I've had a tiring day after travelling from my home to London where I am being sent for my surgery as Southend do not have the specialist needed. I got there early but then my appointment ran two hours late. I wasn't expecting my information to be sugar coated but I got told a whole range of things from you could end up disease free but I could open you up and do nothing and I might have to remove a section of the bowel which may result in a permanent stoma. That is the short version. I'm trying desperately hard to stay positive. I know PPC can return but up till now I thought the op would be less complicated.
On top of that my oncologist wrote to them as the op date they gave meant a 7 week gap from my last carbo and 5 weeks from my last taxol. They were adamant it could not be moved and would be 20th June. So with my oncologists consent I booked a holiday. Today........... third new op date - smack bang in the middle of my holiday as all now in agreement the 20th is too late. I'm hoping I can try and change the holiday.
Sorry for the rant and I am shattered but I feel sad again.
Tracey x
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I am sorry you have had such a rough day. I would be totally bummed out about my holiday but there will be other brilliant holidays in the future.
They gave me the whole worse case scenario routine pre op. I suppose it is necessary if you are going to give full informed consent but it is not really what you want to hear when you are trying to cope with everything that is going on. Remember you do not have to stay positive all the time. A little melt down is allowed and perfectly natural.
Fatigue is the worst thing for making you feel low and emotional. Have a good nights sleep and you will feel stronger in the morning.
Hi Tracey, sounds familiar discussing surgery outcomes. The surgeons really don't know for certain exactly what they will need to do until they see what's going on inside. The scans give a good picture of what is going on, but the final decisions are made on the spot. It is important that you are aware of all the options so that you know what you may have to deal with when you come round from the op. I was also a candidate for a stoma, but they managed to remove the tumour without compromising the bowel. My surgeon was fairly frank with me and he said that managing expectations was a major part of his job.
Travelling to London is quite a trek, but you will have access to the appropriate teams and care required. The surgery is complex, but it is amazing how quickly the body heals. There are plenty good posts on here about dealing with recovery and the aftermath of surgery. Once you get through this, you will feel that you are capable of anything. I am 7 months from surgery and my scar is fading, I am proud of it. Sad, but true.☺.
I made up a play list of relaxing and upbeat music on Spotify to take into hospital. Great for just chilling and helping to while away the time. Mind you the time flew by with all the monitoring, meals and hospital routines. Your recovery really starts once you get home, just make sure you accept any help offered.
What a pain about the holiday dates. I hope you can reschedule it. Hopefully we will get a decent summer and you can enjoy gentle days in the garden and going for walks as you start to pick up.
Thank you Loraine. I've got great family and friends ready to help. My sister recently was in a position to give up work and to care for me was part of her decision. Xx
Shared a bedroom as kids and argued like mad. Her side of the room was a mess with rock posters. Mine was immaculate with David essex posters. Lol. So different but she is my best mate nowx
Are you going to take your holiday? There is an amount of flexibility Id speak to Macmillan before cancelling. I took my holiday last September and it's just as well I did. Even though out of pocket for Aprils one as wasn't well enough to fly.
I'd ask for the pros and cons then sit down and write your own. Comparison can help
I feel that i should have the op sooner too. Just annoying i checked the date and told no way sooner. I think because i am on a trial too the protocol is not to have such a big gap after chemo. They already stopped chemo once for the first cancelled date. The two hospitals are not talking to each other. I shall have the pleasure of EasyJet customer services tomorrow. Not sure i wont cry if they are numpties. Fingers crossed. I only want a voucher to rebook. I dont want my movey back. A stress i could do without. Xx
I contacted Easyjet last week to cancel my holiday, I explained my diagnosis and treatment, customer services said get a letter from your hospital stating you are not able to fly and they will refund the full amount, she also explained how to scan the letter to their web page to speed up the process.
Thank you. Your advice worked. Im collecting a letter from the hospital tomorrow and at the very least have secured a voucher for the full amount. Spoke to a very weird man though who kept on about all mothers being his mother and terminal illness makes him want to cry. I think he was being kind.
