Hello: New to any kind of forum, it’s a... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

4,516 members2,705 posts

Hello

Llanigirl
Llanigirl

New to any kind of forum, it’s a first for me. Sadly joining because I am trying to get my head above water and learn to swim through the flash flood of an unbelievable Adenocarcinoma of the lung diagnosis. Stage T2b N2 M1a but beyond my belief or comprehension now being classed as stage 4. Hospital and GP have been totally unsupportive and not providing me with any clear information on what has been a 16 week bad trip to date.

Struggling to get my head around the treatment I have been told they will give me. No treatment options discussed with me. Been told sternly that my next appointment and all following appointments will be strictly limited to 10 minutes so don’t know how I am going to have any opportunity to ask questions. Feel dictated to. Feeling under pressure to consent to start a treatment that I have no knowledge of and when I really feel that the risks or alternatives have not been thoroughly discussed with me or my family - this has been an issue before and I have been put under pressure to sign up for tests without proper presentation of the procedure or risks

I feel like I am a piece of meat on a conveyor belt of hospital targets

They don’t like me asking questions...it upsets the appointments schedule and I have been given no contact details to reach anyone at the hospital to discuss things with. I have a very uneasy feeling about all this and would like to know if this is usual behaviour or am I in a bad situation with the health care trust in my area?

The diagnosis was delivered by a consultant who I had only met the week before for about 10 minutes, she was chaperoned by a lung nurse and there was no Macmillan Nurse on hand to offer support to either myself or my daughter

I still haven’t met one and any information,support or advice I have had up to this point I have had to get by hours of internet searches and phone calls to help lines

The stress of that alone has been overwhelming

Completely new to hospitals and dealing with the NHS so have no benchmark to judge by.

I have seen a variety of consultants over the weeks and believe they are all working under the MDT...some not bothering to introduce themselves or inform me of their specialty, only had the meaning of MDT explained to me about a month ago because I complained about their shorthand speak. Different Consultants have given me conflicting information and advice and when I’ve questioned this I’ve been either blanked or had further confusing comments.

Is this what I should expect going forward?

My family is in pain and we can barely sit together let alone talk through how we each feel or how we will pull together to support each other

Again no support from the hospital, this alone is something I would have expected as a basic provision from them...am I wrong? Am I expecting a service that doesn’t actually exist?

If anyone has a life jacket can you please fling it my way.

9 Replies

You sound like you are having a really bad time. Which hospital are you being seen at? It might be worth speaking to the Roy Castle helpline and also trying to get a one to one appointment with your lung cancer nurse. It is a really hard time when you are first diagnosed taking all the information etc in. I was given diazepam initially by my GP to help me deal with this overwhelming time. Maybe try to speak to a different GP and book a long appointment in advance. I tried to see the same GP initially so that I didn’t have to repeat myself. I must say that since being diagnosed I have had excellent care if you aren’t happy ask to change to another doctor or to get a second opinion. You can also get support from PALS Patient Advice and Liaison Service at your local hospital. They deal with people who are not happy with their experiences and are very supportive. Keep asking questions til you are happy with what is happening. Wishing you all the best. I was diagnosed stage 4 4.5 years ago and am still here to tell the tale. It isn’t an easy journey though xx

