Hi all sorry I haven't been on of late I have been feeling quite poorly of late. My Rheumatoid arthritis had returned and has left me with painful joints and very tired also my tummy has swollen so I look 9 months pregnant and have been in a lot of discomfort with this having sickness and violent headaches and reflux . My macmillian nurse has been fantastic lifting my spirits and giving me lots of information and tips. My surgery is now booked for 25th Septemeber and whilst I am still nervous and frightened a part of me cant wait as I am feeling quite poorly at the moment and very uncomfortable and be glad to get this tumour out . I have resorted to leggings and baggy tops as non of my former wardrobe fits. I'm finding after walking short distances has become uncomfortable and leaves me in pain. So i'm not feeling good at all. My surgeon apparently is quite famous having appeared on Embarrassing bodies and The Hospital documentary and slos works in all the private bupa hospitals in Birmingham. Apparently one of the top gyney surgeons and I am lucky to have her so im told . Have had to wait due to her not being available till my date due to high demand and her being on hols for 2 weeks, but my consultant for my Rhuemy who found the tumour wanted the best possible care for me ( he must like me ? lol ). I get to meet her on the 19th September when I have my premed and she will answer all my questions on the surgery and any worries I have ( I have a list lol might take a while ) . I wont know if it is cancer until 14 days after surgery and at what stage if it is. I think the not knowing and waiting is awful at least if I have a diagnosis I can accept what it is and get on with the fight whatever that will be. Well enough of my moaning. I hope you are all doing well and recovering in the best possible way. big soft hugs to you all . xxxxxxx :))
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wishing you all the best and wilbe thinkgin of you when you have your op,i have ha dprobs fro 2 years +,same swollen stomach looking several montsh pregnant .also get head pain and heartburn acid reflux.is your stomach hard?mine is and my dr keeps saying it s bloating -and IBS but in 2 years has never given me any advice on how to treat it etc.i canonly wear loose clothing now as my trousers and jeans dont fit over my stomach.i still believe it is something more -a cyst or tumour -even tho scans don't show tehm,-just because it is the only reason i have gained about 2 stones in weight in the last 2 years and have lost weight elsewhere in about july.have symtpoms of lupus and thyroid probs which he is dismissing cos he says bloods are normal.
hi Anburma, Thank you for your kind words of support and good wishes. Im so sorry to hear you are having a bad time at the moment I was diagnosed with IBS some 10 years ago and was given medication for this the symptoms are very similar to OC. I never realised until they found a tumour in my pelvic region only found by chance due to an MRI scan I had to see if my Rheumatoid arthritis had spread to my back . I m not saying this is the case for you but I would be persistent with your GP if symptoms do not calm down . It could well be IBS but he should be giving you information on how to cope and meds to counteract the effects ie bloating. Unfortunately for me the symptoms of my IBS made me not question if there was anything else wrong and I just dismissed it as IBS . Now I have got to have surgery to remove the tumour which is the size of a small caser football and they still say they don't think its cancer but cant tell me if it is cancer until biopsy of the tumour and other parts removed in surgery is performed hence why I questioned how can they say its unlikely to be cancer. So I have to wait the 14 days after surgery to find out the results I hope the results are in my favour. If I was you I would go back to GP explain again your symptoms and ask for info on IBS and meds to help and persist if all else fails get a second opinion but don't leave it. Sometimes persistence in these matters is what it takes . Wish you luck and hope you get it sorted out. hugs lena :)) xx
hi I ddi actualy have IBS many years ago and don't have the same symtpoms now-no diarrheoa or constipation to speak of.-he did say to me on the 11th he would let me have my blood results if I no longer looked on the internet.bribery?i wouldnt have had to if he gave me help in the first place .he s given me meds btu I think they are all pain relief for abdo pain,i have asked him on few occasions to do something about it.will go back as soon as I get the copies of my blood tests.i still say my dog is concerned as she Is behaving out of character its not like her to lay around looking sad.and cos the pain has spread to my pelvis am concerned now.
Good luck with the surgery. You do seem to have a tip-top team and you can't ask for more. I really hope this brings about a relief to all the awful symptoms you've been suffering. Not long now. Make sure you have your recovery time planned so you do absolutlely no lifting at all for 6 weeks and gently increase your walking as this is good post-op exercise.
