Opp update : Hi Folks as you know I went to see... - LUPUS UK

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Opp update

svfarmer profile image

Hi Folks as you know I went to see anaesthetist yesterday regarding my upcoming hysterectomy , he checked my neck and lungs to make sure they were ok and asked if I had any questions - so I said “ yes are you doing the operation with epidural or general” he replied that no we have to do your up with general as your ovaries are huge and we don’t know until we open you up as to what we find so I said “ I’ve been told verbally that my biopsy results were normal so he said one of the masses that you have may be cancer, we don’t know yet , I then asked have you got my CT scan results, so he got them up on screen for me - he said if it’s cancer it hasn’t spread but we’ve also found you have a large bowel aneurysm so we’ve referred you to another hospital as you need surgery on that - I came home feeling very deflated , my fiancé rang the hospital this morning to see what the hell is going on - consultant then rang to say that my ovaries are huge and one of the masses is intertwined with the ovary and he dosnt know if it’s cancer yet but said he has to get everything out intact in case it’s cancer and could spread so I will have a very large vertical scar from above my belly button down - he is doing the operation on Monday on me then when I’m recovered I will have to have more surgery to deal with aneurysm - the thing is because of my lupus I don’t heal well so am worried - sorry for long post everyone and thankyou for all your support ❤️

90 Replies

that must have come as a shock. not one op but two and possible cancer to boot. wish you all the best and a speedy recovery xx

svfarmer profile image
svfarmer in reply to suzannah16

Yes it was a big shock , Thankyou so much for your best wishes xx

I am so very sorry that it was not all good news. You should not have had to find out that way from an anaesthetist. The positives are that there is no spread if it is cancer and that you will not have long to wait for it. I know you must be so anxious and understandably so but I hope that you can have faith in the surgeon that he will do the very best for you. I don’t heal well. My hysterectomy was under general anaesthetic but my scar is from hip bone to hip bone and I had real issues with bursting my stitches so I think the way they are doing yours will be less likely to do that. I wish there was something that I could say or do to comfort you. You are so strong and positive and it will get you through this, along with all of us here cheering you on. The second operation hopefully will not be as major. Maybe they can do it by keyhole surgery under a spinal for you. Good luck for Monday . Big Cwtches and lots of love xxx

Thanks Cecily - big hugs back 🤗❤️

What a blow, sv. That is a lot to take in. It sounds like the doctor knows what to do and it is a good thing they were on top of this.

How much medication are you on? These are the situations when the specialists earn their salary. They will all be alert to issues with your lupus and on high alert.

Thinking of you.

😘Kay

svfarmer profile image
svfarmer in reply to KayHimm

Thanks Kay I’m not on any steroids but am on methotrexate - am thinking of you too - lots of love xx

Dear SV, what a bombshell, i can't begin to imagine how you are feeling, it's good you are having the op so quickly. You have the love and support of everyone on here and we are all rooting for you. Mira and Bea will comfort you too, take care and all the best for monday xx.

svfarmer profile image
svfarmer in reply to Londongigi

Thankyou so much xx

Oh SV, that must have come as a huge shock. And a particularly awful way to find out the news. You must be knocked sideways - but you will recover your positivity - you're a fighter.

On a positive note, at least you don't have too long to wait for the operation. In my experience, anaesthetists are very experienced in treating patients in a holistic way these days and they will have a wealth of experience in dealing with complex people such as you 🌈

Unfortunately, they are not very good communicators, as their patients are usually asleep 🛏️🛏️🛏️!!!

Our thoughts and very, very best wishes are with you for Monday. And just think of all the fur baby cuddles waiting when you get home (not to mention those of your fiancé).

Many hugs coming your way, 🤗🤗🤗😘😘😘

svfarmer profile image
svfarmer in reply to MEGS53

Thanks Meg he was extremely nice but yes I was very shocked , am getting my head round it today and will be back to my positive self tomorrow xxx

MEGS53 profile image
MEGS53 in reply to svfarmer

I'm sure you will - you're a star 🌟🌟🌟🌟🌟. I always said this to my daughter when she was being exceptionally brave - old habits......