Sorry to hear you're being given the run around at what is a very stressful time. Too often medics assume that everyone understands their acronyms and medical terms so you have every right to ask them to explain. There is a lot of informed clear information on the Roy Castle website that may help you understand some of the terminology/terms better but there's no excuse for being passed through the system like a piece of meat. Ask to see a Clinical nurse specialist (or lung CNS) although some of them are referred to as 'Macmillan nurses' due to their funding, other Trusts call them the CNS. They usually have more time to explain than consultants. Which Trust are you at? Do give the helpline a call if you get chance as you will need to vent as well as understand how to find your way through this maze. I was given my diagnosis (sort of ) by a registrar 7 years ago who then told me they weren't sure as they couldn't interpret the CT scan. I never saw a nurse specialist and turned to google to help me (not a good idea I'd suggest as there is so much out of date information on the internet that it can cause even more worry). It was 2 years after my diagnosis that I even found out such nurses existed and asked if my Trust had any when on a follow up check and was then introduced to 2 of them. Most Trusts have them but access to them is variable so do ask about them. I had hoped things had improved since my diagnosis and radical treatment 7 years ago - it certainly has in terms of treatment options and trials on offer but it is a rapidly changing area in terms of treatments so it is important that you are treated by a specialist for your specific tumour as mutational differences impact on which treatments work best. The information on Roy Castle website also includes explanations of the different treatment types (including immunotherapy) so I'd suggest you have a look there and then frame any questions for the medics in advance of your next visit. Good luck.

Hello Llanigirl. Welcome. You are in the right place for information here. It is a mega big shock hearing that you have cancer. We know what that feeling is like. The replies from JanetteR57 and Bow-19 are informative and very helpful, as they have been through it all and their inner strength keeps them going.

I hope you get sorted with the right treatment.

Many blessings.

You've reminded me of when I was told my cancer had returned and it was terminal. I was handed over by my regular consultant and CNS who I'd become familiar with, but who was, oddly, accompanied by another nurse dressed in a BLACK uniform (who the hell thought that was a good idea?) I'd never seen before, to a new consultant (who gives me short shrift) and her posse of acolytes. I'd been handed over to another hospital.

I now wonder if that's how you'd feel if you'd been on trial for a crime you're innocent of and suddenly you've been found guilty, sentenced and handed over to the prison guards and it's a new set of circumstances and staff you're going to have to get used to.

I mention this simply because the combination of wrecking-ball news combines with the hospital's standard procedures that you've never had any previous familiarity with and you are scared and upset, even if you think you've always been pretty good at keeping things together because you've never been in this place before.

However, very soon you will form trusted relationships with the professionals you will be dealing with and this will provide a degree of comfort as you get used to them and, equally, they get used to you!

Having a serious illness certainly gives you a new insight into humanity ... including your own, and I have found this a strangely rewarding insight.

Me saying "you'll get used to things" probably sounds rather bland, but please be assured that the rawness of the initial upsets will lessen as you travel down this new road.

On another note, Llani? Is it the Llani I know I wonder?

All the best,

Neil

RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear Llanigril

So sorry to hear of your experience and understandable how you must be feeling at a time when you need to be listened to, the forum is a great place to vent and as you can see there have been excellent responses to your post from those who have been through this.

Roy Castle website does have lots of information on the journey with lung cancer, you can either view or order the information booklets online:

roycastle.org

The Patient and Advice Liaison Service (are part of the NHS) provide confidential advice, support and information on health matters. The link below will take you to their website page and how to contact them:

nhs.uk/chq/pages/1082.aspx?...

It is very disappointing to read that you have not received contact numbers and support, which is not usually the norm; you can either private message us with the Hospital you are attending and I can provide a telephone number for you for the lung cancer specialist nurse, or if you wish to discuss anything, please call us on our free nurse led helpline number on 0800 358 7200

Maggies centres, which are placed in some Hospitals provide practical, emotional and social support - maggiescentres.org

Your experience has been unacceptable, and it may be worth booking a double appointment with your GP to discuss things. It may be worth bearing in mind that you are entitled to a second opinion within the NHS.

Our nurse helpline is available on 0800 358 7200

All the very best

The Roy Castle Support Team

Hi Llanigirl,

I am sorry to hear of your very poor experience in the NHS. I am glad you posted as I have had a similar experience over the last couple of years, and I found complaining was just a waste of energy. No one, including friends, believed that my fight to get information, help and treatment could be so bad. After all, according to many adverts and propaganda, no one faces cancer alone. The best people I found to talk to were the Roy Castle Helpline. You need to understand though, that they don't have access to your notes, so understandably are limited in what they can advise you.