Ahhh thank you Annie I just read your blogg been getting up to date with the bloggs how awful I think its disgusting of the NHS everyone should have the same options open to them regardless of address. Glad you are now in good hands hope all goes well for you Annie fingers crossed . I too hope I get some relief still terrified of the surgery but that is becoming more distant as I become more uncomfortable and in pain be glad when its over then will need to concentrate on recovery and brace myself for the results. My husband has everything planned im under strict orders lol . I have my knitting currently knitting my grandsons two Aran jumpers for the winter, my books and Downton Abbey is back so a lot to entertain me . soft hugs and loads of love to you Annie xxxx lena :))
Thanks for your reply Lena and your concerns over the situation I found myself in. What is ridiculous is that we still call it a 'National Health Service'. It isn't a National Health Service at all but a collection of disparate Health Services offering treatment of differing quality and scope. The sooner we rename this motley collection of facilities and raise awareness of the problems the sooner we can start to tackle the inequality across the UK.
I read somewhere that about 25% of ovarian cancer cases are not totally resectable so some residual disease will be left in those patients. In the best centres the maximum - i.e. 75% of patients have all visible tumours removed through surgery. This falls to 10% in the poorer centres with less skills and resources. If I were going for surgery with the knowledge I have 2 1/2 years after diagnosis I would be asking the surgeon in my hospital what percentage of their ovarian cancer patients emerge from surgery with no visible evidence of disease. Whilst much can be done following surgery with other therapies it is those who have NED after first surgery who stand the greatest chance. Armed with that knowledge I'd be looking for the hospital with a 75% success rate.
You will feel so much better once you've had surgery and know you're on the way to recovery.
I should add that although the Christie is deemed a centre of excellence, it is still only a chemo treatment centre. Their surgical skills are limited and in fact they have only started undertaking surgical procedures about 12 mths ago. Prior to this you would be sent to a neaarby hospital. In Sandra,s case she chose her local hospital at North Staffs. Her surgeon had a reputaion for being the best at the hospital and he did remove all the disease including resecting the bowel. We were NED but within 3 mths were looking at a recurrence and progression to the spleen. It shows even with the best surgical procedure the outcome is still uncertain. Xx
A good point Paul. There is no knowing how this disease will go and it's unfair but at least with a NED after surgery Sandra had the best chance possible.
That's very true. It is impossible at the moment anywhere to be absolutely certain all traces of disease are removed after surgery. The time limits placed on surgeons by managers & Cameron and other morons are utterly ridiculous. The NHS is literally vomiting staff. No wonder - who else would work under conditions organised by non clinicians??? You would be paid more in e.g. Bangladesh!!!
Hi Lena
It is a very stressful time waiting for surgery and results .
I am pleased you have got an excellent surgeon as that is very important in my opinion.
I am so sorry that you are having such a rough time. This is the very very worst time of all, dreading the surgery but wanting it to happen.
It is so good that you have a well known surgeon. I made the mistake of choosing to stay in our local hospital ,despite being given the choice to go elsewhere. You are a wise lady to have waited.
As you say you won't know what it is till you are operated on....however many big big tumours I have heard about turn out to borderline , so no chemo is needed. Fingers crossed this maybe what you have.
Having g a loving home life is so important , my hubby and I had an adorable little Cavalier , Charlie , who never left my side while I was ill.....they are adorable dogs .
All the very best, wishing and hoping you have great results. A good, experienced surgeon is so important. The waiting is horrible but you're getting nearer and nearer to getting rid of all that stuff that is making you so uncomfortable. Will be thinking of you. Hugs and posivibes (((xxx)))
Love Wendy xx
Just sending you my best wishes for a good outcome love x G x
You have all my sympathy. I do remember this time two years ago when I was at the baggy clothes stage and looked at least 7 months pregnant. It was such a relief to get back to my normal shape.
Wishing you all the best with your surgery. Make sure that you don't try to do too much too quickly afterwards. It's important to give your body time to heal. Waiting for the results is never easy but not too long to go now.
I'm sorry you are so apprehensive about the surgery, but am sure it is going to make you SO much more comfortable. Te reflux and things should abate immediately (it does rather sound like you have lots of ascites too, so not sure why you were just left to suffer with that... It is one of the main symptoms of OC but not only of that, so doesn't shed light per se - but it is dealable with with a drain).
