just found out i have lung cancer

Hi this is my first post , found out i have lung cancer 3 days ago. I went to my DR,late April for joint pain . She arranged for bloods and 2 xrays 1 for my hands and the other for chest i asked her why chest ?you have clubbing nails and this is a sign of lung problems !! never heard of this and i work in a hospital

The blood results confirmed i have rheumatoid arthritis the chest xray showed shadowing

She then put an urgent request to Southmead hospital Bristol for a CTscan early May she told me i would hear between 7 to 10 days 5 weeks later !!!!!! i had a CTscan i was going to work and had not told anyone of my plight until i was told of the outcome from professionals

5 weeks is a long time to make someone wait for a urgent referral and i was so angry

The CT scan confirmed a tumour I made a decision to ask for any other tests to be carried out at another hospital in Bristol

Within less then 2 weeks i had an appointment to have a more detailed CT scan and to meet with a consultant at the Bristol Royal Infirmary

They have arranged a PETscan next week for me at Cheltenham ,Southmead hospital has spent millions on there new building wasted money on art work architecture and landscaping but they make patients wait for urgent care

Right thats my moaning done for today no not yet has anyone worked out how to read that stupid clock in the new Brunel building that also cost millions because i,m dammed if i can

So its looks as though its going to be at least another 2 weeks until i will know if the cancer has travelled and what treatment i will be offered

I finally told my Son and daughter last weekend which was so difficult my son lives in Derby and daughter in Worcester I am separated so no loving husband to give me a hug

I had my first grandchild last year and Derby feels so far away before this happened i would jump on the train and spend a few days spoiling her rotten shes my little precious i love the time we spend together and when i think of her i cant stop crying i,m finding i get tired by lunch time i,m trying to give myself a few tasks per day

i,m 61 before all this i never felt my age but at the moment i feel like a 90 year old and i should be purchasing a shopping trolley

Also been trying to find a group talk meeting where i could talk to other patients that have recovered and know how i am feeling i live in north Bristol

Well ill leave posting now and wait for feed back thanks for reading this post

55 Replies

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  • Welcome to health unlocked British Lung Foundation group. You will never feel alone on here. Just wanted to say hello while you wait for members who can give personal feedback

  • Dear Hollyboo

    You have had a truly horrendous time. And there is no excuse for the delay over the scan results. You have come to the right place. There are members here with similar problems, and don't worry about moaning. We do moaning here. We have all moaned. We are also good at listening,with lots of e-hugs, and e-tissues. Have you thought about complaining about your treatment? The place to start would with the PALS department at the hospital.

    With love and hugs

    K

  • thank you for your kind words at the moment i can only deal with one thing at a time and try and get through the day just keeping things simple because my concentrations levels are not good i keep a note pad to remind me of things i have to do , things i should try to do and things i may like to do for me so i set myself a few targets every day and tap myself on the back if i achieve them but finding this web site has given me another little world and i,m so thankful to everyone

  • ((((Hugs))))

  • thank you for responding i,m going to have olts of hugs and kisses from my grandaughter this afternoon

  • Excellent.

  • hi and welcome hollybooo! i am so sorry to hear what you are goi g through. unfortunately, up here in Canada we can have the same long waits for tests. it is so very hard on a patient who is waiting and worrying. you say you are very tired and unfocused! i believe most of this is due to the wait for more answers and plans. try not to take on any new "must do" responsibilities. if you can, just do what helps you feel a bit better. if the floor needs mopping, tell your fairy godmother to grab the witch's broom!! wishing you good luck and peace!

  • thank you for taking the time to respond to my post it feels good that i have people out there who know how i am feeling

  • I'm just letting you know that you are not alone here. There are lots of lovely people to help and support you. The nurses on the phone are fantastic too and they are very happy to help and advise. More importantly they listen.

    You are in shock! I know how that feels. Everything is so hard to take onboard.

    I'm sending you are very big hug to show we do care xx

  • yes it was a great shock and a long long wait not being able to tell family , friends, and work colleagues just keeping all to myself for 5 weeks

  • Hello hollyboo and welcome to this great forum. You have been treated very badly and my heart goes out to you. I really hope you get better treatment now and wish you well. Xxxx

  • yes i hope so too

  • You're going through a dreadful time and not having much confidence in your medical treatment must make you feel so vulnerable. I've found this forum is of great help and you will get that help here too. The very best of luck at your next appointment. Lilian xxxxxxxx

  • yes i think its the waiting thats putting a toll on me

  • Hi Hollyboo

    Sorry to hear about the awful time you're having. Hope they don't leave you waiting for treatment. It's so hard keeping that smile on your face but somehow you must. This is a great group and so far I've found everyone really kind and helpful, I'm sure you will too. Take care and keep posting to help get things out in the open rather than suffering in silence

    Big hugs, Brian :)

