Hi all on the lung site , I have had two more messages from the respiratory team about my lung cancer diagnosis and me and my family are getting upset with this way laying tactics., so we are all a bit fed up with it. They have now changed the agreement again in respect of radiation treatment, and changed which lung gets treated first if at all . The treatment offered is only effective on small lung lesions and to date I have not even been reviewed by an oncologist. The radiation was agreed too now they are saying I am not fit enough to be treated but apparently I am well enough to undergo things like tennis etc to get fitter. It seems like they are indicating they do not want to treat the cancers they diagnosed from pictures taken of my body and a biopsy . So why offer treatment at appointments and waste both my time , my grandaughters and the clinic staff!!!!!! No wonder the NHs is on its knees. My freind summed it up nicely but you are dying so why bother. I would not mind but some of my pain is caused by pills that over 70s are supposed to be prescribe with caution. What about our emotional health status ? If I am the lucky 3% I could get another five years. But all this waiting etc is reducing my chances of a possible cure on a small early cancerous growth. Off to Physio friday no point if they are not going to treat me . I can have private Physio in my own local area ,my daughters been doing that for years. How would you feel if you had been told you had three cancers, agreed to have the necessary tests only to be refused the best treatment of a possible cure. without even being seen by an oncoligist, no staging done either. Thls is a bit over the top wouldn't you think. ? Oh and they are out of the treatment time now for cancer referral, it ran out on the 5th of May. Excuse my rant and thank you to anyone who reads this.
Can I have a moan please???? - Lung Conditions C...
Can I have a moan please????
Dear Katie, you have been and are being very badly treated in my opinion. As I see it you’ve been diagnosed so treatment needs to start NOW! I’m not shouting at you but the medical people who are ignoring your health issues.
Please get in touch with your medical team/ secretary….whoever and tell them how stressful this is and how your mental health is being affected. Don’t delay.
I’m so angry because I’ve been through cancer and treatment and felt well cared for. You’re definitely worth treating and shouldn’t be made to feel you’re not.
See if you a take someone with you to discuss anything as a second pair of ears and eyes is a good thing. Good luck to you.
Carole xxx ❤️
Thank you Carole , we will go to the Physio on Friday and in between I will be contacting the the respiratory department re this problem , my granddaughter has been going with me to all the cancer appointments. Even Macmillan nurses said this is not how it should be for myself as I have been diagnosed. They have missed the cancer target for commencing treatment already, the files say so . xxx
Thinking of you Katie. Bless you. Xxx
Just a quick reply a letter came this morning for oncologist appointment for Monday morning at 9.00 am. It is at the cancer centre. So hopefully now we will get some sensible response and we will also have the Physio record re started on Friday . Its all supposed to be totally across the board electronically from Saturday which should speed thing up, from now on in. Hope all is well with you xxx
I hope it goes well for you. And you definitely weren’t moaning. It was a merited complaint!
That’s better news Katie and l hope everything goes smoothly from now on.
My appointment was fine thank you and all ok so far.
Take care xxxxx
Good news glad to hear all is going well for you. xxx
Thank you Katie xxx
This is terrible and unacceptable Katie.id be ringing secretary of Dr u saw + getting an urgent appointment x
Appointment came this morning for Monday 14th
Good! Make a list Katie of bullet points You want to go through xxc
In my humble opinion it’s wicked the way you are being treated! You’ve been diagnosed so now you need to start treatment. I can’t understand why they’re changing their mind over which lung is treated first, when you haven’t even been reviewed by an oncologist. No wonder the NHS is the way it is - one hand doesn’t seem to know what the other hand is doing!
Sadly I have to agree with you, so much money being wasted on several people doing the same job and no get together of facts. Thank you for reply
Yr going to have to be proactive Katie+ put Yr foot down,asap xxc
I used to work for the health service years ago and the communication there is rubbish!
