Still waiting…

So sorry to hear you are still waiting and your husband is in so much pain. You must be feeling incredibly upset, frustrated and angry that it’s taking so long. All I can say is that the amount of pain isn’t necessarily any indication of the stage/severity of the cancer. You can have stage 4 with no symptoms. The problem with the pain is being unable to  switch off from it so you are in a constant state of anxiety. It really sounds like you need  some support. Do you have contact numbers for your respiratory team? Is there someone you can talk to? Is there no chance of getting a MacMillan nurse?  Was the palliative care team for pain relief of no help. So sorry you’re going through this and I don’t understand why everything takes so long  - especially with cancer diagnosis. Don’t  know whether it’s still the knock on effect of COVID. It took me months just to get an initial GP appointment but as I’m not in pain I can cope with the waiting. 
Hope you get a proper diagnosis soon. 
Susan 

Hello there, the waiting is really distressing. Can your Gp not change the pain killers till the biopsy comes back. I had my diagnosis in March but it was JUly before I had any treatment.Due to waiting for consultant appointment  and respiratory department trying to get records upto date. Plus waiting for results from another cancer elsewhere, that was put down to anxiety by dermatology. Most hospitals are not on target with waiting times unfortunately . But it seems some of us are kept waiting longer than others as in your husbands case. My main delay was due to Blood pressure meaning my biopsy had to be cancelled and a second one planned.  I guess you have not been  given a reason for delays. You could of course ask PALS to enquire on your behalf, but that's all added stress.  Have you  used the macmillan enquiry line they are very good  and available 7 days a week. Only a consultant can really decide what is best for your husband, the sooner the better don't you think. ? Most of the treatments have side effects too so prepare yourself for a tough journey but hopefully painfree. I am not a classic example sadly I still have not had any treatment for the cancers in my left lung and it is now nearly 12 months since they were first detected. Fingers crossed your husbands results will be through soon and treatment commence.I was given a number to contact the nurse the moment the diagnosis was given. Your case seems very unusual in respect of your husband.Every best wish that change occurs soon. Warmth helps reduce the pain some too.  

So sorry to hear of the pain and delay; I have been told my results (wedge resection Tom as CT guided was inconclusive) will take at least 4 weeks; the respiratory team told me 7 days but my oncologist told me it is taking at least 4 weeks currently - I appreciated the honesty but as the lung was flagged back in late august, it seems a long time

The palliative team have upped ibuprofen to 600mg four times a day, he’s now having Co Codomol 16mg four times a day and 10ml of Methadone three times a day. He also takes Omeprazole. And Cosmocol for constipation caused by the meds. The MDT meeting was today and our results aren’t in yet from biopsy (2 weeks now) so we have to wait another week for MDT if the results are back by then. I’ve called the medical secretary for his chest specialist and she’s expedited the results but still nothing. We don’t have a MacMillan nurse but have a palliative care nurse who specialises in pain now, from today.

Thank you. The palliative care nurse today has slightly changed meds. I’ve thought about Pals but not sure if they can do anything to hurry anything along?

Oh that’s awful for you. I’m so sorry! I hope the biopsy can conclude something. I’d not even thought of that!! 

My fingers are crossed you get results as early as possible and that they are as good as they can be.

Had a phone call today and have clinic appointment tomorrow as the results came in!!! Obviously what we wanted, but now super nervous and overthinking that the appointment is so quick it’s could be an aggressive type of cancer. 

I, like your husband, had a very long wait for treatment to begin, however, I had no symptoms whatsoever. From getting an X-ray on the 22nd August 2023 for a persistent tickly throat after a bout of Covid in May, to beginning treatment in early December 2023.

At the beginning all went really quickly, starting from an abnormal finding in my left upper lung on X-ray, then quickly fast tracked through every test; CT scan, PET scan and lung biopsy, then MDT to determine best treatment. Then things slowed down - two week wait for an outpatient appointment to discuss the MDT decision and subsequent treatment, then another long wait for treatment to begin. All in all my wait from diagnosis to starting treatment was 96 days - the government's guideline for cancer treatment waits is, and I'm assuming it's the same with the new government, 62 days, so you and your husband are not alone in this. Yes, it is worrying that the delay will exacerbate his cancer, I was the same.

Best wishes to you and your husband for tomorrow. 

Ann 

Oh so glad you have appointment and fingers crossed.

i am in hospital for wedge resection which is likely to be cancelled as they don’t have time. One person here has been on the pathway since January - super quick at outset and then slowed right down. the nurses say there are many backlogs 

Hi Ann

At least I know this is fairly normal then. Nicks tumour is in the upper left lung too but is invading the chest wall, which is where the pain comes in.

How did it go after everything? Are you still having treatment?

I hope all is going well for you. And thanks for the best wishes for tomorrow.