Please keep us updated, remember we're always here for you, xxx

svfarmer profile image
svfarmer in reply to MEGS53

🙏💕

That is one hell of a blow when you’d been led to believe it wasn’t cancer. The only upside is you’ll have less time to worry about it. When I went to have half my thyroid removed due to a large cyst they only told me the night before , when admitted, that they couldn’t rule out cancer. I was terrified but only for the 1 night. It wasn’t, as luck would have it. So try to keep positive SV because if they can get the mass out intact it will be academic whether it is cancer or not. 🙏🏻 Shocking news at the last minute, but keep the faith! Thinking of you and keeping you in my prayers. 🤗😘🙏🏻xxx

svfarmer profile image
svfarmer in reply to Spotty-ewe

Thanks Spotty I’m getting used to the idea today and will be back to my positive self tomorrow, I was just so shocked yesterday but thankfully not too long to wait x

svfarmer profile image
svfarmer in reply to Spotty-ewe

Thanks Spotty I’m getting used to the idea today and will be back to my positive self tomorrow, I was just so shocked yesterday but thankfully not too long to wait x

Spotty-ewe profile image
Spotty-ewe in reply to svfarmer

You are doing REALLY well SV. That was definitely a massive shock but you are dealing with it so bravely. Being positive will help you and knowing all of us here are thinking of you and sending our love and very best wishes. Sending hugs. 🤗😘xx

svfarmer profile image
svfarmer in reply to Spotty-ewe

Thankyou so much Spotty - how did your Pip phone call go yesterday? Xx

Spotty-ewe profile image
Spotty-ewe in reply to svfarmer

It was this morning SV and quite challenging. I’ve told you about it on Still’s post. Thank you so much for thinking of me. 🤗😘x

svfarmer profile image
svfarmer in reply to Spotty-ewe

🥰

Very sorry to hear of your upsetting news, and it is understandable for you and your fiance to be so worried.

There is no good way of telling a patient that there may be bad news, some doctors are better than it than others, although yours was frank he must have realised the shock you were hearing.

To give you some perspective, I had a hysterectomy over 30 years ago, (hip to hip scar) but ovaries remained to avoid an early menopause.

10 years ago I had renal cancer and the ct scan also found huge masses on my ovaries.

Like you I was worried, it is almost too much to think about so I feel very much empathy with you.

However, after the renal cancer was treated, (I am still in remission) the problem ovaries were tackled and another major op endured. My 10cms (4inch) by 10cms wide and 4cms thick on the left ovary was a benign Brenner Tumour. The right was the same but slightly smaller. Both ovaries and tumours were removed although the left one is still rooted but not growing.

I do hope the same outcome will be for you.

Not every mass is a cancer and the fact that they are alert to another possible problem at this early stage is a positive thing.

I wish you the very best of luck and a good outcome. Having lupus means it will take a little longer to feel better but you will get there.

svfarmer profile image
svfarmer in reply to bluebell99

Gosh bluebell you certainly have been to hell and back and so pleased that you are in remission from your renal cancer - Thankyou so much for your kind wishes xx

Hi svfarmer I'm so sorry to read your post. It must have come as a shock to you. I wish you all the very best. Sending you lots of hugs🤗🤗🤗🤗 xxx

svfarmer profile image
svfarmer in reply to JCZW

Thankyou 🤗❤️

Sorry to hear of your shock and info from your appointment .OK try not to dwell and think positively. Your op is only days away and you will be rid of some and know what you are facing with the other.you are a strong cookie so you can face this head on and win .sending hugs 🤗and tummy tickles xxx

Thanks SML I will be ok tomorrow , the shock of it all has kind of settled in my brain now so I will be positive again by tomorrow xx

Hello svfarmer,

That was a huge explosion of information for you to digest!

If you had not raised a question, would you have known otherwise!

It will take a lot of processing to get your head around all that you have heard earlier today. Good to hear that your Fiancé is helping you through this.

You are in all of our thoughts and we are all sending you zillions of Good Luck Wishes 🍀

Thankyou so much for your best wishes xxx

Sending you love SV!!! I'm so sorry to hear this but I have to say the doctor sounds totally on top of it all which I hope is at least a bit reassuring. Sounds like they have thought through the best strategy for a worst case scenario and are working to make sure if it's the big c they get it all for you. I wish you fast healing and anxiety free days as you prepare. I've always found you to be such a wonderful and inspiring poster on this forum and get this total impression of strength from you so I'm hoping that translates offline too for you in these challenging days ahead and that you go in feeling capable and strong. You got this and I'm rooting for the best outcome and recovery for you. 😘😘😘😘

Thankyou so much insomniacette - your kind words have reminded me just how strong I am and I’m feeling very positive today so Thankyou so much 💕

💪💪😘😘

Hi svfarmer, so sorry at your news. That all must have been an awful shock and not nice hearing it from the anethetist rather than the surgeon. Im so sorry too your facing two ops. Life is just too cruel sometimes.

A little thing that might help is that im on mtx too and steroids and healed really well after my foot op. Also i was told i could stay on mtx as it was ok with a general anaethestic!. Admittedly my op was quicker than yours but it might just help you a bit.

