Let down...again !: When I wrote my... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Let down...again !

Danni54 profile image

When I wrote my last post I was so full of hope and felt happy again. I had forgotten what that was like! However, my original Dr. has overruled my new Dr. and once again I am getting no help or support and I am feeling so depressed. I have had 3 day's where the pain has been unbearable and yesterday was truly horrendous and that was with Opioid's and Oramorph.

I was expecting to be sent to see an Orthopaedic Consultant about the 2 fractured vertebrae and finding out, once and for all whether I have spinal cancer or not and why is the pain there getting so much worse? I was also waiting for a referral to my Thoracic Consultant who found the lung cancer after 15 month's of no treatment. I am still waking up in the middle of the night coughing and coughing and being violently sick for over an hour and a half and this is the 7th test I have put in for that but it seems my Dr. isn't going to send me now. The new Dr. told me that he would but my original Dr. appears to have overruled him ! I don't know what to do any more because I feel too tired to fight any more !

Sorry if I'm rambling but does anybody know how long it would be for spine cancer to show up after a Lobectomy? One Radiographer said that I had cancer at the 2 fracture's and then our hospital 's Radiographer said no it was Osteoporosis. Considering they left me with lung Adenocarcinoma for 15 month's, didn't tell anybody and an Australian Radiographer had seen the tumour on my lung but our hospital forgot to say anything until I was rushed to hospital with Pneumonia. Australia because our hospital couldn't get enough Radiographer's!

I know that I shouldn't moan but today is a down day. Sorry! Am thinking of you all . Please take care and I send my love to you all.

Love and hugs to everybody. Danni xxxxx

13 Replies

Hi Danni I am so sorry to hear you are going through so much pain and not getting the help or answers you need.All I can say is keep trying to speak to someone whether it’s MacMillan or your lung nurse and hopefully they will listen and get you the help you need.I can imagine you must be exhausted and feel like you are getting nowhere but please don’t give up.I know it’s not much help but I will pray for you and send you love .Is there no one who can speak on your behalf a friend or relative? I do hope you get some help soon ❤️🙏

Danni54 profile image
Danni54 in reply to Unicorn3344

I just wrote back to you , pressed the wrong button and lost it ! I have done that before so I really need to concentrate! Thank you so much for your reply. Prayer's and support mean a lot and to know that people care . I am really lucky with our friend's . My family live quite a long way away but they are so angry and upset for me and my husband. One of my sister's has also gone through cancer and she has also had no help or support from the medical profession apart from an operation to remove the tumour, Bile duct and part of her Pancreas! We live at opposite ends of the country so is it our age that stops us getting help and support? I am so sorry to hear about your husband. It's not just the person who has cancer who needs help and support but partner's , family and friend's. I have already had so much support from people here and I am so grateful for that. I wanted to let you know that I am thinking of you both and will pray for you also. People here are amazing. I will try to keep fighting but I'm getting really tired . The Dr. doesn't want to hear from my husband or family so it's up to me to keep fighting but nobody should have to. Saying all of this, I truly do appreciate everything that Nurses have done, through and before and after the Pandemic because they are taking on more and more of the load. I am thinking of you both.

Sending love and hugs,

Danni xx

So sorry to hear about all your troubles - these should not happen.I agree where is the support.! GP's disagreeing does not help. My friend has had problems like this but she wrote directly to the General Medical council to complain and got a good reply. If you have the energy - try it - what have you got to lose. Chin up we will say some prayers that you get the answers and help you are seeking.

Hi. Thank you so much for the support. You have no idea how much it means to me. People here have been so kind and understanding and I'm so grateful. Why can't my Dr. be more like all of you. My husband and friend's are feeling so lost because they can see the pain I'm in but they feel helpless. Today, I am in agony and I can't go on much longer with this level of pain. I have had a lot of pain in my life with Endometriosis and the Lobectomy and got on with life and loved walking my dog's and painting but this is on a different level !Thank you again and please take care. Thank you to all the brave people here.


Danni xxxx

Hello Danni54,

It sounds as though you are having a very hard time and I am sorry to hear that you are in so much pain. Do you have a lung cancer specialist nurse? if you do, I would get in touch with her as she will be able to review your pain control or refer you on to the pain control team. Once your pain is better controlled it will be easier to seek an explanation from your Drs as to why they are not proceeding with the agreed investigations.

Palliative care (also known a supportive care) are the experts in dealing with the side effects of a serious illness that can’t be cured. They use a holistic approach to treat side effects of treatment or disease progression, such as pain, insomnia and vomiting, these teams can be involved when you are still actively receiving treatment, they will work alongside the oncology teams, this is something that you should speak to your nurse or Gp about as they will be able to refer you.

