself! Sending more HUGS and squeezing tighter. FF

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Jellytot...........first of all I couldn't agree more with Carolyn. Don't feel you are in limbo. You are now in a bubble which could last 2 weeks. Try hard to have some good times while you are in this bubble. There is nothing you can do for now except worry, so put it to one side. There could well be more treatments ahead. Brain mets are a world on their own. I met a lady recently with unexpected brain mets. She was given this highly focused laser radiotherapy. Gamma knife I think it's called. There is whole brain radio and cyber knife. Also steroids are used successfully, as well as other meds. So wait and see. I am no expert, but do try to be optimistic. Your onc will be discussing your position with others in the meantime. Your scans will be studied by experienced radiologists. Don't get me wrong. I know you are in a hard place. But try to wait and see. Everyone here is waiting too, and thinking of you. You aren't alone. We are all rowing this boat together! Do drop by to tell us how you are.

 

Take care for now,

 

mo              xxxxx

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Oh jelly tot
I will be the first of many to reply ...I don't really know what to say but it's trial and error finding the right treatment plan and hopefully your oncologist will be doing that ....all the waiting around is the worse bit but try to focus on something nice in the meantime ...
Hugs xxx
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Hello All,

so first things first, I have been taken off the trial drug, apparently depression and suicidal thoughts are now a known side effect so they don’t want me on it any longer.

CT scan results weren’t reported on but the oncologist said from his untrained eye they didn’t look worse.

The scariest results however were those from the brain scan. It’s come back as "abnormal". The onc said they didn’t present as brain mets from breast cancer but there are "lesions". I am so scared. He wants a neurological specialist to look at the scan.

I have no idea how to process all of this. Firstly being off the trial, what the heck is my next plan, secondly if it is in my brain, how on earth do I deal with that. I feel in complete limbo. I have to wait 2 weeks for my next appointment. 

Beyond terrified xx

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I managed to lose a long post. Let s try again. 

 

Alex, 

I have been following this thread to almost 6 years but not posting very often. I get the email alerts daily. Ever since my secondary diagnosis I was on herceptin. Then in 2016 my CA153 started rising slowly and in the spring of this year they started to go up sharply. This is when my consultant said she wanted to get to the bottom of this. Scan showed the lymphatic system of my lungs was inflamed; the cancer was on the move. End of August I started Kadcyla and I am happy to report that after 3 treatments, the tumour markers have halved. 

As Kadcyla is basically herceptin with chemo, I was silently confident it was going to work. 

Kadcyla is a wonder drug. Apparently some ladies from the trial years ago are still on it. It was only made available on the NHS in July and before it was on the drugs fund. 

Like for Herceptin you will get regular heart echo. I am tired week one, and resume “normal” life week 2 and 3.

It is a targeted chemo, so no hair loss but chemo it is so immune system is weak. 

There are a few treatments available after Kadcyla. I have lost my list, if I find it I will post. 

My take on this is 5 1/2 on herceptin, I hope to get the same on Kadcyla, by then more treatments should be available. 

Xxx

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Alexde, Welcome back! I'm sorry but I only have one bone met and don't take anything for it. It's my lung mets we treat. Also I'm HER2-, so can't help there either. I can say I'm sure you have options and will hear from someone soon. It is usually quiet on the weekends. Hugs and good luck! FF

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Hi everyone, 

 

i checked in a couple of months ago having not been on this forum for a good few years.  After 9 years on herceptin and tamoxifen I have progression in my sacrum.  Had a blast of radiotherapy and this has helped with the pain.  The plan is that I am going to start Kadcyla and denosamub.  Is anyone else on this thread having Kadcyla as I would like to know how you have got on with the drug.  I would have preferred to have stayed on herceptin and added an AI or a chemo such as capecitabine.  Have been advised that this cannot be done due to funding and that I will not be able to back on a herceptin combo after Kadcyla stops working.  As a consecquence I feel that I have fewer options open to me.  

