We started out so positively reading everyone's experiences of lung surgery on here and how quickly everyone recovers after RATS but sadly our experience has not been like this.
My Husband had neoadjuvant chemoradiotherapy for a large 94x84 mm aggressive NSCLC in his left upper lobe. Fortunately, he had a good response to the treatment and the tumor shrunk to 57x23mm. He tolerated the treatment very well and half way through was actually feeling better than he had before he was diagnosed.
His thoracic surgeon decided that as there was no spread he was suitable for surgery and he had a RATS lobectomy on 14th May. He recovered well in the hospital, was not in too much pain and was up and using the exercise bike on the ward the next day. His drain was removed and he was sent home on 20th May.
On his first day home he was tired but not in too much pain. He took the prescribed pain meds to enable him to complete the breathing exercises he had been given but otherwise was ok with just paracetamol. The next day he was tired and didn't want to do anything and by the evening he was quite unwell. He was also suffering from constipation and the laxatives he was sent home with did not touch it. Early the next morning his 3rd day at home he was very ill, hardly able to move and confused, so much so that I called 999 and he was rushed to the local hospital with suspected sepsis.
Fortunately, it wasn't sepsis but pneumonia. He was taken off his pain meds due to the constipation and just left with paracetamol and put on strong IV antibiotics. Once the pneumonia started to subside on the 27th May he was sent home as they needed the bed. The whole experience at the local hospital was traumatic and like something from a news clip on a third-world hospital. The Drs refused to contact the team at the cancer hospital for guidance from his surgeon as to how to treat his condition in light of the surgery and when I contacted the surgeon's team they said they could not interfere and the local hospital team would have to contact them. Consequently, they (the local hospital) mostly ignored the fact that he was less than a week out from having half of his left lung removed. They refused to change his dressings as they hadn't applied them and I ended up losing it at one nurse who actually lent on his scar to reach over and take his blood pressure. There was no support or even understanding that he needed to be able to do breathing exercises. One Dr came by and started talking about kidney infections until I pointed out my husband had pneumonia and he realised he had the wrong patient. Another time a nurse tried to pour him water to take some pills into my empty used costa coffee cup and couldn't understand why I wouldn't let her. (Bank holiday weekend so even my complaint to PALS went unanswered).
Its 5 weeks since his op and his recovery seems to have stalled and reversed. He is worse now than he was when he first came home. The anti-biotics gave him oral thrush and have stripped the skin off the inside of his mouth, he is tired, has no appetite, feels bloated or nauseous most of the time and his pain shows no sign of getting any better. He cannot now take anything codine-based or morphine due to the constipation so is left trying to exercise with only paracetamol which he says does nothing. His breathlessness is not improving. He has developed pain in his arm which wasn't there at first and numbness in his left hand. Any little exercise he does manage leaves him feeling dreadful and sick.
I feel so sorry for him and worried sick. He lost his Dad in April and the surgery was delayed by a week so he could attend the funeral, then his beloved motorbike, which we bought so he would have something to look forward to after he recovered has been stolen.
We have had no follow-up from the local hospital about the pneumonia and no follow-up appointment from the surgical team. Lung CNS says they can't help as we are now under the thoracic surgery team. GP is worse than useless as their lack of action is why the cancer was so large when it was disgnosed. We knew it was a big op and the recovery would be tough, but we now feel misled about how bad it is. We just feel abandoned and let down by both hospitals. We have no idea how his lung is healing if the pneumonia is gone, if it has damaged his remaining lung or if any of his symptoms are a cause for concern. We don't know if the op was a success or not, if he will get any better or if this is how it will be from now. He is now so down and says he wishes he had not had the surgery and had just taken his chances without it. He's gone from feeling perfectly well to feeling poorly, miserable and let down.
Can anyone who has had a similar RATS lobectomy tell us how quickly you had your first follow-up appointment, did you have chest x-rays etc to check healing? Did anyone have similar complications after surgery and did you eventually recover?
What an horrendous experience for your husband and yourself. Unfortunately I cannot advise you on the outcome or recovery time of RATS surgery as I refused it when offered. I was diagnosed with left upper lobe lung cancer last year in August. After all the usual tests, i.e. CT scans, PET-CT scan and lung biopsy, the cancer was confirmed and I was given the option of surgery. Fortunately my cancer was considered a "lesion" not a tumour as it was 31mm. I researched the surgical option, or, radiotherapy alone. Personally, I thought the surgery was a bit drastic so I opted for radiotherapy.
I don't know where the hospitals are that your husband was treated at, but they should be ashamed of themselves, as well as your GP. I was under two hospitals, the one I had my radiotherapy was 50 miles away, but both liaised with one another during my investigations and treatment.
I think some serious complaints about your husband's lack of care from both hospitals are in order, I hope your husband gets the help and attention he really needs, also I hope someone on this forum may be able to help you in anyway regarding advice.
Best wishes to you and your husband.