Accepting that I am an inconvenience to my GP and hospital was the best thing I did as I no longer have expectations that I will come away from an appointment satisfied that we are on a good path of treatment.

So in answer to your question, I too have found the service I expected does not exist.

I hope your family are supporting you and each other.

Llanigirl
Llanigirl in reply to Ry8tes

Hi, My name is Nikki...I will start by saying this because introductions are important. Something I have constantly been perplexed by is the sheer number of NHS staff at every level who do not even offer the basic courtesy of an introduction.

Thanks for your response. What health care trust do you come under?

I haven't got too deep into things yet but it seems that peoples experiences of standards of care can vary from one Health Care Trust to another.

Yes the fight may be a bit of a struggle but I believe I have no choice but to take it on.

It really isn't satisfactory to have an Oncologist (one of only two in my hospital that deal with Lung Cancer) and a Lung Nurse (there are three of them in one office) who are strategically determined to keep me shut down, block any questions and 'handle' me like I have behaviour problems!

The oncologist even going as far as asking me about my 'mental health issues'...she had trawled through my medical history by 26 years to a period of post natal depression that in reality was more down to exhaustion as I had a two year+ youngster who had literally woken up 12-14 times every night from birth. That would make anyone depressed.

Tapping her pencil in a terse manner on her notepad and saying 'we really must stick to point' every time I opened my mouth to ask a question! Firmly, sternly informing me that every consultation from now on would be strictly limited to 10 minutes. No More!

The whole thing seems so unsafe. I have now got my health care records from both the hospital and GP and its quite disturbing to see the inaccuracies and judgemental values they are placing on me. Interestingly the Nurse notes are missing records of many of the phone conversations that look place. In all the notes things are recorded with a dishonest slant.

I detest liars and manipulators. I cannot find it in myself to trust anyone in that hospital to treat me.

Hi Nikki,

We have had similar experiences. I was also told I was depressed and suffering from anxiety. I kept trying to tell the doctor that I was ill and therefore not as cheerful and positive as I was normally. I believe that this focus on depression delayed my diagnosis and in fact I am now sure that my tiredness was down to the undiagnosed cancer rather than mental health. Looking at notes, my GP had recorded my consultations as talks about low mood, nothing at all about the sweats and fatigue that I was telling him about.

I was at university Hospitals Bristol. To get to speak to a lung cancer specialist nurse you are vetted by an answer phone and getting a reply was hit or miss. They seemed keen to fend off questions with bland answers probably from Google. Often they didn't respond. Better of going it alone, contrary to the "No one should face cancer on their own" myth. I do hope things improve for you. Which area are you under?

Ray

oh my goodness Llanigirl bless ya little cottons. Firstly do not apologise for ranting. Better out than in and is good to vent. I have a family member who has lung cancer and in comparison to what you have gone through with the medical profession we cannot complain.

Yes been long winded and seemed as if we were getting fobbed off but in fairness to the medical profession they have been brilliant.

Unfortunately my family member is of the opinion oh well they will get in touch soon, but being a bossy old boots and much as I feel for everyone else, I will not leave everything to the professionals and wait until they get back to us. So unbeknown to my family member I and another family member made things happen.

And by making things happen I mean telephone calls, email speaking to the local doctor and so on.

Reading what you have gone through my heart goes out to you.

I am flabbergasted that you have a time limit. Pardon the French but bollocks to that and if you have a question then ask it. Yes I know there are other people waiting and they have a time to see the doctor and everyone and their diagnosis is precious, but this is unacceptable.

Not sure which area you are in but if that were to happen to my family they would be the ones needing assistance!!

Honestly do not understand the stage you are at but please do not be dictated to and I do hope that you make the right decision for you.

You are NOT alone and as suggested get a second opinion - along with this site there is the macmillan site so you may want to have a look at that it may help.

Please stay strong and don't let these bad experiences get the better of you.

You may also like...