Since the trial has stopped my breathing has got worse although the rest of my cancer has stabilised and my CA125 has gone down so its not all been bad news.
I saw my oncologist first thing Wednesday morning and he would like to put me on watch and wait and not give me any more treatment until my cancer progresses on CT. This is a bit scary as treatment had been slowing down the chylothorax and I was feeling very breathless. However I am under a specialist hospital for the management of my chylothorax.
We discussed the options that had been proposed for my chylothorax. I want to explore the embolisation further but was concerned about the radiologists lack of experience. My oncologist’s opinion was that it is such a rare condition that I am unlikely to find anyone locally with more experience and I should ask him about his experience of embolisation in other vessels. I felt this was a good idea.
After my appointment with my oncologist I had to drive over to see the Pleural Team. Thankfully they did not keep me waiting too long. I saw the consultant explained the situation with the trial and that my oncologist is hoping they can do something definitive to sort out the leak in my thoracic duct.
She did an ultrasound on my chest that confirmed it had filled back up again so they decided to fit an IPC so that my drain can be managed at home and I don’t keep having to have lots of painful procedures and also refer me to the consultant radiologist. I felt happier that there was a plan in place this has been dragging on since October.
The catheter was fitted into the side of my right chest under a local. I was able to drive myself home afterwards although one of the nurses did not approve of this or that I would be home alone but the doctor was happy to go ahead. The first night was awful as my side felt really bruised so I did not sleep much and I also felt really depressed.
The next day I decided to go to my mum’s she lives near by. There wasn’t a district nurse booked to see me until Friday and I rang the district nurse service to confirm this. However whilst I was at my mum’s the doctor rang me to see if I was feeling ok. They had drained off a litre whilst I was at the hospital but apparantly there was still quite a bit of fluid in there. She wanted to know how I was feeling and if I wanted the district nurse to come today. My breathing had eased and I wasn’t in quite so much pain and I also wasn’t at home. Then the district nurses rang me at 3 pm to say they were at my flat so I had to explain to them where I was and that I was feeling ok. I also said that I had not been expecting them until Friday.
Thankfully they came back Friday and took off another 500 ml. There was a bit of confusion about how we would dispose of the bottle and it’s contents. It is a new system for them and the bottles are completely sealed so not easy to empty down the toilet. I naively assumed they would take it with them but I guess it would end up stuck in the boot of their car whilst they drove round seeing patients so it sat on my living room floor in a bag most of the weekend.
Another district nurse came on Sunday and took off another 500 ml but she thinks it is starting to taper off so did not need to come back until Tuesday. I mentioned that I had a GP appointment for some bloods Tuesday am and I told her the time. She started to ask me if I could go to a clinic for the drain but must have thought better of her question. I guess I am not her typical housebound patient and everyone always says I look well. I don’t think I could have coped with driving to the other side of Manchester every other day.
I am hoping that is will start to taper off on Tuesday and we can start to go longer between drains. I really want to go to Sharon’s funeral on Thursday and I am already stressing about the hour long drive. I never used to be afraid of going places on my own until all this happened.
The district nurse did not know what to do with the bottle either so now I had two bagged bottles on my lounge floor. The hospital had said ask the district nurses about their clinical waste disposal or cut the tops off the bottles empty the contents down the toilet and put the empty bottles in the genreal waste. That is what I have ended up doing I cut the blue valves and emptied the bottles down the toilet. The fresh warm sample was easy enough but the bottle from Friday had cooled down so the fats had separated from the liquid so that was harder to empty as well as pretty disgusting.
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ScardyCat40
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Palaver is right! Fancy having to deal with the bottles yourself. I can’t say I’m very impressed with the District Nurses. YOU, on the other hand, are very impressive! Still driving yourself about, still fighting - you’d be super-human if you didn’t get a bit depressed sometimes but you always seem to manage to talk yourself out of it.
Here’s hoping things start to improve a bit for you, lovely to here from you.
Hope you’re getting some sunshine up North, it’s lovely here down South!
