Mesothelioma

A place for people affected by mesothelioma to support one another, ask questions, and share their experiences.

Am I being unrealistic to expect to hear from doctors quicker

Q8T
Posted by

Our world was turned upside down on the 21st of May when we were told my mom ( age 69) had stage 4 Ovarian cancer, she was told further tests would be carried out and everything was you will get the results in up to two weeks. One biopsy and blood tests related to the biopsy were done.  Finally last  week Tuesday we received 2 calls one to tell us she had an appointment in the respiratory clinic Thursday and  one for  Wednesdays  for the Gynaecological Clinic  and it was during this appointment one of the consultants ( who had volunteered during the MDT meeting) broke the news to my mom that she didn’t have Ovarian but Peritoneal Mesothelioma. We left reeling from the news as we had no idea what it was.  We were totally unsure of what Thursdays meeting would entail and went with some trepidation. We met with a great doctor and specialist nurse who took my mom and I through what exactly she had and said her file was being referred to Basingstoke.    The MDT team there apparently meet the 1st Tuesday of the month and here we sit again waiting. Am I being naive or unrealistic to want to get a move on with knowing what’s in our future.  I am watching a once active and vibrant woman become frailer and it just doesn’t seem like there is any sense of urgency. Is this their subtle way of saying there is no urgency to get treatment as it’s not viable.  

KTatHome
Posted by

Hello , I'm so sorry that you and your Mum are going through this I have a different cancer but remember how slow time went between coming out of hospital and treatment starting. I don't know if anyone here has the personal experience to answer your no urgency question or whether you want to talk things through with the Macmillan Support line?

You must be thinking its a long time til Tuesday but realistically MDTs do have set days to meet, and that meeting is at least just a few days away now, so I hope things move quickly for you from now on. If you do think that things have gone wrong up to now though there is usually a Patient Liaison team in each hospital to talk things through with and to think about making a complaint if you feel they have missed any NICE.org.uk timescales. You might find the Macmillan information helpful on peritoneal-mesothelioma or making-a-complaint

You mention its hard watching your Mum become frailer, and who wouldn't, so I hope you are getting support for yourself. Have you considered looking at the Family and Friends group or the carers group  their are lots of lovely people on here who might be able to give give you their experience of coping with the uncertainty and waiting. 

I have personally found the information and support pages on coping emotionally very good on Macmillan so I hope you don't mind me putting in one more link to when someone close to you has cancer.

Best wishes

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

Q8T
Posted by

KT,

thank you for the links you have shared, I am going to look into them further.