The advantage of blogging, you can have a moan or a fret and then close the door on it, or when you are feeling good put it on paper and smile. Today is a rant day, there seems to be so many of them lately, following the pelvic infection and two courses of antibiotics and the boil in the wound infection and course number three of antibiotics, it was off to the doctor today with a pinky discharge which I've kind of ignored because I'm all doctored out but it got a little worse, not loads but a drip here n there had become a couple of drips here and there. My lady GP has gone, of course why wouldn't she just as she saved my life sending me for a scan and I haven't had the chance to say thank you, so it's the slightly older possibly eccentric GP waiting for me.
Hop on the couch and lets have a look, so its speculum time, her face kind of contorted and she came at me with a giant Q tip, ouchy, she didn't like the look of my leaky internal wound and thought it may be an infection (is there anywhere left to be infected?) although slightly worrying when she mentioned leaky from the uterus? It's in the path lab or maybe even the bin by now, but wherever it is I know I don't have it. So it's antibiotics course number four, she even asked which ones I fancied this time???? For five days to take me to my consultant appointment next week, seemed reasonable enough, and was told go straight back if it gets worse.
I get home, hubby then pops in from training before going off to deliver a course and I'm having a kitten convinced I'm going to be carted off to hospital to be restitched I thought he laughed but I can't swear to it, he did hug me. Made me a cuppa and the phone rang, it's the oncology department they are cancelling my appointment for Tuesday as clinic won't be on, hubby has cancelled a days work to come with me the money is not recoverable, now he has had to cancel for the following week which is more lost money. Can't face it on my own, there will be four consultants the nurse from the chemo suite and the oncolgy nurse, if the bloods are okay may even start chemo that day, which wil do me a favour time wise, as now I've decided to go for it (possibly without taxol) I want to get it done, a bit like going to the dentist.
I hope all six won't be peering at my internal stitches, one raised eyebrow and I'll probably faint.
The upside, I drove to the surgery, bit surprised at the stomach muscles complaining but oh so nice, although I did still feel a little light headed, and it was freezing cold, so I shaved my legs for nothing, I was wrapped up like a polar bear.
Of course the possitivity for chemo had to come from somewhere I can almost quote every chemo drug and which ones are used together, because of my anti-Taxol stance, I read a report from October this year that gave the different combi options, but it did say that carboplatin/taxol is still considered the best even though they have been using it for more than 15 years. Taxol does have long term side effects, but more worrying stage 1 OC clear cell should be treated as if it was OC advanced because it's difficult to treat which is why they do full surgery and then full hit chemo, so will in the end be guided once I have discussed my worries, I do wish that they had told me this little gem rather than let me find out. I appreciate that my oncologist didn't want a menopausal wreck out cold at his feet but ti might have helped with my dilema. Now this delay has me worrying about Gremlins, what if this delay gives them the chance to creep in to the bits they can't do anything about.
So tonight it's a very large glass of wine, and I shall start the anti-b's tomorrow. Cheers all
LA xx
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Lily-Anne
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So sorry you're still having a rough time and that your appointment next week was cancelled. Keep an open mind re the Taxol. Individuals respond in different ways and I'm lucky in that I don't seem to have suffered any long term effects. (Curly hair apart.) Its a shame that your husband loses two day's money but good that he's going with you to the appointment. I hope things start to improve soon.
I've read and reread your blog and just wondered whether you've been resting enough. There are a lot of internal stitches to mend which apparently take longer than the ones you can see so that's why we have do lift absolutely nothing and be waiting on for 6 weeks whilst the bits we can't see heal.
I just ask this because you've been so unlucky to have so many infections. Please don't forget to eat some bio-yoghurt as this will help to restore the good bacteria into your gut after so much anti-biotic, and I'm sure the combination of all the worry you have about chemotherapy, the op, and the 3 courses of anti-biotic are enough to drag anyone down.
I hope that you can take advantage of the extra day's leave your husband has and perhaps go out somewhere nice together and treat yourselves.
I don't suppose a delay in starting chemotherapy will have any adverse effect whatsoever - more what you're coming to terms with that the lack of Taxol may well have an impact on how effective the treatment is. They probably did mention the combination of Taxol and Carbo-Platin being the gold standard treatment for all Ovarian Cancer as it's in the literature the hospitals hand out but I'm sure you're head was so full of worried that you just missed that bit. Some ladies, unfortunately, can't have the two treatments because they're not well enough. They'd probably envy you having that choice.