I have decided to treat myself to breakfast out and break my low fat diet. Sadly there is no one else to drive me so I would end up either using public transport or maybe going to a local charity but they both require organisation and the latter requires notice
Yes, it does feel good to break the rules occasionally, doesn’t it! Maybe you having to drive yourself helps to keep your brain active, and maybe it boosts your self-esteem to know you are still have some independence - just looking for those silver linings!
Oh dear, you poor thing, you have been having a rotten time, haven't you? I do hope things go more smoothly for you now. How incredible you were left with those bottles. Glad you found a way to dispose of them and their contents.
Keep smiling, sending a big sympathetic hug, Solange xx😊
What a saga for you!! You are brave doing all this by yourself. Can you rope a friend in to drive you? What I wanted to comment on was two (nurse-type) things, speaking as a former nurse. Clinical waste should be disposed of at the hospital (incinerator) by the DNs. I think it is not acceptable for you to be left to do it. Also why can’t the DN do your bloods when she comes to do your drain? I know they are very busy but what has happened to ‘total patient care’ ?? At the very least, your GP surgery should dispose of the fluid; sealed containers should not be cut open!! (I am going mad on your behalf SC!!). Wish I could help more....Linda x
Thanks but the hospital said it was ok to cut them open. I am ok to drive the short distance to my GP surgery it’s just to check the level of my pneumococcal antibodies after having the vaccine recently.
At least he risk of sounding sad but I don’t have friends like that. I have moved around a lot so whilst I may have many acquaintances not many friends.
In my family my brother and my Dad drive. My brother works and is the main carer for his kids as his wife works full time. My relationship with my Dad is complicated and in more recent years his wife has had health problems of her own so that has placed more responsibility on my Dad.
I am still able to drive myself that is a good thing
you have done so well...thank you on behalf of all of us for persevering on this trial...and with any luck you will gradually recover....love Chris xxX
Hi, It is good in some ways to have that independence of being able to drive but do take care you are safe to do so.
I have support from my family but I've been having treatment now for near 4 years and been on chemo most of the time, so I do try to take myself to appointments to give the family a break I've just started using the community transport, as you said you have to give them 3 days notice.
I also agree with the ladies you should not be expected to dispose of the bottles.
It would be so much easier if you had more support but I know you have will find the strength to fight on,all the best with your treatment plan.
This past year being on a clinical trial has meant a lot more hospital appointments than normal. Recently I have had clinic every 2 weeks, I have been having echocardiograms every 2 weeks at a different hospital, then every 8 weeks I have a CT scan. On top of that I was referred to a specialist hospital for the management of my chylothorax and I have had follow appointments there every four weeks but the hospital is across the other side of Manchester. I also go to my local hospital to see the pallative care team.
I was diagnosed 7 yrs ago with low grade serous it has been exhausting but being a slower growing cancer you can feel relatively well. I would never drive against doctors advice but being able to drive has enabled me to take part in this trial. The three big changes I have experienced over this last year has been increasing breathlessness, bowels becoming more sluggish and a reduction in appetite. I suspect the last two are related as I eat better when I move my bowels.
I responded to the clinical trial it only stopped because it was effecting my hearts output. If it wasn’t for this complication with the chylothorax I would be off having a break somewhere. Driving is one of the few freedoms I have left.
Crikey Lorraine - what a story. You are doing so well, bravo. I imagine the breathing issues are terrifying but it is VERY good news re the cancer, though perhaps tainted by the other stuff. Please keep posting and I really hope that things settle down and you can enjoy some treatment free time. - Nicola
Hello - been watching your updates and support posts. Quite amazing how you have managed the rigorous trial. I was turned down due to small bleeding from diverticulitis/bleeding from tumour. I was very disappointed as I have heard the good responses to the Trial drug. As you know I am on the alternative Tamoxifen and like you now, on a wait and watch.
Keep reminding yourself, how well you have done, and how much you now know all helping you to go forward. I chuckled at your breakfast treat, enjoy. Take care, know that you are surrounded by love & support - even if at times it feels you are battling alone. You have proved you have a great deal of strength & will power - the comments on this site tell you so - well done YOU. Be Good ..... 😘
What a horrible time you have had. I hope the fluid starts to settle down for you now, I understand the worry of driving an hour on your own after all you’ve been through.
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Never thought that I would be writing this post
Good news today after a sad weekend
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