 

Alex

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Hi ,Ladybird, Jellytot and Babsy,

 

this  illness is such a bu*g*r! Isn't it?  Ladybird, haven't had your kind of pain, but I do get pain...was on a tube today, suddenly was reminded I have  rib mets....Have also had a strange pain down the front of my shin.....I even went to chat to the venous cons briefly this am in case it could be a new DVT which he said not. The pain is very real thou.  Jelly tot. I expect you've had your results by now, hopefully good ones? Again, I've been where you are, and Babsy, I can quite understand how much of a relief stopping treatment can be....Lots of ladies have mentioned this and there's a lot to be said for quality of life.

 

anxiety and depression and also sleeplessness are so common amongst us....Cancer does this...it is insidious, silent and very crafty...;...trouble is, the drugs do these as well

 

we can't prescribe or advise, but my go gave some amytriptiline tablets for sleeping and these seem to help.

i do hope your. Situations get better. Pdq

love,

 

 moijan👩‍⚕️

 

 

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Hi Ladybird. I hate being in pain and I’ve kicked and screamed with the medical staff to ensure that I’m not in pain cos it can make life intolerable. They’ve finally got the message. I’m on 30 mg of morphine capsule a day as well as a nerve blockers (cos of growth of bones putting pressure on nerves) and available liquid morphine that I can use as a top up. My life is SO different now, it’s amazing. So make sure you fine you find what works for you bEcause it is life changing both physically and mentally and such a relief for my family

Jellytot, sorry to hear you have been feeling so low xx it’s worth touching base on the forum as I always find that it helps helps my spirits. 

Im having a blood transfusion at the moment, which is taking forever!! However once it’s done to done for about another seven weeks. Mainly living at Seasalter at the moment. With my pain under control I am now able to go over to the beach etc, which I love. Have to remember not to overdo it. 

I’ve found complete freedom because all treatment has stopped. You’d think I’d be scared etc but it’s the complete opposite. I know it’s different for everyone but I’m just so grateful to feel the way that I do. I don’t even think about cancer very much hence why why I don’t come onto forum that often. I’m 

wishing you all well. I’m gonna try and get information leaflet done this afternnoon, so message me if you think o of anything that should be included. 

Babsy x

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Jellytot,  Don't you worry about what you posted! I'm glad you came on and let it all fly! Those night sweats are killers! For me it goes, I'm freezing, I'm sweating, I'm soaked from sweating, I'm cold now from being sweaty wet, out of bed to change PJ's, turn radio on, fall asleep for a bit, then repeat, repeat, repeat!!! Get up, have coffee and breakfast, then fall asleep in chair! 

 

I'm not up on anti-depressants. Maybe one of the other girls or the nurses might have a suggestion. Do you feel you have reason to be scared that the trial drugs might not be working? Did you ask for a brain scan or is it part of the trial?

 

You are smart to stay on top of all this! I'm praying for a break for you! I hope someone is going to your appointment for support.  BIG HUGS and wishes that I could change this!! FF

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Hello girls,

I haven’t been on for a very long time. I have been suffering very badly with depression and anxiety. I am trying desperately to find something I can take to help me whilst being on my trial. I have also been having some worrying side effects so I had a brain scan 2 Mondays ago, I also had a CT scan as part of my trial (3 month check), results tomorrow which I am very scared about.

I’ve also been suffering very badly with night sweats (and hot flushes to a lesser extent) which are stopping me sleeping, I probably get 3 hours a night now. I haven’t slept a night through since mid-July.

Sorry to return with such a morose post, it’s taken me a long time to be able to even write this xx

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Thanks Moijan and Carolyn

The Macmillan nurse is coming tomorrow to go through the options so we'll see if there's a magic pill!
Luv
Chris
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Hello Chris

Poor ladybird ..pain is horrible and makes life very miserable. Just wandering whether the rads maybe have increased the pain temporary and it will settle. ..I was told it can be 2/4 weeks after rads before they kick in.
Also, reading on the threads. .not from experience as I'm still a letrozole lady, but I think the buttocks injection Faslodex ladybird is having can cause a lot more bone pain too ...it's so unfair that something that is prescribed for bone mets can increase pain ..
I had a lot of bone pain a few weeks ago ..it's better now but just took a couple of paracetamol at night and a hot water bottle ...rubbed in ibuprofen gel too. I tried to ride the pain during the day by gently walking or focusing on a book or crossword rather than pop too many pain killers. ...I find ibuprofen very good for actual bone pain but please be careful as they can be quite dangerous. ..