  • thank you i will do

  • Hello Hollyboo, keep your head up. First off, I have 'been there and done that' , at age 60. The PET scan essentially is a CAT scan but with a special dye inserted that shows up in the actual scan . Basically where cancer is will show up vividly in colors . Assuming it is cancer, they next will likely do a bronchoscopy to get a tissue sample. If the sample is cancerous, they will review potential treatment plans with you at that time . I have so far, knock on wood, beaten the odds and am still kicking! Basically, keep your dobber up and a smile in your heart. And importantly, don't jump to conclusions , and instead take it one day at a time. Please feel free to contact me if I can be of assistance. Best Wishes & Kindest Regards, judg69

  • thank you i have had a biopsy and it confirmed non small cell my second ct scan was on my vital organs this appeared to be ok so a bit confused what the pet scan will show

  • Hollyboo, PET Scan will better delineate the size and extent of the cancer. Again , contact me if I can answer any questions. In the meantime , light a fire under the rear ends of NHS. It is absolutely wrong to make a cancer patient wait for tests critical to Dr's developing an informed action plan. I am very serious, get on the phone in am , or better yet speak to the Brass at NHS in person and raise Hell! Kindest Regards,judg69

  • i did leave a message to this complaints dept that i thought 5 weeks wait for a urgent CT SCAN was scandalous had no reply

  • Hi hollyboo.....it saddens me for the way you have been treated....if you ever want to sound off, come on here because this is where you will find all of your friends in this fantastic group....ROOTING FOR YOU! Take care and Stay safe.

    Don

  • i have asked my ex if he will drive me up to Derby the week after my PETscan prior to hearing my results

    Although we don,t communicate much he has agreed , my son is in the process of moving house and i would dearly love to visit them when are settled in so god willing i will be going on the 26th of this month and stay for 1 night happier days !!

    ,

  • So sorry to hear this hollyboo and welcome to the site. Don't forget these days more patients than ever are living with cancer and treatments are getting better and better over time. I wish you all the best and also send you big hugs. xxx

  • than you for your comforting words

  • Hello, I echo all Lilaclil's words.

    Also wishing you all the best - do call the BLF help line, office hours. They have counsellors to guide you......03000 030555

  • than you i will

  • So sorry you have been having this problem with Southmead as I go there too. On the whole I am pleased with the care when I get it but sometimes they are very slow. I had to phone for letters which I had still not received after 4 months, but on the other hand I had an echocardiogram on August Bank Holiday Saturday last year. I have now been transferred to the Heart Institute at the BRI and have been told that I need cardiac catheterisation to confirm pulmonary hypertension, and will have it within 6 months, so I hope things go more quickly for you. Good luck

  • than you you too

  • This is for Carnival567 They told me in my hospital I should be looking at 6 weeks for my cardiac catheterisation? Or maybe we both missheard and it will be 6 weeks befoe we know when it will be?

  • For Offcut, thanks for reply. I'm certainly hoping it will be quicker than that, likewise ambulatory oxygen assessment. At the moment I feel as though I am waiting, waiting, and nothing happens. Once this week is over I shall get on to BRI about post consultation report and then GP. It is very hard remaining cheerful is it not, my husband is wittering about his back surgery etc, convinced he will be paralysed, my daughter-in-law is expecting her baby in a month and I don't want to put worries on her or my son, especially as her mother died of lung cancer only six months after Konrad was born. This forum is a lifeline. Perhaps you are right about waiting time and he did say six weeks, but I don't think so. Blessings xx

  • Sorry to read your sad news if the done biopsy the should of done DNA test to see what the dealing with DON'T forget to ask and best treatment unless patients ask these questions nothing will change.

    Hope all works out well and Taylor good treatment that works for you.

    mycancergenome.org/content/...

  • Hello and welcome to the group. I'm so very sorry that you're going through such a tough time and have been treated so poorly. Wishing you the very best of luck with your future treatment. Ill be thinking of you. XXX

  • thank you

  • Welcome to the site Hollyboo, sorry to hear it is not good news that brought you to the site. You definately should not have waited five weeks, I just got a cancer test done within around ten days, however our city does have one of the best units in the UK. My test was clear by the way. Sorry that is not the case for you, glad it is moving along now though the quicker it is treated the higher chance of survival in the case of lung cancer. Hopefully someone will be along soon who can advise you about group talks in Bristol, beleive the do have a cancer backup group there, so hope you find the details soon. Best Wishesand do take care xx

  • thank you i will keep trying

  • Sorry to hear your news - it can be so scary. However, there is so much hope so keep on fighting & being positive. 9 years ago I had right kidney and lobe of left lung removed because of cancer. All still well (fingers crossed) so no reason you shouldn't watch your lovely granddaughter grow up. Please keep us updated. Hugs and all best wishes x

  • they are bringing her down from Derby today for me

  • That's wonderful news - enjoy every minute x

  • hello everyone

    had news early this morning my son his wife and my precious grandaughter are driving down today staying 1 night so lots of things to do today they will be in Bristol 3pm so i can pace myself in preparation for when they arrive my mood has been so up lifted its a dry sunny day so i can sit and watch her playing in the garden

  • Outstanding news. So very pleased for you. Enjoy.