I did too, I also worked on the reintroduction of the patients participation team for five years at the said hospital but the patients end of communication has declined once again. The NIce regulations say the patient has to come first reality says it won't work. But as PatK1 says I will have to put my foot down and be proactive, difficult when all your being offered is a death sentence as it appears to me. I was not even offered a choice of hospital for any treatment, but presume thats due to the COVID crisis reducing hospital choice. Enjoy your day
I’m so very sorry Katie what you are going through, it’s totally wrong. I would definitely contact the respiratory team also PALS at the hospital. I’d get your family to contact your local health authority or NICE. They are the ones who say yes or no to what meds people can have. Also get your MP involved. It’s appalling that your consultant hasn’t been in touch with you. You certainly don’t need all the unnecessary stress and worry Katie! Take care.
oh katie this is ridiculous. You need treating and so you should get it. How can it be too late to refer for cancer? There seems to be an almost pathological inability or wish to organise themselves in the patient’s interest. They seem to invent criteria and procedures which are designed to bar the patient from the proper treatment.
I have just had an unholy row with two OPAT teams doing exactly the same thing, out of which I seem to have come out on top thanks to the intervention of my GP, but it is nowhere as awful as what is being done (or not) to you.
I don’t know what to suggest except maybe talking to PALS and getting your GP involved and ask him to insist that you are seen by an oncologist who will decide what you need and stick to it. Your GP needs to know anyway that you are being messed about by the hospital team.
If we were not having an election I would suggest getting your MP involved. It might be useful to get your daughter to begin the complaints procedure against the hospital, especially as you have not been seen by an oncologist.
Surely all patients with cancer have the right to be assessed and treated by an oncologist instead of being left in the hands of a team of lesser trained individuals who do not seem to know what treatments are for what or where and have made wild assumptions as to what you can tolerate instead of assessing you properly under specialist advice.
I am thinking about you and only wish that I could be of more use.
You are so right Swizzy, it seams many assumptions are arrived at via what others perceive when seeing you in a medical environment. Nobody ever seems to assess the energy required for a healthy person never mind an ill person. The decision given to me reeks of refusal on grounds of not being able to make me better. I know they cannot make me better thats been the case since 1992 but even cancer treatments have moved forward these days and most people expect to be given details in ordered to make their choice not a panel of varied people who don't know you making a decision on what services they want to give. I am not terminal as far as I know even one of the surgeons said he would expecrt me to be still around in 10years time to tell him how I feel. Its the waste that I hate all those tests that cost money , cause stress to no avail of course I could cross a road tomorrow and get knocked down or killed anyway. Bye for now will let everyone know how it goes on Monday.
Stick to your guns. Thinking about you.
Thats disgusting is being made to wait an age for treatment!
Dear Kate the way you have been treated is downright deplorable ... I'm blown away by your post and my heart goes out to you and your family who are going through it with you ...
Rant all you need to have a long chat with your family regarding moving forwards and it might be time put your foot down with your Consultants and GP to get some kind of treatment...
I would be contacting somone to speak to and say it's affecting your mental health daily ...
Love and hugs 🫂
Seeing an oncology specialist on Monday thank you for well wishes. Maybe now things will move forward.
Katie I really feel for you -My GP reffered me u, I have been there. I was diagnosed with Bladder Cancer in 2021 - After my GP had reffered me,
My life was a rollar coaster - it's caught early I was told, superficial I was told - Consultant said I could BCG again, he was overruled my MDT -- I was told I needed bladder removal and a stoma. I refused.
They said I could try BCG again, I turned up thry said sorry, there is something on your lung - I was devastated, It was out of the blue. Then it went low grade and could have BCG again. If it has worked, I would have regular bladder camera cathters Flecy Cystocopy - I did not like the word IF.
So really I can see your worry, you have beed treat bad -
You are right all the waiting is not helping. I got an apology when I had to wait near a year, I feel for you, stick up for yourself and take soemone with you,
Reading your post - You can't have treatment - I really don't understand. Try to get someone who is able to bat for you - This makes me so angry, Don't give up, but you really need help wih this one xx
I realised from your posts that you had had a bad time. As you say its that IF word that is just doubtful. I have been taking someone with me, but don't understand why we have gone from operations to no treatment in a 6 month period. Most cancers are treated these days and as I understood the treatment offered can cure small cancers. But now they are saying no treatment. Crazy as far as I am concerned and nobody should be put through such an ordeal uneccessarily. Stay as well as can be Bye for now xx
It's unfair what has happened to you - At first I was givem bull, then to get me of the books, I was offered an op that probably I could not have stood. and as it happens I did not need,, Now I am getting treatment but that ends this Thursday, then I go on a regular they will look see.