Im sending lots of ❤ and positive healing hugs for monday and keep us posted as and when you can. I hope your recovery goes as well as it can. Big hug. Xx🤞❤🤞

svfarmer profile image
svfarmer in reply to misty14

Thanks so much Misty, yes it was a shock but am getting used to it now, Thankyou so much for your kind words xx

misty14 profile image
misty14 in reply to svfarmer

All the very best. Xx😊💕😊

Hi SV. Just want to join in here with prayersAnd hugs. I pray you will find a quiet space of peace before, during and after. I did not know yet after my spine surgeries that I had lupus; only that I obviously felt awful. I will tell you what helped me heal very quickly and with no hitches and that is bone broth

Or we call it chicken broth. If you are not

Familiar with how to make it just Google.

It’s so easy and nutritious and you will be able to keep it down. I drank 8 ounces

3x a day. You could make it with 2 good

Chickens this weekend and help keep yourself busy. It’s so awfully easy to make.

And perhaps this sounds funny but I

Pampered myself with some new jammies.

It’s the little things😊 Best wishes for

Speedy recovery, Titters

svfarmer profile image
svfarmer in reply to Titters

Thankyou so much Titters, yes I take bone broth also, I get it already made up it’s called “the best of the bone broth” I will take your advice and make sure I take it a few times a day 💕

Oh my goodness- what a lot to take on board! Sending you positive vibes & good wishes for the weeks ahead. You cope with lupus - you’ve got this! Thinking about you xxx

Thankyou so much xx

Thank you xxx

Oh my goodness what a lot for you to take in. I have had a hysterectomy, admittedly before my Lupus was diagnosed. It is a big op and you will need all your energy to get through it. So plan for lots of support. I also found having some positive things to look forward to helped. So for example, your favourite meals, l planned to get a new top and so after the op spent ages web surfing to find one l liked. Basically plan to keep your mind active with nice things. Keep asking questions, as it looks like that is going to be needed for you to find out what's happening. At least in the hospital you will have the support of the nurses. Take care and all the best for the surgery.

Thankyou yes that’s good advice - I can go clothes shopping from my sofa 😂🙏🙏

I echo the wealth of warmth and support sent from all the people here, everyone is thinking of you. You deserve a gold medal for bravery 🥇 big hug 🤗 hug 🤗

Thankyou xxx

Have you woken up feeling better about it this morning?

Sunflowers

Thank you for the gorgeous picture of your sunflowers, I’m feeling much better today Thankyou as slept solid xxx

Glad you like them, they’re such a positive flower having to grow so tall to reach the sun and produce seeds too, I hope you’re filled with positivity again today x 😉

It’s very sweet to think of me and yes very positive today xx

Goodness what a complete shock, is there anyone you can talk to and go through all of this with the process? A close friend perhaps who will listen to your worries and concerns? I guess the positive is that they know about it and are dealing with it all and it sounds like you have a good anaesatist who has communicated to you well where perhaps others haven’t.

For healing my own protocol is high doses of vitamin c, I have to take 1000mg after every meal when sick and for about two weeks and then reduce to 1000mg after two week I also have a green smoothie every day made of green leafy veg and a little bit of fruit. For inflammation I use turmeric about 1tsp in yoghurt (although cannot be used if on blood thinners!) These are things that are an add on really so not to replace any kind of medicine or pain relief that the drs will give you but they help my energy levels and cellular healing which in turn helps my body. Somethings we just need a bit extra! Xx

Thankyou yes that’s very good advice, I’m seeing a very close friend of mine today then self isolating from tomorrow xx

Best of luck from me too svfarmer it's such a rotten time for you ill look forward to hearing from you next week saying alls well.xx

svfarmer profile image
svfarmer in reply to

Thankyou xx

Huge 🤗🤗🤗from me SV 🤗🤗Am so sorry to hear your news 😔what a shock!!

It sounds like you're in good hands though and you've got a few days to prepare yourself for the first op. Treat yourself these next few days to get yourself prepped so you're as strong as u can be.

Am thinking of you 💜🌈😽😽xx

svfarmer profile image
svfarmer in reply to Krazykat26

👍🙏💕😘

So sorry to hear your news, sending you love and positive thoughts for your recovery, I'm sure your a strong lady, big big hugs, God bless ❤🌈 xx

svfarmer profile image
svfarmer in reply to rosebud52

🙏🤗💕😘

Thinking of you 🤗 And so sorry you were told all that info in such a blunt way. Sounds shocking.

Seems like you are in very good hands and that everything is being done in a cautionary way - doesn't means you have cancer, but they are rightly going to perform the surgery as cleanly as possible just in case.