Sending hugs to lovely ladybird xxxx
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Hi Chris

 

sorry you are in pain..xx do speak to the onc...they will try to get that sorted for you. I do have bone mets, but the lovely Carolyn is likely the best person to chat to about this as she, too, has been through several mills with her mets and likely needs pain killers sometimesxx

 

my love to you. By the way, I too am on the buttock injections, have had one dose which wasn't too painful so am praying they will continue to be similar and to do the job!

 

Moijan💚💚💚

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Poor Ladybird's in pain. The worst I've ever seen her with. She had a radio zap to the pelvis after Letrozole stopped working and she has been crippled with pain in hips and legs ever since. She goes for buttock injections again on Monday and Denosumab at the same time. Sounds like a fun day out!
Her leg pain is bad first thing in the morning and gets better as the paracetamol kicks in.
You are not alone!
Hugs
Chris.
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Glass of wine sounds good. Last year my kids took me to a wine pairing with chocolate! Couldn't go wrong on that one!

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Moijan

Thank u so much for being such a good friend and researching the Cadbury Flakes. ..but it must have been very hard to do and eat so many in the interest of "testing" ..... I think u will agree now that they don't taste so good as they used to ...I'm partial to a Twirl too but even they don't taste like they should ...bring back proper Cadbury choc ...

I'm afraid my taste buds now prefer Galaxy and Terrys choc ...but this morning only Rennie tablets are my best friend ...had 2 glasses of wine yesterday and I'm suffering ....maybe McDonalds will help! !! Ha ha ..self inflicted not looking for sympathy !!
Hope everyone had a lovely weekend xxxx
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Carolyn xx

Can’t recall which thread it was now, but regarding Cadbury’s flakes - I found some and carried out some research for you... Sainsbury’s sell a pack of 9, and also packs of small Twirls( 2in each). Twins are flakes covered in chocolate ....

Sadly I’ve had to chomp my way through about 5 flakes and 4 small packs of twirls...because I needed to make up my mind.........
The research was quite tedious (🤒😜🤡)
And unpleasant - but I’m happy to report the twirls do taste that little bit nicer Xx
Moijan( burp) oops....
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Hi girls! Thanks so much for the info! My spine looks like Swiss cheese according to my lovely husband 😉 Don’t know whether the denosumab and exemestane (now added everolimus) are doing their job until next ct in December...
have oopherectomy tomorrow and although feel calm, anxious at the same time! 😔
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Hi Avrelia, thanks for your message, have replied to you, hopefully I’ve done it right! x

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Hi Maria Louise

When I started on exemestane my onc said that it wouldn't start working for a month. (He said that because there had been a delay with scans and biopsies and he wanted to get me started on what he thought would be the right treatment but could stop it if it wasn't the right drug). I have now been on it for 2 years. Hopefully it is just starting to work for you.

Hugs Bon xx

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LOL ignore it then unless they reject it. Hate parking companies, they target the wardens with how many tickets they can issue so will issue tickets over the stupidest things. Good luck :-)
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Hello Kirky
It just says parking charges notice ...there is a photo of my car ...with my hubby sat in it ..I can see the ticket on windscreen and my Blue badge! We actually paid for 2 hours of parking and stayed 30 minutes !!
I smell a rat !!
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Hi Carolyn, parking company is legit. Does the notice say what the penalty is for? Overstaying, not displaying ticket or parking outside the limit of the bay? Unfortunately in private car parks the blue badge does not entitle you to any cancessions (though some landowners do give it). If they reject your appeal you can go to the ombudsman POPLA but as long as you've got proof that you submitted an appeal via the website and they don't reply don't pay anything till you've heard back from them.