  • Very good news enjoy your day with the family x

  • So happy for you Hollyboo. Have a lovely time.

  • Hi - So very sorry for your sad news. I can suggest an alternative to a shopping trolley! Get a toy boy to do it for you. Hopefully that will take your mind off all the other things you have to deal with. You are never too old.

  • thank you your post made me giggle just what i needed

  • Hello hollyboo and welcome. So glad you are here but not why you are here. I too have Rheumatoid Arthritis and a lung disease because of it.

    I am quite shocked that you had to wait so long for the scan. I can well understand your anger. Anyone would be angry. What is the course of action now?

    I am sure your children are also extremely upset. Living away from parents is very difficult.

    I hope you are getting the urgent treatment you need. This forum is great for support and giving support. Hoping to hear from you again soon. sending a big hug.

    Cas xx 🌸🍀🌸

  • Hi ,

    my first CT SCAN report was a 23mm tumour on upper right lung and a 10mm on upper left lung there is a ? mark on the left spot whether this is a cancer as they only took a biopsy from the bigger one on my right

    the report was Adenocarcinoma

    My 2nd CTscan focused on my lower chest areas ,all my vital organs , they report there was no evidence of cancer

    next is a Pet scan next thursday

    i have had a lung function test and that was ok and thats all i know at the moment so who knows im just in a bit of a haze

  • Understandably in a haze. Goodness me who wouldn't be? Take it a day at a time hollyboo . Thinking of you. xx 🌷😘

  • Hi hollyboo

    Pleased to meet you and having read your post I obviously understand your extreme anxieties anyway ,and as I have been through a similar situation with my wife any help or guidance that you may benefit from I would be only too pleased to offer.

    Which mainly would be seek as much medical help as possible as quick as possible and stay as focused as much as you can ,you come across as a very determined person so you are a part way there already .

    Wishing you the very best of everything for everything

    And good luck

    Graham. Bristol

  • Now then, now then. That grand daughter of yours needs you to guide her, love her and importantly spoil her rotten!

    I understand the shock, worry and the unknown but do not not go see her as before. She will miss you and trust me any little one help a tired grandparent feel better.

    I hope the outcome is as positive as it can be for you.

    Smile, you are loved by that little one and your family.

  • HI all my dear friends who responded to my post

    i thought i would post this before i go to bed which will be very soon as i am all done in but in a good way because i have been playing with Robyn (granddaughter) in the garden ,took a slow stroll to my local park with my family and my 2 westies and have just finish clearing up and putting things away

    How quick this weekend has gone by and how i didnt think of my illness for most of that time but here i am again

    So tomorrow is another day , and i look forward to hearing from you my friends

  • Dear Hollyboo Please hang on in there I was diagnosed with Non Small Cell Lung Cancer on my right lung in 2000 after a late diagnosis due to a clerical error! But that's another story in itself I had my right lung removed 02.10.2000 and I'm still here. I was diagnosed with COPD in 1996 My first 12 years was as if I had nothing was wrong with me but since a very bad infection that I got while I was in hospital for an outpatients appointment in 2012..... my lung function has declined but it's nothing to do with the Ca diagnosis From July 2016 I've been on the Active Lung Transplant List at Harefield Hospital so I'm still hanging on in there!!!!! I got a call for a transplant in January this year but the donated lung (I'm only having a single lung transplant) failed to pass all it's tests for transplant.

    I believe I know the worry you're going through I know everyone around you is devastated When I didn't know what was going to happen - only that I had lung cancer - a friend said to me, "Nothing's set in stone" That meant so much to me. It was such a comfort. I hope it can be for you, dear Hollyboo "Nothing's set in stone"

    Big big hugs and I'll be thinking of you very often and wishing you all the best - the very best

    Petto X X X

  • So sorry to hear your news. My prayers are with you.

  • Hello so sorry to hear of your plight I hope you get good results from your follow up scan

    On here we are all supportive so you can rely on us to help in any way we can

  • I do not know how you feel as we are all so different but the the best thing is to get angry with the cancer and not let it take you down. Easier said than done I know. There are great advances of treatment now so make sure you specialist is clued up with what’s out there.

    Different cancer but my Mother ,Father and eldest son all had leukaemia My son has had a transplant and doing okay. My parents were not so lucky but had good lives and lived to 84 and 94 years.

    I have multi-conditions and that has its own problems of departments not talking to each other!

    PMA

    Be Well

  • so sorry to hear you are having such a rotten time try to keep positive. I send you a big hug x

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