What a bummer! You had a very frustrating day yesterday and I can only hope that things get sorted and go more smoothly for you, the added stress is JUST NOT NEEDED is it?
They always have to tell you the worst case scenario, I remember my husband and I sitting listening to my Onc Gynae Surgeon Consultant running through the list of what 'could' happen and what he 'might' have to do and thinking 'I haven't got a choice so just give me that paper to sign'! Mind you it didn't really seem real'!
It's a shame that your two hospitals don't seem to be communicating, have you told them what added stress this is causing!
I suppose because my experience of working with two hospitals has been positive I thought they were all like this. My initial investigations were started at one hospital before I was transferred to another 60 minutes away for cancer surgery and now I'm being treated back at the original for chemo - mind you they run a joint Multi Disciplinary Team and my Chemo Onc is based at the second hospital and travels here on a weekly basis.
I hope you can sort your holiday out with as little stress as possible.
I asked my Dr last week what surgery I will have she was very vague with her answers and said it depends on the CT scan I will have, but also it really does depend on what she sees during surgery.
Hopefully you feel a little better today and got some sleep, I read an article yesterday about PPC sufferers not having an identity with this decease as it is rare and can sometimes have quite an emotional impact on us, also although they treat it the same as ovarian the surgery can sometimes have differences. The best thing I read was that this forum is so supportive and help is always there for you.
Before I replied to Tracey I read all the other replies including yours. I was interested in the article you talked about as I would love to read it. I have felt isolated for the past 5 years with this rare illness. I know that OC is terrifying enough but when you are confronted with PPC you may as well be on Mars . Thank God for this site as we can find other women like us and lovely OC women look out for us too. Tomorrow I meet my Cancer psychologist as I have been going through a rough time emotionally and she is so understanding . I just need that extra boost to keep going. I hope that you will get good results and that it will all go well for you after that
Thanks again. I didn't quite make the 5 years as I was a few weeks short when I was told it was possibly in my lymph nodes which are swollen. I will have a scan in July to see if they have got larger and proceed from there. I have been told I am lucky to have a long disease free period as it will mean that hopefully I should respond well again to the same chemo. Recurrence brings a new set of emotions which was why I met the psychologist . I also had some issues with one of the team that caused upset. However I am optimistic and if and when I am told I need more treatment I will just say " bring it on ! " . So we will both keep smiling. Take care and if you find that article that would be great . Let me know how you are getting on.
I remember the previous surgery talk very well and remember feeling so scared at the thought of having a stoma on top of everything else. My gyne surgeon said that before she worked there they didn't have the stoma nurse visit you before surgery and the shock of some patients waking up well you can imagine. When I woke up I was too scared to feel or ask and I was just laying there silently freaking out. As it happens I didn't need a stoma this time.
I also have experience of poor administration at hospitals and find the best way is to preempt any problems and get on the phone.
It's a big old faff we have to do as well as try to get our heads round this disease. Best of luck with your surgery and your easyJet dealings!
Hi, I am 4 weeks post surgery and was asked to sign a consent form for a colostomy and a bowel re section, and, like you, was completely knocked sideways, as I wasn't prepared at all.
The surgeon explained that he needed the consent form signed before the op, "just in case" he found the worse scenario as he wouldn't want to put me through a further op. later.
In the event I didn't need either of these procedures and hopefully, neither will you, but I just told myself that if I did, at least the surgeon was doing a belt and braces job.
We all need to rant from time to time, even more so with our diagnosis. The long journey; then the delay in being seen doubtless exacerbated your mood. I too travel a long way for treatment, but it is my decision to do so and so I take delays, cancelled trains in my stride. It can be less easy if we feel something has been forced upon us as it can make us feel powerless.
As others have said, the range of scenarios given to you regarding possible outcomes is usual but I hope the information was given to you in an empathic manner.
As for the holiday, it must be so frustrating, especially after you'd taken the trouble to check the date. I do hope you can rearrange at no extra cost. Airline and holiday company staff do have some flexibility in genuine cases.
With regard to a surgeon and his talk about surgery, they have to go through all this with you, if they don't inform you beforehand and you wake up with a stomna, or something they didn't say, they can be sued, that's why they tell you the worse case scenario. We have all been there. I don't have a stoma.
