My Ovacome
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Pet Worries

I thought I would post an update.

I had an indwelling Pleural catheter about 4 weeks ago and the district nurses having been coming out most days to drain me.

It has been hard getting the balance right between frequency of visits and volume. At first it seemed that as fast as the nurses were draining my chest the fluid was coming back again. We tried increasing the frequency of visits then we tried using bigger bottles.

Gradually the drains became more painful and the nurses were getting less off at each visit because I couldn’t tolerate it.

I had a CT scan on Thursday that showed my pleural effusions had increased since my last scan but the solid part of the cancer has mostly remained stable. My oncologist was prepared to step in and offered me weekly taxol just to try and get on top of the effusions.

I have said not yet because I think it would be a short term fix. I am still waiting to hear from the consultant radiologist who is currently on leave. The reason this is taking so long to sort out is because it is a very rare condition and not a very common technique. I get the impression from things that were said in my oncology appointment that the team are not hopeful of its success. They may well be right but it’s a risk worth investigating.

Immediately after seeing my oncologist I then went over to another hospital to see the pleural team. I had a chest x-ray which confirmed the fluid on the right side of my chest has much reduced and the left side (which we have done nothing to yet) has remained stable.

We discussed doing something with the left side. The chest docs think there will be little benefit from treating the left side as it is a smaller effusion. I feel that the combined volumes probably are contributing to my breathless and if we tackle it now we can stop it getting worse in the future. Therefore I am going in next week for 4/5 days so they can drain and talc it.

The district nurse came yesterday afternoon to drain the right side and it was pretty slow and it took ages to drain off 350 ml. Therefore we decided to see how I get on with drains every other day. I am still getting breathless but it’s hard to say if it’s the right or left side or a combination of both. However it is more manageable than it has been recently.

I have also been getting a lot of right sided back pain most of the time and this was getting worse during drains. The doctors don’t really know why I am getting pain the drain itself should not cause this. They have hypothesised that because I have had an effusion on the right side for a long time that my lungs might have become ‘stiff’.

My GP prescribed some co-codomol for me and today my pain seems to be under control. I am slightly worried that there may be some permanent damage to my lungs so I may never breath normally again.

The OT from the palliative care team came out to see me last week. She has arranged for some equipment for me such as perch stools, raised toilet seat and a mattress adjuster. It is amazing how much difference this equipment has made. I find bending and lying flat really uncomfortable. Last night was the best nights sleep I have had in weeks. I managed to sleep through until 6 am.

One of my other pet worries is dealing with the symptoms of the cancer spreading. My oncologist talks a lot about treatments and side effects of treatments but we have never really talked about the consequences of living with cancer and symptoms from the cancer spreading. This past year the cancer has spread through my lymph nodes into my chest and neck. This year I have had ongoing problems with my sinuses, throat and ears. It has been driving me nuts I have been to ENT have tried various nasal sprays with limited success. Wednesday it was really bad I sounded bunged up and I was having trouble with my left ear. It did subside after my chest drain but that may just be coincidence.

Other good news is I have been awarded PIP for another 3 yrs so I get to keep my car. I would never get to all these appointments without it.

Apologies for rambling but thanks for reading xx

17 Replies
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What a great update. Did you have talc treatment before? I was trying to remember, blame my drugs not my age lol.

Have you asked to be put in touch with other people being treated by your consultant who are having drains for effusions? I’m in touch with some people in my position who are being treated by the same consultant and comparing notes has been eye opening!

Much love as always

LA xx

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They tried the talc on the right side but because it is a chylothorax it has a lower success rate because it’s very greasy and doesn’t dry out enough to work.

Chylothoracies are so rare it would be difficult to find another patient I suspect.

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I treated myself to lunch out today and I even managed to finish my sandwich

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Great to hear the good news that you get to keep the car!

Hope your consultant radiologist is back from leave soon.

Have the district nurses sorted out yet what best to do with the stuff they drain? I remember you were trying to deal with it yourself.

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Yes we can put it in the general waste

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That's a lot for you to deal with. Glad the sandwich hit the spot for you.

XXOO

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Hello - lovely to read your udate , have been thinking about you. Really positive news on your PIP and keeping your car something to keep you positive and mobile. What was in your sandwich ? Hope it was one of your favourites. Take care big hug 😘

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It was a reuben so salt beef, cheese and sauerkraut so a total no no on my low fat diet but heaven. Last I had one I only managed half of it so was really pleased to finish it this time

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Way to go 💕

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Just love a Reuben, the way I figure it is that if you enjoy it, if it’s not hurting you and it’s tasty then have it and if you think about it it’s got cabbage in it so it’s one of your 5 a day 😊. I’m really glad you can keep your car but sad your having such issues with your effusion, hopefully they will be able to resolve this and lessen your symptoms very soon. Hopefully the hospital stay will help with this. Doesn’t a nights sleep make a big difference? I hope you’re able to continue to sleep well.

It would be good to speak with other people who have circumstances similar to yours, it’s amazing what we can learn from other patients that sometimes the medics don’t either know or don’t tell us, like Lily says you could ask if you could be put in touch with them, is there a group on health unlocked for people with a cylothorax? We all know how useful our OC group is.

I’m glad the OTs have been able to provide you with equipment to help your daily living and make it easier.

Let us know how you get on in hospital. Big hugs ❤️Xx Jane

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A chylothorax is really rare. I think the probability of finding another patient to talk to is going to be unlikely

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I’m sure there was another lady on here who’d had a chylothorax, Scardycat, but I can’t for the life of me remember who. I’ll have a think...

Lots of love to you, Vicki x

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She had a Chyle leak into her abdomen following surgery. She was on a special low fat diet for a few weeks then it resolved itself.

My situation a very different as mine is leaking into my chest and has been caused by a malignancy not surgery

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Got it! Lisas66 had a chyle leak. Probably not quite the same thing?

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No exactly and we have spoken. It’s the same stuff but hers was leaking into her abdomen following surgery

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Many prayers and much love to you.

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Brill news re pip

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