You may take a bit longer to heal with the lupus, but you will get there. Your scar will be beautiful like all scars - a sign of survival, a part of you and a trace left by those who have acted to help us (even though they have the worse bedside manner in the world!!).

Positive vibes and healing hugs from all of us 🍀🌈

svfarmer profile image
svfarmer in reply to Hoofprints

Thankyou so much for your lovely words 💕

Oh my, a lot dropped on you and not what you had previously been told. Nothing is definite until they get in there so hopefully, it will not be cancer. Have you had any symptoms as far as the bowel aneurism? Everyone has given you good support and advice. You will continue to be in my thoughts. Talk to Mira and Bea. I know that they will listen and be there for you every step of the way.

Healing and hopeful hugs.

KayHimm profile image
KayHimm in reply to Pumpkin2009

Very true. Can’t know until they do the surgery.

svfarmer profile image
svfarmer in reply to KayHimm

🥰

svfarmer profile image
svfarmer in reply to Pumpkin2009

Thankyou Pumpkin, no I’ve had no symptoms at all regarding the bowel aneurysm - I went to meet a good friend of mine today and Ian sent me a picture of Mira waiting and looking for me on the drive, she can’t bare to be away from me even though she has her furry mummy with her all the time xx

Pumpkin2009 profile image
Pumpkin2009 in reply to svfarmer

I know what you mean. Our little fur babies just love us so much. You asked me in a previous post how Gigi and Pumpkin get along. They do know how to social distance when necessary. Gigi would love to play with Pumpkin, but she is so much bigger than Pumpkin, that Pumpkin, although very interested in what Gigi does, is a bit intimidated at times when Gig runs full force towards him. I was actually quite surprised when Pumpkin first me Gigi, that Pumpkin accepted her so quickly. I keep trying to explain to Gig that Pumpkin loves her, but she needs to give Pumpkin his space. Yes, i talk to my babies all the time. They have gotten me through so many rough times. I know that Mra and Bea will help you heal from the surgeries. Unconditional love is the best medicine in my opinion.

Healing and hopeful hugs.

svfarmer profile image
svfarmer in reply to Pumpkin2009

Thankyou - Mira has never seen a cat- we live in the country so have very few neighbours, I think she would be frightened to death - it’s lovely that your 2 get on ❤️

I am so sorry to read this. The surgeon is correct you want to avoid tumor seeding by keeping it intact in case it is malignant, which I am so hopeful it is not. Cross this surgery first worry about the next later.

As to healing this is very new age but hypnosis is showing improvement not only on pain management but also on accelerated healing. It might be worth trying some self healing meditation videos or asking for a professional hypnosis session.

You are in my thoughts and I hope all goes very well. You got this!

svfarmer profile image
svfarmer in reply to Roarah

Thankyou so much Roarah I will look in to this ❤️

Wow, it must have been a shock finding out like that but I suppose it has left you less time to worry and it'll be gone soon. Wishing you all the best.

svfarmer profile image
svfarmer in reply to Tykle

🙏💕🥰

So sorry to hear what you are going through.

Have you had a CA 125 blood test? This is normally the first port of call if ovarian cancer is suspected. If the CA 125 blood test is high it is not conclusive but can be more indicative of ovarian cancer. Your GP can order one if it has not been done.

In 2018 following an MRI to look at my spine, a large mass (7cm) was discovered on my ovary. My GP went pale when she saw the scan results but after a normal CA 125 test she calmed down and I felt more reassured.

I then had a transvaginal scan to look at the mass. The scanner was a highly respected specialist. He said the mass was not on my ovary (contrary to the MRI scanner) but covering it and the mass was a fibroid not cancer.

I had no further treatment as the view was the fibroid would eventually shrink as I became older and more oestrogen deficient

In 2019, after some unexplained minor bleeding I had a hysteroscopy. This was done without anaesthetic but with a anaesthetist on standby. The plan was to take the fibroid out of my womb if it was the cause of the problems. Interestingly, the hysteroscopy revealed the fibroid was still huge but it was outside my womb not in it.

The gynaecologist decided not to take the fibroid out because it would have involved a full hysterectomy and my doctors were all eager to avoid this - removing organs can cause others to move or be unsupported. This could be a particular problem for me as I have some hyper mobility and might be less of an issue for you.

I am only writing about my experience in case it helps you. If you do not want a hysterectomy and there is no cancer maybe there is an argument you do not need one? There is nothing to prevent the surgeon opening you up and if all looks ok leaving everything alone. You would have less to recover from

Obviously whilst there are similarities to our stories there are also differences. For example, I did not have enlarged ovaries.

