Yesterday (Tuesday) I visited the hospital for my surgery pre assessment. I am booked for surgery tomorrow, Thursday 11th May to have the fluid drained from my left lung and then the lung sealed. I could not have asked for a better service. However, I’m a coward and I am working hard to psyche myself up for the whole procedure. I’m not helped by the outcome of the meeting that I had the day before, (Monday) with the lead consultant of my haematology team. He informed me that my tumours had not reduced enough in the three cycles thus far so I will need to be put on a more aggressive chemotherapy. Instead of R-Bendamustine I will have R-CVP. This will incur more severe after-effects and include hair loss. I have not consented. Firstly, I have not had three full cycles due to allergic reactions and complications and secondly I have lost confidence in chemotherapy for stage IV incurable NHL. I am currently consumed by doubt and fear, but the concerns with regards to chemotherapy must be contained whilst I face the procedure to drain my lung. The fluid build up is a symptom of my cancer.
It was the problems with my breathing that led to the discovery of Non-Hodgkin Lymphoma. I had started finding myself breathless following a virus I had contracted. After presenting at A&E thinking I might have lung cancer it didn’t take long to be transferred from Respiratory to Haematology. However, since the beginning of it all the respiratory doctors have constantly urged me to have surgery to seal the lining of the lung to prevent the constant build up of fluid. This procedure has been prevented by the consultant haematologist who believed that the chemotherapy would reduce the tumours and the lung would right itself, negating the need for surgery. I never felt the respiratory team shared this belief but as a coward I was more than happy to go along with non-action. However, not having this treatment has led me to have four aspirations (a relatively quick outpatients process which drains up to a litre and a half of fluid under local anaesthetic) and a full drain (four litres of fluid) when admitted to hospital with a lung infection following my first chemotherapy. I was not prepared for the full drain. It was excruciatingly painful. Tortuous.
Each aspiration has taken more time for me to recover and following my last one which was two weeks ago, I am feeling pleased that the respiratory team pursued their avenue of treatment and put pressure on the haematology team. However, the procedure which is done by keyhole surgery demands a full drain in order for the sealing to work. AAAAgh!!!! My memory of the last drain is still very clear and the thought of undergoing all that pain again fills me with dread. I did explain my anxiety to both the consultant and nurses involved with the surgery and they have assured me that they understand the pain and have every confidence that it can be controlled. I hope so.
Following my surgery there seems to be another difference of medical opinion between respiratory and haematology expertise with regard to my recovery. My haematology consultant wanted me to commence with my third chemotherapy cycle next week, just days after surgery. My husband advocated that this was too soon and so it was delayed by a further week. However, in discussion with the staff at the hospital where I am having surgery it is clear that they believe I need more time to recover before chemotherapy. What is best?
I have to arrive for surgery at seven tomorrow morning. Worry, worry, worry! At least there won’t be much traffic at this time and hopefully easier to find a parking space (the hospital is in the west end of London). After surgery I will have two tubes coming out of my lung which will remain for two days. Worry, worry, worry! – this is when the pain really kicks in. I will then have physiotherapy worry, worry, worry, and be observed for four days and if all is well discharged. I have a selection of books to take with me and have downloaded the complete series 6 of Downton Abbey. I’m assuming I will survive surgery and will be fit and able enough to read books and watch TV. That’s me thinking positively!
Added to this, today is my 9th wedding anniversary. What can I say? This is where it really hurts. My husband’s card to me was perfect and says it all. Like all couples we never planned for anything like this. We try so hard to act ‘normally’ but it’s difficult. Sometimes the tears just have to roll.