I was apprehensive too, but it is amazing how once you get checked in it all just barrels along and somehow you are awake afterwards and wondering what has happened!
I am not sure whether a doc who has been on Embarrassing bodies is a good thing or not. But if it were me I think I would just be glad I wouldn't possibly surprise him...!
We will be thinking of you. Pay attention to Annie's post above about planning for doing NOTHNG afterwards!
thank you all for your good luck and well wishes. I'm currently sitting on my laptop looking through the blogs as I cant sleep due to pain and being so uncomfortable your kind support and messages are very much appreciated I send all my love to you all and wish you all good health I will keep you posted on how im getting on. Thank you once again . soft hugs lena xxxx :))
Hi there .. You seem to have a good relationship with your doctors which is very good. I've never been close to that to my knowledge. I get dealt with by a multidisciplinary team whose members swop and change like the wind. I wish you all of the good thoughts that I have and more. And, yes, listen to Auntie Annie above (sorry Annie, I take liberties I know) and put your feet up post op with the occasional stroll to the loo and fruit bowl! X x
Very good luck with the surgery, and hope the rheumatoid pain settles too. Who's this wonderful surgeon ? I'm in stoke and may need surgery in the future ??
Do hope you managed to get some sleep last night, and as Sue says, just go with the flow in hospital , and before you know it he surgeries done - say yes to any post op painkillers they offer you - they just help you sleep and get back on your feet again.
Hi Hilary. I so understand your concerns. Prior to my debunking I had over 4 litres of fluid in my abdomen and also looked 9 months pregnant and wire leggings and loose tops. I had long surgery last November. I woke in ICU with morphine Sri that I could control and not overdose when the pain was bad. The nurses got me out of bed the very next day which I believe helped my recovery. After 2 days I took short walks which grew longer each time. After 6 days I was home. My scar is looking good. I bathed it in salt water and my GP gave me fuciden cream. Unfortunately mine was 3C cancer and I had my ovaries and bowel removed leaving me with a colostomy. I do hope yours is not cancerous and you go in to make a full and speedy recovery. My cancer has returned and I get my results this Thursday. I will post to let all my friends on this site what's next. Take care. Izzystep xx
That mite have been me 7 yrs ago. My surgeon must have thawt i was batty. When he told me about debaulk isaid did that mean id have to cancel my hols!! Told me i was going to be very busy for following nine months. Mine was stage three phase three clear cell and i was scared until i read story of lady on ovacom site who had exactly same n was 9 years down the line.
My onc kept tellin me to stay optomistic n as we had similar sense of humour at end of chemo he said he' d try to think of diff word as i was gettin fed up of the word, lol. I know its difficult but i tried to see funny side of things n my daft sense of humour got me thru. Lots of love. Wendy
Thank you Jenny. Ref draining I don't know that has never been mentioned to me ,all I can think is when I saw my oncologist my tummy was not this bad and he seems to think its a cyst but I am doubtful on this. Would a cyst cause so much pain, and discomfort and bloating and the other symptoms? I haven't seen anyone since I saw the oncologist but will be going to my pre-med on Thursday and meeting the surgeon so will see what she says, I have so many questions to ask but you have just given me another valid question to ask so thank you for that jenny. I'll let you all know how I get on .xxx lena
Normally ovarian cancer not cause pain unless pressing on a nerve, hence unlikely that you have it so dont stress out and that's why its called the silent killer.Wishing you well love Jenny xxx
no matter how hard the road we travel seems,the fact is you are still here,still fighting,still wanting to get better,not much help in logistic terms but whats that saying "where theres hope !"
I am sorry to be reading all this - what a struggle you have had. But I hope all goes well during surgery, and after that you will be much, much better than you are now. Best wishes, Vicky
Good luck with the surgery. Sounds like you are in very good hands so that must help with getting yourself prepared for the big day. It will be a relief for you to get some answers and I really hope they are all good ones.
Thank you all for your kind responses of well wishes and support . I am at present wishing it would hurry up now have now moved onto a tens machine due to severe pain in my back and abdomen back being the worst , pain killers don't seem to be doing anything, but to my relief it is working . Hope you are all doing well and pain free. hugs to everyone .xxxxxx lena
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