Emotional Rollercoaster

So sorry you are on a roller coaster - i too have been stuck since early sept as to whether i am Stage 1, Stage 1 (x2) or stage 4; so i understand the confusion - it is completely mind-messing and of course all the extra tests also delay treatments which is frightening. We have had some awful meetings where they have told us i have lung Mets and am stage 4, and letters too, and then someone else says it might be stage 1. I am not sure that they really understand what those meetings are like for the patient and whoever is with them.

i have asked for my records to get a second opinion as no treatment (current situation as my CT biopsy was inconclusive due to the physical location of the largest lung node and i am in a queue for a lung resection which is still a few weeks away apparently as need heart tests etc) seems to be the worst option of all!

I hope you get clarity urgently - i think this is a dismal way for things to be handled

Hi Tangle123

I'm sorry to hear you are also in the same position and hope things go well for you and you get the best possible outcome.

Wishing you all the best

Update

I did not receive a call on Friday, as told I would by the McMillan nurse and spent the weekend in a state of high anxiety. My blood pressure this morning was 192 over 104!

I have just left a message for the Nurse but to be honest I'm not hopeful of a call back today.

I realise I'm not the only patient but only ask that they do what they say they will.

The worst thing for me is not knowing what I'm dealing with and by not calling when they said they would just makes it worse

The Doctor has said he suspects Malignant Pericardial Effusion and that will mean stage M1A but it's been six weeks and I still don't know.

That's it - rant over!

My heart goes out to you it’s awful waiting in no man’s land for results I know this . I had a hospital appointment to receive my results I had a phone call two days before to cancel this appointment I asked when will I get a new appointment and was told I will be put on a waiting list? For an appointment so they expected my to wait until a patient cancelled and that appointment was given to someone on the list where was I on the waiting list ? So one week later still no news of an appointment I rang PALS the stress I was feeling reduced me to tears. Same day I had a phone call and was told my results over the phone and I was given an appointment. 

Another Update!

I have now been told I have Stage 2 Lung Cancer and have an appointment with the surgeon on Friday with an operation within two weeks.

The consultant said subject to what they find he does not expect me to need chemo and the operation should remove the cancer.

They are no longer concerned with the fluid as it has not increased around the heart and has subsided within the lining of the lung

Does anyone know how long I can expect to stay in hospital and what I can expect during the recovery process?

I am self employed and if I don't work I don't earn!

I had my operation on the Tuesday and was home Friday. I went home with a drain which was in place 10days after it was removed I felt that’s when I began to feel I was getting better . You may not have a drain or it may only be in place a few days . After the operation I wasn’t in much pain all managed well . Day 2 I was walking about the ward going to the toilet having a shower the doctor was happy for me to go home on day 3 . 
it’s great news for you no chemo I am the same no chemo just a scan at 6 months then each year for 5 years 

Great to hear!

My consultant has also said I will be monitored for 5 years

I am glad you have a plan now - my op date has come through for next Thursday; they told me 3-5 days in hospital. No idea on working though - I can ask to continue to work from home for a while longer but am assuming will need a couple of weeks off?

I'm pleased you've also got a date!

I will ask the surgeon about working but I'm reading 4-6 weeks because I am an energy assessor and have to visit properties. 

Hi Johnwhu, that sounds good news with the hope of a good future. With these operations they can bring you down unless you are very physically fit . Its quick so I assume you are reasonably fit. The stay in hospital may not be long but working after would of course depend on your type of work as self employed. You can claim some benefits to help with cash flow but you may not be able to do some of the usual physical activities due to the lung needing to heal like any operation.  Sorry I can't be of much help. I used to  have an insurance when I was younger which covered a year off work  if ill. Every best wish , why not contact  Macmillans  financial advice team where you can discuss in more detail? Good luck.