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[Lynne888]

Yes I can go at short notice if a cancellation comes up.. I shall ring later if there is no appointment in the post. 

Agree coldethyl about people you barely know wanting to know all the details!  A new woman moved in over the road from me in October.  She actually came over for the first time while I was in the middle of my first Prep  I had to tell her I was doing the prep because I didn't want her in the house!  She then asked me everything and said 'is it cancer'.. I really took a dislike to her. I just kept thinking, I don't know who you are but you want my life story'!!!!!

[babyjane]

People don't know how to react, don't know what to say so they think they can say the first thing that comes into their head.  It's the same with a bereavement.

thank you for these recent comments from your own points of view.  A neighbour stopped me in the street yesterday to tell me her husband has been diagnosed with lung cancer.  I just listened as that's all she wanted from me.

[Kathleen]

Hello ladies.

Just catching up with this thread and wanted to send hugs to you Lynne88 and the other ladies who are having treatment.

I think our sensitivities change over time. When my neighbour was first diagnosed with bowel cancer she told me while we were standing in the street and as I was shocked and saddened to hear her news I welled up a bit. She sternly told me to stop that as " there had been enough tears". Now she readily talks about her illness and the treatment she had. I assume she is more relaxed because it is in her past and she isn't dealing with it every day, plus of course she is now fully recovered and feeling well. All any of us can do is be kind and caring to each other and if we do say the wrong thing we can always apologise and start again!

Take care all.

K.

[Tempest]

Love Marras's comment and the phrase 'positivity bullies'. My Mum lost the plot over this very thing! I won't tell you exactly what she said to one nurse who kept chiming on at her, as it was a bit sweary! My Mum WAS positive, but wasn't prepared to put up with glib comments from other's who hadn't walked even an inch in her shoes.

Sending much love to you, Lynne (and of course you, Marras and Coldethyl). xxxxx

 

[Lynne888]

Things are going very slowly since being told I had cancer on 2nd February.  I went for the MRI and managed to do it this time. I was expecting a phone call the following week calling me in to see the consultant.. that's how it's worked up until now anyway.  The call didn't come so I rang the cancer nurses and they said the MRI scans hadn't come back yet.  They said they would chase it up and I would definitely be on the list the following week.  I waited yesterday for the call. It's not easy because for a day or so beforehand it's easy to imagine every scenario known to man and believe me , I DO imagine them all.  Anyway, the call didn't come again. I rang the nurses at about 4.30PM saying that I was expecting a call only to be told that my case hadn't been discussed again and that the MRI scans are often passed to outside agencies to be assessed and mine hadn't come back.. they didn't even know where they were.  I'm not going to lie, I feel very let down with the whole situation from my GP not taking it seriously and waiting 6 months to see anyone after having blood in my poo to being told in November I DIDNT have cancer only to be told in February that I did.  I'm finding it all a bit much at the moment and I keep thinking that things could be getting worse with all this waiting around. Anyway, I await another call today but it won't be to see anyone as they only have the meetings every Wednesday so it will be at least another week before I get to see the consultant again

[Annie0710]

I'm not surprised you feel let down Lynne, this is AWFUL.  Being told you have cancer is everyone's worst fear and then to leave you hanging like this is well..... beyond words

And also given the long wait for the tests in the first place byvthe gp then the wrong diagnosis I'm gobsmacked I really am

Can you complain ? PALS are apparently good at hearing your concerns too.  I hope they step up theirs patient care with you pretty sharpish to a level you so deserve

Big hugs xxxx

[Lynne888]

I'm reluctant to complain at the moment because I don't want to pee anyone off who may have to treat me. I might make things worse!

[groundhog]

Lynn, you don't have to lodge a complaints exactly just discuss things with them - pals or here in Wales it's patient support services.  You've every right to chase things up and I know myself, things get missed or lost.  Why not make the phonecall or email them as you need reassurance.  They won't be able to give you clinical information obviously but maybe can reassure you that everything  is in order. 
Thinking of you,  difficult enough - you do not need any unnecessary stress and anxiety.xx

[ellie]

OMG Lynn, this is terrible. You are being so patient, I know I definitely wouldn't be.   The situation is NOT acceptable.  I think you need to start making a fuss, you have been told you have cancer.
       By making a fuss it surely cannot makes things worse, they have already made things bad for you.
 Please start making phone calls and tell them exactly how you are feeling.....
What disgusting treatment......only my opinion of course. 💐💐💐💐💐

[CLKD]

Contacting PALS isn't complaining.  The people in the Office liaise between patients, relatives and staff and were VERY helpful when I had recent communication difficulties when Mum was 150 miles away, in Hospital, hallucinating so that I didn't know which way was 'up'!

This is not the best way to treat anyone waiting for diagnosis and a treatment plan, however, it is the end of the Financial Year >sigh<.

  - give PALS office a ring and ask if they are able to find out where your Scans are.  I know when Mum was in Hospital 3 years ago her late-night CT scan was 'read' in Australia 

[coldethyl]

I don't see it as complaining about those treating you- I imagine they are as frustrated with the system as you are- you can just outline what has happened and say that you feel they ought to review their arrangements for handling scans and notifying patients- if they had said that it might be a few weeks before you heard then you would not have been up and down so much , but they didn't and gave you the expectation and assurance that it was going to be within a give time frame.
PALS would be a good place to start - you don't need to go in all guns blazing just a calm explanation of your problem. xx

[marras]

So sorry you're having all these problems Lynne. Nothing to add except PALS is a good way to go. Sending big hugs.

[CLKD]

Or ring the Consultant's secretary: "In order to stop me worrying any more than I am already, having been told that I have cancer, could you chase up my scan results please? " [we don't bite, honest ..... ]

[Megamind]

How are you Lynn?

[NikkiDUK]

I can really relate to this. For just over a year I've had problems with my pancreas - started with excruciating pain that landed me in A&E but nothing specific could be found. Thankfully I have a very switched on GP who sent me for an endoscopy (horrific but over quickly) which was clear so the consultant who did it suggested I gave an ultrasound to check my gallbladder. Again my GP pushed this through and it was discovered the head of my pancreas was inflamed (suspected pancreatitus). I was put under the care of a specialist consultant at the RBH in Reading and had two CT scans, two specialist MRIs and an EUS plus innumerable blood tests. Always told I had suspected pancreatitus - bloods only ever showed inflammation and slightly elevated blood sugar. Always told no cancer. This carried on till Feb this year when I suddenly became very jaundiced and had indescribably bad itching and ended up in hospital where a stent was inserted in my bile duct and a biopsy taken. Well guess what? It's cancer. A big 5cm tumour and borderline operable. Things have moved incredibly quickly since the day I was told (22 March). I'm having a Whipple procedure on 13 April at the Churchill in Oxford - my only chance of a cure. I may have to have mop-up chemo. The op has a three month recovery and they remove most of your biliary system. I'm a fit, healthy 52 year old (apart from the cancer!) and I refuse to even contemplate not beating this, whatever it takes. Maybe I'm in denial - I know what people think when you say you have pancreatic cancer - but at least they're going to try to save me. At least I know what I'm up against after a year of not knowing. My poor husband only found out the week before that his mum has bowel cancer (she's had her op and is doing well although doesn't know yet if she needs chemo) so he's the one I worry about, not me. The thought of my massive op in three days time terrifies me but I have no choice and I will face whatever is to come one day at a time.