I really hope you get treatment to give you a fair chance -Good Luck Katie. xx
Katie Iam so sorry this is happening to you. I cannot add any additional advice that others have not already mentioned, but I hope you can see someone soon who can offer you the appropriate treatment you need. Thinking of you and wishing you all the best. Sending a big hug.🥰
Dear Katie, I'm so very sorry to read your post, how very distressing for you. It must feel as though you've been written off. Most of us would .I hope you'll talk to your gp to get him on side, also contact PALS too. I wonder if the helpline would be able to offer some guidance on getting the best support & treatment? Then what about your MP? It's just not good enough, cancer caught and treated early offers the best outcome as you know. Good luck , I really hope this gets sorted asap. Thinking of you 💙
Appointment Monday Peege so may get a few answers then. Bye for now take care.
Will definitely be thinking of you on Monday xx
Dear Katie,
I am shocked to the core. Speak to your MP, your local radio station, and continue asking MacMillan nurses to look into this appalling treatment, your GP will also push for speedy treatment.
I’m so sorry Katie for the heartache being caused by this.
Tell each of your family members, young and not so young, to write to their local MPs of all parties, explaining your situation, and asking for help as they love u so much and want the best outcome for you.
It’s a scandalous situation, you don’t deserve it. How dare they.
Keep strong fight for your rights.
Best Wishes
BERNARDINE
Hello Katie. To say I am flabbergasted is an understatement. I don't understand why you haven't seen an oncologist yet , you have a right and indeed need to know exactly where you are with staging and the course of action ahead. Everyone else has basically said what I am feeling. It's a shoddy job and you need strong advocacy now. Please do keep updating us. I truly hope this gets sorted very soon.
Cas xx 🙋🐶
Will keep you updated Cas , hope you are keeping well xx
This is awful. I really hope you are able to get the treatment you need soon. I can’t believe you’re having to push for it when you are this ill.
Omg how can they treat you that way its disgusting please make sure you go further about it you need to be treated sooner rather than later the N.H.S. have gone downhill fast it's like they don't care about patient's anymore contact PALS on line about it but you need to still see someone as you need treatment now not when it's to late x
I’m lost for words as I can’t believe they can do this to anyone. Surely it must be a communication issue left hand right hand etc. You must be in a terrible state & rightly so. Please try to get an urgent GP appointment to discuss a way forward. I would definitely also call PALS to get the ball rolling. Please let us know how you get on x
All I can say is everything is going digital on Saturday , seems that's more important than patients correct treatment. Bet the newspapers etc will be around for photos of the launch.
I thought places were digital already. It may actually help. You could speak to PALS & ask for a second opinion 🤷🏻♀️ x
I have an appointment for Monday 17th with an oncologist in the cancer centre. So maybe that might throw some light on the matter as to treatment or no treatment, it has taken 6months to go from GP appointment to actually seeing an oncologist . I saw my GP a week before Christmas and several times since. I feel like I need a second opinion. But need first one before asking for another. Lam struggling to piece together all the facts. But Monday will be the last chance for them to commence treatment proposals . A letter to my GP says this is what the Patient has been told. Thanks for your support
You definitely need a plan in place & a proper explanation of what the situation is now. Good luck for your appointment x
OMG Katie this is absolutely disgusting. You are entitled to treatment.. speak to your MP if you can't get anywhere with the medical team.. I wish you Good Luck and hope you get sorted soon. Sending hugs xxSheila
You can rant as much as you like and I don’t blame you. Good luck
I have always done best with nhs issues by putting it in writing. They can write up your records in a way that suits them, so write down your version, then email and post it to everybody you can think of.
Sounds like a good idea
sorry to hear of your diagnosis and treatment. But, to balance all the negative comments, my brotherin-law was diagnosed with lung cancer, mesothelioma, caused by asbestos, and his treatment was excellent from day 1. This was back in 2011, when the NHS was under Labour government. Within a week, he had seen McMilan nurses, put in touch with solicitors to claim compensation and had first follow up with oncologist. The NHS is massively underfunded but staffed by very dedicated personnel. Let`s hope that your treatment gets under way asap. Have a good day, Chris.