When I worked as a Medical secretary I remember typing up sticky labels for the surgeon with all the things he had to tell the patient at consent for a hip rep!acement, knee rep!acement, arthroscopy etc. I would print him off about 5 pages of labels for each and when he was going to put someone on his waiting list out would come the relevant label, which he would go through with them and then stick it onto the consent form. It may seem matter of fact to them but the patient can be scared stiff by all this info.
Did you ask him for letter to support you have your holiday postponed? If you have any problems, contact him and he should provide this for you. I often had to type up such letters too.
You have a rant, we are here for you! Can you get a letter from your onc to say you can't travel and then you can get your full refund and plan for the future, that always helps to have something to look forward to.
We all have good and bad days,but look to the future and a holiday to look forward to is a good start, I have just been toDubrovnik and in 2 weeks go to Turkey, I very much bury my head in the sand when I am able and when you get the chance you will be able to yourself, so Definately plan for the future,
I just want to wish you well and I hope it is all sorted out for you in the best possible way for your situation . I am of no help with advice on operation as I seem to be one of the few PPC people who never had an op. I am not sure why not but no point in looking back. I will be following your progress and willing you on in spirit .
Hi Tracey. It's super scary when you receive that risk and complications spiel before the surgery. As if you're not worried enough at that time. And it gets even scarier when the stoma nurse starts painting the potential spots onto your stomach.
But Grannylo said it well.. it's about giving your medical team free reins and trusting them to do the very best they can to a) remove the tumour and b) retain the best quality of life for you afterwards i.e. they will only create a stoma if absolutely necessary. They just don't know what to expect until they actually open us up.
During the pre-op talk I was contemplating restricting my surgeons and telling them I wouldn't accept a stoma no matter what. Eventually I came around and signed the form and allowed them to do whatever was necessary. In the end, some of my tumours were scraped from my bowels/rectum as well (and various other places) but no stoma was required at that time. Even if one is unavoidable, in many cases they are reversible. So don't worry about it quite yet.
The good thing is that your medical team sent you to London. The journey is very much worth it because the quality of this first big operation can be the single most important treatment success factor... and having an experienced gynecological oncologist perform it in a big hospital where this is a sad but common occurrence gives you the best chance at an optimal outcome.. rather than for a small local hospital attempting this op.
Go with the flow for now, trust your team, and keep asking for clarification, pain meds etc whenever you need it. We're thinking of you when the surgery time comes.
Hope you get your money back for the flights. Look forward to another holiday some time after your op.
Super helpful thankyou. Especially the marking on the tummy for a stoma. Had you not told me that i would have lost the plot when they did it. Tracey x
Hi Tracey, I just can't believe the messing about they are doing with your surgery appointment. When is the new date??
I hope you have managed to move your holiday without too much fuss or cost.
With your pre op talk too, they have to go through everything worse case scenario so it does panick you. Try not to worry.
I ended up with my large bowel removed which I was petrified about but to be honest when the surgeon said he had got rid of all the cancer he could see I was so grateful. If he had left my bowel I would still have the disease in me and i didn't want that. So I guess I am happy he did what he did.
Regards the stoma I seem to be coping quite well so far. It's not as bad as I thought it was going to be.
Thank you Mandy. I will be the same too. A small price to pay living. I think i had information overload and was thinking what else is going to be thrown at me. Im actually on the best high ive had so far. The ladies here and their responses are totally the reason for this. Im petrified but almost excited that its going to be done and I'm nearly at the last hurdle. You have done amazingly well and so brave. I hope you are feeling better. I expect your chemo will be over the same same as mine.....i only have two cycles after op. Hopefully we will have a treatment free August. We can both write off 2016 so far. New date is 6th june. There is no parking at the royal london at all but my brother is a leading london fire officer so he is going to get me and abuse his right to park any where and im going home in style. Do think think he could put the blue light on and get me home more quickly? haha. Hugs to you too Mandy. I hope you are being spoilt in your recovery. Tracey xx
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Wound opened!
CT scan... the date!
debulking op