I do hope that you manage to get some relief from the pain that you are experiencing soon.

If there is anything else you would like to discuss you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

Roy Castle Support Team

Thank you. You are all so great at replying quickly and giving me such good advice. The pain is just dreadful and is making me feel sick. However, my husband was going to go with me to the Dr. tomorrow but he has had a ' funny turn ' and as he has 2 blocked arteries that is taking priority just now . He takes Aspirin and has Statin's and a spray. I will reply to you, properly tomorrow. Everything happens at once and he is my rock. Thank you again.

Danni xx

Hi Annie,I feel so sad for you l can’t understand why they are just ignoring the pain you are in. I know money can be tight but have you ever thought about having a private consultation.

I don’t mean to be paying for treatment, if you can source the right doctor it may get the ball rolling for you, it really is worth a try.

They can’t except you to go on like this if you lived here they would have you as an in patient on the pain control ward.

I do hope you get some help lm thinking about you xx Tara

Danni54 profile image
Danni54 in reply to Zac2018

Hi Tara. Thank you. I'm so sorry that I haven't messaged you or Pam but I am feeling so ill and now Norman isn't great but will not go to the Dr. ! I think he's scared about what they will say because he has 2 blocked arteries. As I said the new Dr. who came here was so kind and he wanted to set up scan's and appointments with my Consultant but my original Dr. has overruled him. However, so stupid that I hadn't thought of seeing somebody privately! My head is just not working! We did that before when I had Endometriosis and I went to Aberdeen for that and my wonderful Gynaecologist had me in hospital the next day. I will find out whether my Thoracic Consultant sees people privately. I was up till 4 a.m. coughing and being sick again and my spine is so sore with the pain creeping up. I'm also fed up with moaning and would rather know how you are. Will message you. Please take care. I may go quiet when I'm really bad but I still think about you and Pam. People here are so kind and supportive and I am going to do what the Roy Castle Support Team have suggested and I will phone the Specialist Nurse at our hospital. I have also written to my Dr. saying that I have coped on my own for long enough and I need help .....now !

I hope that you are coping. Take care Tara.

Love and hugs ,

Danni xxx

Lots of the private consultants work in the NHS, hopefully you get to see the right one.Don’t be going too far a field because lm hoping they can help, you don’t want to be traveling far. Usually the consultation’s are just around 1-200, just phone the consultants secretary, but make sure they have an NHS positionx

Love Tara xx

Me again! I just had a phone call from the hospital to say that they had a cancellation and could I go to our Cottage Hospital to have my knee's Xrayed. Thank goodness for my new Dr. who must have gone ahead with his request! My knee's have also been in agony for well over a year and above the knee's there is swelling and my right knee gives way. It's a start! I would rather have my spine and the coughing and sickness looked into but I will ask the Radiographer a few question's. I never thought that I would end up being a pathetic lump! Will message shortly! Love and hugs,

Danni xxxxx

Hi Danni

I am also having problems getting any meaningful help from the NHS, but I am working on it!

I see some progress has been made. I hope you regain your confidence in the medical profession. Don't be a wimp (as I was) and just accept whatever you are told. Ask for explanations and about possible alternatives.

Look out for your own interests, and good luck. We are all here to support you.

Danni54 profile image
Danni54 in reply to ginkgo

Hi. Thank you so much. The support here is amazing. I had Xray's this morning on my knee's and the Radiographer was so lovely and was horrified at my lack of treatment and support. She also advised me to phone my Specialist Cancer Nurse which I will do tomorrow morning. I didn't even know that the Nurse could help me with getting aid's to help me in the house. I don't think that I am a wimp although I was at one time so I do understand what you are saying. I had a horrible, patronising, arrogant bowel Consultant and I ended up telling him exactly what I thought of him! My husband was there and sat with his mouth open because he will never speak back to a professional person! I gave up on that a few year's ago and I have told all the medic's that I just want the truth from them all . I am still pushing for that !! I don't think that I will ever regain trust in the NHS because they have made too many mistakes with me , my parent's, who both passed through negligence and friend's who have suffered. Saying all of that ,my Thoracic Consultant and his team were wonderful when I was first properly diagnosed with Adenocarcinoma in my right lung.

I read your bio and I'm so sorry but from what you say you are a fighter! Keep fighting and where you are there for me ...I am here for you and all the amazing people here.

Please take care and I will be in touch.

Love and hugs,

Danni xxx

Hi Danni, yes those Specialist Cancer Nurses really are the tops. Without mine I wouldn't have had any further contact or help from the hospital or medics. She got me the appointment with the Respiratory consultant which was helpful at the time, but offered nothing going forward. She then got me a new appointment with the oncologist and he offered exactly what I was hoping for.

I hope you get the help you need and I will be thinking of you.


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