Dear Katie you have been treated so unfairly after being offered treatment then told they will not be giving any , do these people not see what all this is doing to you I hope you get some answers soon get the SASH people at your hospital involved they are supposed to help i had my biopsy around the same time as you and i am having my operation hopefully without cancellations at the end of next week also in my 70's and feel so lucky to be offered a chance of a few more years so i can understand how you feel keep fighting and stay strong Good luck
I can only agree Katie with everything that has been said. Sadly the treatment and system is truly lacking and unacceptable. It makes you feel as if they have given up on older people and don't want to treat them. Take care. Brian
Hi Katie,
You must be very distressed, frustrated and downright angry, not only with the diagnosis but with all mixed messages and delays in treatment for you since.
You have had lots of advice from folk here and I would reiterate speaking to PALS at the hospital and speaking to your consultant’s secretary to request a clearer understanding of the treatment plan they have agreed for you. The respiratory team should be able to support you with this. Katy.
Hope you get some satisfactory answers soon.
Go well,
Pauline
I have an appointment for Monday with oncology debating whether to see him first incase they have changed thier plans again before reporting it all to Pals as a starter point. My initial appointment was for possible side effects of a tablet. Its escalated now to 4 cancerous area s none connected or metatastic so far. A bit like chinese wisphers I thought these were proffessionals I was seeing. I cannot put on here what I think of this performance by the NHS staff. It does reek a bit of possible age related.
I don’t know what to say that already hasn’t been said. You must be so emotionally exhausted and your poor granddaughter, you need someone to fight your corner now and that could be a good MP . It definitely shouldn’t be happening in 2024 it’s no way to treat a human being.
Good luck
Wendy xx
Thank You
it sounds disgusting how you are and have been treated..asked for second oppinion at another hospital if you are not getting first class treatment at this present hospital it is patients rights which cannot be refused ..l wish you all the luck x
The general consencus is to go for second opinion but need a first from a Consultant before we proceed to that.
This is appalling treatment you are getting, definitely take it further, they really need to be treating you as soon as possible, as someone else has said contact pals & if needs be threaten them with taking it to a solicitor if needs be, they really are letting you down so badly, take care, sending love & positive vibes to you & your family xx 💐🌸🌺
I've no idea what to make of your situation, Katie. Is there an actual 'team' that you're involved with or are you seeing individuals who are doing their best to make choices when they are not getting the support themselves?
It's a dreadful position for you to be in!
I can't make it better, but I CAN send you virtual hugs and support. ((((( ❤️ ))))) .
I hope someone soon gets this sorted out for you. xx Moy
Hi MoyB, I am getting the impression that everyone is doing their own thing without consultant lead. Because, initially a GP referral on two occassions. I have even been given two different names for the lead respiratory consultant . I am not suffering from Dementia as yet and fortunately my lung cancer as not spread to my brain. But I don't intend to let this drop. This is not the first time I have endured such stupid behaviour at this hospital , infact it is just under 12 months ago . Will keep updating the group Have an appointment for oncology on Monday at last.
I hope the oncology appt. goes ok for you and you feel properly listened to and supported.
Some departments at our hospital seem to work completely independently and so information doesn't flow when it should!
I feel very fortunate that I have usually had great treatment, although the ENT I saw recently needs a kick up the bum!
My best wishes for Monday. Perhaps if at least ONE appointment meets expectations, the rest may quickly follow suit.