I was told to avoid yoghurt with live bacteria while on chemo itself -- they said to treat myself as if I was preggers (ironic) and avoid live yoghurt ESP those little one-a-day jobs, soft cheeses like Brie fresh mayonnaise/uncooked egg stuff, alcohol and too much coffee!
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The no booze rule has clearly been totally ignored by the ladies here and done nobody any harm! Me I can't possibly give up coffee!
On the no booze rule,I was told a little of what you fancy does you good! (Mind you, that was the hospital dietitian at our support group,not the oncologist) The only reason I'm avoiding the booze is because my anti sickness tablets say avoid alcohol....as chemo 6 is due on the 13th December, I'm hoping for a glass at Christmas!
It's all a bit worrying to hear all the different advice people get.
I have to say nobody told me to avoid anything - so I just continued as usual - though thinking about it I did have a friend who was poorly on natural yoghurt. It is a bit ironic isn't it telling us to eat as though we are pregnant. I guess it depends on the individual and how strong they feel. Have to say when I was pregnant we were encouraged to eat anything we wanted to - but that was 30 odd years ago If anything they seemed to encourage me to eat things that were bad for me such as ice cream and doughnuts - which I don't like anyway.
It just shows how different treatment and advice is across the UK. I went to an event run by Ovacome yesterday to launch a report into the different practices in the various parts of England. They'd invited MPs along to meet us and talk about how we'd found our local services.
I'll withdraw the advice about yoghurt - but someone you do need to put some bacteria back into the system - not sure how you can achieve that. I know for one that anti-biotic makes me feel thoroughly ill so I'm always keen to get the gut back in working order. Perhaps the hospital will advise?
Yes the advice does seem way different -- all we can do is fight for education at GP level but also maybe nursing level? Mine was part of my briefing at first-day visit to chemo suite.
Annie ... I always thought that live yogurt was good for ones internal flora .... But guess it always wise to check first .... more so if your bloods are low ..re the yogurt ....
The silly thing is Annie, when I was in hospital with pneumonia during my last chemo I was actually given one of these little drinks every day - Actimel! I was never told not to have them and try to drink one every day. We are obviously all given different advice, but I think a lot of the time you have to use your common sense.
Have to agree with Annie on this one Lily- Anne as have often wondered if you have been trying to do to much too soon .....
We cannot see the internal repairs that take place after this op ..so I guess you tend to think its ok in there ..but start lifting or hovering or driving and your body tells you different ........ Its hard I know as you so want to be doing more but some times by doing more it means you end up doing less in the long run as you have upset things ...
Heres to the next glass ..when you have finished your pills xxxx
Take CARE ....
Love Jan xxxx
I agree. I had same pinky drips and stuff and went direct to source -- the surgeon. Said it was really common, due to the trauma to cervix mainly, could even get a bit more bloody. and only something to worry about if it went on for a long time -- but could be a couple of weeks. He was right. He also said can be exacerbated by doing too much -- REST MORE Lily-Anne!
Then everything has chance to work optimally -- overall healing, the antibiotics and your poor bruised little psyche. Not to be ignored, it's usually the bit that needs the most TLC. Venting is good. So keep on ranting, old girl.
Don't be surprised your finding new info all the time BTW, it seems to be a voyage if discovery all the was. Keep that mind open.
Moan away! I had infections like you after surgery! Best thing I did was go to A&E & got IV atibiotics and a week in a room to myself in hospital! They cleared up the infection though, 2 years and another op later I still get a slight pinky brown discharge which does not seem to be a problem!
Next time you see that GP suggest she reads your notes! LOL!
I had a call this afternoon from the oncology nurse, the consultant would like to see me tomorrow so that he can have a look, as I've had so many problems post op. Also a local lady who has had chemo and had the same stage and grade cancer as me has given her number and they have passed it on to me so I can have a chat with her to help with my chemo decision. Bit nervous going to hospital without hubby, especially as I've only been driving for a day and the hospital is quite some distance.
It's good that they are taking your concerns seriously. Sounds a bit harsh, I know, but you will just have to grit your teeth about the drive... It's best to get advice as soon as you can. All the best. I'm sure you'll be fine and it's better to get it sorted out. I'm glad you'll have someone to talk to locally as well. It makes a big difference.
Its good to moan. I had clear cell (1c) in one of my tumours and my oncologist was adamant about the taxol to give me the best chance (I didn't want it either)- said he would advise his sister the same in my position. Talk about persuasion!!
Its better once you start- in fact one of my best Christmas's was high on the drugs they gave me for the joint pain after chemo- it made me very very happy! Once you've started you just go with the flow- no choice really and the only goal is to get to no 6. Good luck,
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