Tomorrow I have a consultation at UCLH to discuss my recent CT scan and treatment options. I had a routine consultation two weeks ago after a blood test. They informed me that I would need chemo within the next year. I felt unprepared for that news as my bloods were exactly as expected, i.e. the white cell count is doubling every 10-12 months and I have no symptoms.
Chemo will consist of two drugs given in six, monthly cycles for six months. Each cycle consists of two consecutive days of chemo.
This will knock out all my white cells both good and bad so I'll have no immunity for 7-10 days. This will make me especially prone to viruses.
For two years after the start of the chemo, I’ll also have depleted immunity making me prone to bacterial infection.
Tomorrow is my chance to present my thoughts.
I accept that I have limited knowledge and experience so my perspective has to be guided by the experts. My role is to convey my preference and adapt it with their guidance.
Working on the assumption that I continue to have no symptoms I would prefer to start treatment in March 2024, one year from now.
This would give me the opportunity to have the operation to fix my abdominal wall hernia, which is getting worse. I’ve had one strangulation event where some fat gets through the abdominal wall and its blood supply is interrupted causing extreme pain across the whole stomach. When this happened I called NHS 111 and they called an ambulance. Fortunately I was able to Google the necessary first aid and by applying ice, I was able to shrink and return the fat. I usually have to squeeze the fat back c.50 times a day unless it becomes strangulated. Hernia’s don’t heal themselves and the prospect of having an emergency operation during Chemo or after with a depleted immune system is scary.
Get the hernia op. done first to prevent op. during chemo or with poor immunity.
Get fitter / stronger prior to chemo.
Have chemo during summer when there are less viruses around.
Build my therapy practice for financial support.
Reshape my dance teaching business to cope with my absence.
Prepare my home / family
What new information has come in from the scan? Spleen size / hernia size / lumps?
Will delaying treatment increase the risk of the cancer spreading to other organs?
Will the chemo be less effective with a delay?
What stage am I and what does that mean?
What is their estimated survival rate?
What have I missed?
Would delaying the 1st treatment cycle effectively offer me a year extra life?
I feel heard. The plan is now to wait until March 2024 unless symptoms dictate otherwise.
The CT scan showed the spleen isn’t too big and it showed the hernia.
The main concern is my haemoglobin levels which are low as they are being squeezed out by the white cells. This will lead to anaemia i.e.
Pale or yellowish skin.
Shortness of breath.
Dizziness or lightheadedness.
Cold hands and feet.