Hi All
My name is Kathy - I believe my age is irrelevant at this time . I was diagnosed just about a month ago, after what seemed an eternity but in fact it's actually been a bit of a whirlwind.
In early April I had an excruciating pain on my right hand side extending from the shoulder to just below the ribs. I almost dialled 999 but held off. The next morning I was awoken with a similar but much decreased pain in the middle of my chest. i went to see my GP who luckily for me and based upon the fact I hardly ever visit my GP unless absolutely essential, she ordered almost every test going icluding, bloods, ECG, Abdminal ultrasound and chest x-ray. 10 days later, Thursday before Easter, I received a call from my GP to say something had been found on my chest x-ray and I would be receiving an appointment from the hospital for the respiratory unit. Needless to say I was extremely scared. I received a call from the hospital later that same day confirming a CT Scan on Easter Monday and follow up appointment to see a consultant two days later. Clearly this was bad. Easter Monday? Obviously urgent.
To cut a long story short the consultant was unable to say for sure what the "lesion" was. However please note that the problem was on my left lung and not my right. There was clearly nothing on my right lung! In fact I have had no problems with my right hand side since that one instance of pain! Weird isn't it.
I had a peripheral cavitating tumor on my left lower lobe and it was just under 6cm wide! After considerable research (and based upon personal knowledge having dealt with many claims relating to cancer/clinical negligence over the years) I basically diagnosed myself with squamous cell lung cancer and I was convinced because of the size, its location and the type, I was going to be facing the worst outcome.
My Consultant wanted to do step by step tests to determine type and stage. First was a bronchoscopy which was inconclusive so followed by a CT guided needle biopsy and PET scan ordered at the same time. I had stressed I did not want to be told any news over the phone nor alone. However, shockingly early on aMonday morning, clearly after the multi discplinary team meeting the previous Friday, I received a telephone call from the Thoracic Surgical Team to confirm an urgent appointment to see the surgeon the next day! Remember what I said above, not wanting to be alone nor told on the phone, well clearly this call ignored those wishes and it was obvious I had lung cancer or why else would the surgeon need to see me? I was extremely upset to find out this way. I left a voicemail with the cancer nurses to convey my distress and their administrative incompetency. Any way after much "in-house" discussion the appointment was changed to the end of the week so I could see my respiratory consultant first. As far as I was concerned given all the info I had it was going to be squamous cell stage IV lung cancer but a surgical biopsy would be needed to confirm accurately.
I was right about everything except the stage. It was Stage IIB and they wanted to operate with a left side lobectomy with curative intent. I consented, even though because of the type of cancer and it's location ie. directly adjacent to the pleura I might also need removal of the pleura and two ribs with a chest reconstruction. That could only be determined at the time of the operation.
I was told at my pre op appointment I may have to wait at least 3-4 weeks and possibly longer up to 7 weeks or more. I am aware that squamous cell can spread very quickly once it takes hold and that should it extend to the pleura it will automatically be stage IV not Stage II. I therefore became my own advocate and expressed my fears emailing and ringing the thoracic specialist nurses, and I requested to go on the cancellation list agreeing to accept the first avalable date even if at a day's notice. I also indicated my lack of faith in their efficiency within administration given what had already happened and asked for a guarantee it would not happen again, and I referred them to the NICE guideline on diagnosis confirmation as well as the timelines (ie treatment should commence within 62 days and cancer operations should not be cancelled in line with other elective treatment and stressed the risk that any delay could result in a worsening diagnosis within days or weeks and could be construed as negligent depending on the outcome).
My persistence and insistence appears to have worked and I was very lucky and after being given an initial operation date of 28th June was offered a cancellation date of 18th June!
My operation took place on Tuesday 18th June and I was discharged on Saturday 22nd June 2019! I've been home a week now. It's been hard and there have been ups and downs. I had a high temperature over 38c on Monday and felt quite poorly but after discussion with my GP she agreed to let me try antibiotics before sending me back to hospital. Thankfully they worked and any possible infection appears to have been headed off.
I don't know yet if I will need any follow up chemo or radiotherapy, or the outcome of my operation ie. did it spread to any lymph nodes (4 were removed!), as my post op appointment is 9th July 2019. I'm expecting that I will but a lot of you out there will probably know more than me as to the frequency of this. I will regardless remain my own advocate and question when I am concerned, and push for action if I believe it is merited. I would encourage everybody to do the same, or if you feel unable to do so yourself, ask a close friend or relative to advocate on your behalf.
I consider myself to be truly lucky at this time,my cancer being detected earlier than most due to a completely unrelated incident and a thorough GP. I have been given a chance to beat this monster and I will do everything I can to do so. I don't know what the future holds, but I will remain positive and I am very lucky to have a supportive network of family, friends, colleagues and my manager at work. This has helped to keep me strong until now and will continue to keep me strong. Positivity, self-advocacy and knowledge are the key to inner strength and health.
.
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