xx Moy
Well my Physio went well yesterday but it took an hour, She is saying as long as I can keep active I should be able to withstand the lung cancer treatment , but it is a difficult time and arduous. There are no spaces at the local gym on lung health course at present. She implied exercises could be overseen by them or my GP. So just leaves Mondays appointment to go, My sister is coming from Shrewsbury to go with me. Thank you for your reply
Best wishes for tomorrow. ((((( ❤️ ))))) xx Moy
sorry to hear your news but your not different from others I’ve met and seen in “treatment “I can only emphasise with yourself . And can not offer any advice or help as I’m dealing with my own back to front services. Talk about locking the gate after the horse has bolted 😡
Hopefully they will sort out this out of sinc direction at some point soon I was going to put a in the gallows’s Humor but it’s to early in the morning. Just know you’re not alone and keep on writing your rants. You probably don’t realise but you do have the gallows humour too. And that is impressive and important to keep yourself going 🥰🙏😘
Hi Katie, sorry to hear about your situation. I had cancer under my eye a few years ago, it was a lump sorted by a surgeon then the oncologist got involved and within a month I had surgery to remove it and then he arranged reconstructive surgery to make the eye look normal (one week later). And my mum had a cough they found cancer and the oncologist arranged surgery (half a lung removed) and then arranged follow up. I find it strange you haven’t seen the oncologist again these are the people who have all the power and make all the decisions. I had another cancer scare in 2017 and saw an oncologist luckily no cancer but found emphysema (4 holes in the top of lungs) , my gp only read cancer free took a year and a letter from the oncologist and all of a sudden I get a care plan , inhalers etc. So I think you need to see your oncologist as soon as they’re the ones that make the decisions. Good luck hope you get the treatment you deserve. Kevin
Got distracted today but back now. I have been saying all along I need to see an oncologist . Thank you for confirming my thoughts are right. I have an appointment for one on Monday at 9am. To add to the pot my insurers are trying to say I haven't paid my critical illness payments since 2018 but they have been collecting them from my bank account now for twenty years. Another problem I do not need.
I read your post and feel so angry for you. I hate to say it but those that shout the loudest get treatment. As member's have said Katie get in touch with PALS your mp , consultant, anybody that can help and give you some backing. Last resort go to the Ombudsman but don't take no for an answer, it's your life they are messing with. Goodluck and keep us updated x
So sorry to read your story. Appalling treatment and lack of it. I agree with sassy59, take someone with you who has a strong voice as it`s so hard to articulate everything in a clinical setting talking to medical staff. Good luck and don`t give up just yet.
Oh Katie, this is both sad and shocking. I hope you have the energy, or someone does on your behalf, to follow up the good suggestions others have given you. Bless you and your family. A lot of prayers and good wished are with you. Chris xxxx
I would be fuming, ring gp emergency appointment, let fly make sure they ring the hospital and sort things out for you.Dont be palmed off by the gp , we have to fight for treatment at the moment.God bless.
I agree with everything that's been said, just want to say thinking of you and sending hugs (((❤️))) x
you are entitled to moan as much as you want to.i don’t know what to suggest,have you tried Pals,your MP will be occupied.
I hope someone can give you useful advice xx
Dreadful, they just don't care once you get over 70.
I’m so sorry you’re being treated like this. As others have said go to your GP and get them on your side. I’ve often seen those that shout loudest are the ones that get sorted so time to get your elbows out. Oh and I really hope the treatment works well for you. 🤗
Gosh Katie that sounds like poor management of you by the medics concerned. Always good to take someone with you when discussing your health. I would rant at the team and try to see an oncologist xx
I have expressed my concerns to the team and earlier to pals as I felt uneasy about what was happening. But Pals has not been in touch as yet. And I cannot ring the Dr due to other appointments being more relevant, and time being limited as to when you can speak to a Gp let alone see one.
🤗🤗
This is so shocking Katie. I can't add anything to the support you have already had here. But wanted to send you strength for the self-advocation you will need to do and best wishes and support for your wonderful granddaughter. So hard to have to fight when you are stressed and unwell. Sending love.
Wow what a terrible situation to be in. I hope and pray you can get the attention and treatment you need. You can’t possibly cure something you don’t treat so don’t understand their lack of care. Good luck and I hope you can see an oncologist soon and start trea5ment.
Your WISH is my command: MOANing! I was cringing when I read of your experiences. I hope you find better providers that help you understand your options. All the best to you.
You have every valid reason to rant! Hope you get the answers you need on Monday. Your emotional health is definitely relevant to your physical health. Stand firm on your needs. So sorry you've been treated so shabby. Best of luck with your appt.!
Oh gosh Katie, I couldn’t believe what I was reading, that’s absolutely awful, but so pleased that you’ve had better news, I’ll keep everything crossed for you. X
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