I’ve ( for the first time) dialled Macmillan helpline but put the phone down before it was answered because I don’t think I’d make sense.
I need to talk and realised I have nobody I can ‘dump’ this on.. nobody I’d want to upset.
Im angry and scared and emotional.
I have stage 4 peritoneal cancer.
I have pleural effusion. Being breathless has become the norm. but I noticed a marked worsening after the flight home from Germany, I found it very difficult walking through the airport.
Today I had 1.5 litres of fluid drained from my left lung, it’s the max they can remove in one go, they had to leave about 1 litre in there.
I know the fluid contains cancer cells. It was drained pre debulking operation in May this year.
Today I was told my left lung has collapsed because of the amount of fluid & amount of time / pressure, there’s a good chance it will not ‘re inflate’. My right lung is compensating well, oxygen levels etc normal.
I was told that there is a procedure which can stop the fluid building again by basically getting the pleural walls to stick together, but I’d likely not be able to have that done. I’d likely be given the option of a drain.
So when I got home I read up on both procedures & found that being offered the more permanent version was dependant on life expectancy.. and that’s floored me.
Im angry with my oncologist / consultant for not mentioning my pleural effusion, ever. Surely she could have mentioned flying could affect it? Shouldn’t she have told me to have it drained pre flight? . I know that’s ridiculous, I know I should have been on-top if it. Why the heck didn’t I go and have it checked / drained myself?
This September I was hospitalised with acute proctitis (I’d been telling my oncology team about probs / pain etc with my bowel since May). When I saw my oncologist after the hospital stay, she was going to take me off Avastin as she put the recent hospitalisation down to that life prolonging drug. I had to tell her that the bowel symptoms started months before I went on to Avastin. I’d mentioned them at every consultation & even if not all the consultations were with her then surely it should have been recorded?
She then checked my records / colorectal bits. Came back & said I’d had c-diff during my recent hospitalisation! I said I’d had zero c-diff symptoms. She then said it showed the c-diff gene but that that would account for all the rectal pain / proctitis…… what ?
A week or so later I got hold of my discharge notification from the hospital, it mentions stool culture findings were NAD. This was written by the colorectal consultant.
About the same time Id asked my cancer hospital for a quick rundown of recent medical history to be written for my travel insurance & doctors in Germany.. The resulting letter stated that I’d recently been hospitalised with acute sickness and diarrhoea!! C-diff etc .. No I had not.. I’d been hospitalised with acute proctitis, the symptoms being childbirth like pain in my rectum! . I’d not vomited at all & had one isolated occurrence of diarrhoea midway through my hospitalisation.
I feel lost. This consultant is actually fabulous, she fought for me to have the huge debulking operation.. She’s the one I’ll have to turn to to try for more/different treatments etc. but I don’t know who to trust anymore..
I know all NHS staff are overworked, knackered and stretched to breaking point, but does that mean that patients have to basically take on responsibility for their own care, watch constantly for possible errors and are unable to relax into the care we desperately need when most vulnerable ?
Hi Tina, It's horrible when things arn't going right .if I'm not happy with the responses or the nurse or Dr. get my details wrong I tell then and put them right. We shouldn't have to but as you say they are busy. A good cry does us good on down days, we all get them, when we are scared, worried . Be kind to your self and take care. xx
Hi Tina, So sorry you are feeling the way you are just now but we all do need a good cry sometimes! I agree with Moi, If I'm not happy with the way I'm being treated or not being informed fully of what's happening, I do take it upon myself to let them know. Like the other week when I was at the Lymphodema Clinic and the NEW Senior Nurse told me I should be taking anti inflammatory meds as my joints were very swollen. I asked her if she had read ANY of my notes and when she said "of course I have!" I then said well will you phone Professor Stanley at the Liver Clinic and let him know he was wrong to tell me NOT to take them because of my cirrhosis! Her face went red and she excused herself, left the room. When she came back she apologised and said they were so busy the clinic had almost double the patients it was meant to have and she hadn't had time to read my notes. I told her it was just as well I oversee my treatment myself and it was just as well.
I'm afraid it's a sign of the times, we have to keep ourself fully informed as mistakes easily happen. If you say your Consultant is good, I would be asking for a consultation ( face to face or phone) with her to ask why you weren't warned about the risks of flying etc I'm glad you enjoyed your holiday and hope this hasn't put a dampener on it!
Love Annette x
I'm sorry to read that you are feeling so frustrated and let down. One episode of this happening is aggravating but you seem to have had a series of them. Would it be worth trying to discuss with your specialist nurse as your notes are incorrect? Does your hospital have a PALS (patient liaison service). They would investigate for you in a professional manner and would look into any misunderstandings and their correction. Once you are feeling a bit stronger, try to ring the Macmillan helpline and get some advice, they are excellent and very kind and understanding. This is the link to contact https://www.macmillan.org.uk/about-us/contact-us
I hope you are feeling better soon.
I am a Macmillan volunteer.
Macmillan Support Helpline
0808 808 00 00
7 days a week between 8am -8pm
I've read your post and you certainly are making sense, you have been put in a horrible situation where you have found that you need to question the people you need to trust because they are treating you. I hope that you are able to talk to your consultant and tell her how let down and devastated you feel. I have always found my liaison nurse a really useful person to talk to as well. I hope that you find some good support. Big hugs.