I I pray for you that you are as fortunate as I was. In the days I waited for the blood test result and the transvaginal scan I felt very scared. I knew the odds were not in my favour based on the first scan although I did not have obvious ovarian cancer symptoms.

Like you I was told about the possibility of cancer by the wrong doctor! In my case a rheumatologist who was unbelievably abrupt. In fact he was so bad when he delivered the news about my ovarian mass, I realised the other things he was telling me ie I was fine despite autoimmune symptoms and a sky high Ana titre were also probably wrong.

After the ovarian cancer scare I came on this site and found the name of a much better rheumatologist who diagnosed my autoimmune issues properly- there was light after the cloud.

I very much hope this helps and hoping all goes well for you.

Bw

Pb

svfarmer profile image
svfarmer in reply to Pussbella

Hi Pussbella I’m so sorry you’ve had to go through something similar as me - it’s scary - at the beginning a few months ago now, it was all pointing towards cancer, I had prepared myself - I had the CA 125 test and it came back abnormal - it was not looking good but then the consultants secretary told me over the phone that my biopsy results were normal so I was very relieved but then this week they now tell me it looks like 1 mass is not cancer but the other mass could be it’s is now 12cm and is intertwined in my ovary so it all needs to come out as it’s growing all the time - I’ve calmed down about it all now and just got to get over this operation so I can be strong for the next one 💕

I am sending you virtual hugs surrounded with positiveness to help you for your surgery. I will be thinking of you. You are one amazing lady, you will get through this. We are all here to support you. 🤲

svfarmer profile image
svfarmer in reply to PositiveT

Thankyou PositiveT - love your username - your kind post made me smile 😘

Goodness SV - that’s an awful lot to take on board and process, what a shock. Lots of lovely helpful and kind words from fellow forum friends - sending positive vibes for Monday and healing hugs for afterwards. Let us know how you get on 🤗🤗🤗💐🌹🌸

Thanks Horsewhisper the lovely comments I have received from all the kind people on this forum has really touched my heart xxx

Hi Farmer. I really want to write a long post but I am flaring really badly so if I sound blunt it's only because I have to be brief. I have been thinking about you and I sincerely hope things go OK.

I'm not sure if you've had abdominal surgery before. I have had 4 ops. As a result of the surgery the bowel can become affected as the surgeon has to move it about and disturb it's natural habitat for want of a better word. For me this led to a slower bowel for about a week, on top of that strong painkillers can make you a bit constipated.

My point of this is that wound healing is vital, especially with us SLE lot and all our meds. I have always found that one of the best things for wound healing is good nutrition but it's not easy to eat well when your abdomen feels so sore.

I wonder if it would be a good idea to batch cook some really nourishing soups over the weekend and then you can freeze them and have them as and when you want? Soup is easier to face than a plate of food.

That's what I used to do anyway and I am sure it helped my wound healing and get my gut moving.

From what you describe in your post it sounds like the surgeon intends to do a laparotomy which is when they make an incision at the top of your abdomen and it goes around your belly button and finishes in your lower abdomen. This sounds very frightening I know but I am sure that they will be doing this to get the optimum access and results for your surgery. I have multiple scars on my abdomen. I used to be very self conscious but then I thought "what the heck, I'm going to wear these with pride." Those were the days when I still had bikinis in my drawer!

What I am trying to say in my waffling way is that when you wake up and come to, remember that you are a fighter and we can choose to wear our scars with pride for the journey that we have had the strength to endure. It was Princess Eugenie who had her wedding dress designed to show off her spinal scar. I admired her strength in that. Although no one says you have to be strong all the time.

I think plenty of cuddles with Mira and Bea will also give you lots of Oxytocin (the love drug) that has been shown to help pain and healing. I guess we should also remember your fiance too!!

I really will be wishing you all the best for Monday and will be wondering how you are on Sunday night etc.

I hope I haven't sounded patronising because that isn't my intention. I am finding it difficult to communicate at the moment because of this flare but ultimately want to wish you the very best of luck. I will be thinking and praying for your speedy recovery and please know that we are all there with you in spirit.

Take care and lots of love to Mira and Bea xxxx

svfarmer profile image
svfarmer in reply to happytulip

Bless you happytulip in writing this lovely post especially when you are suffering with your flaire, I do hope you will be better soon so you can get and potter in your beautiful garden. It’s funny you should say about soup, we’ve grown our own veg this year for the first time and will be making beetroot & carrot and ginger soup today as the beetroots have grown lovely - I had my left adrenal gland out 7 years ago and was left with lots of scars which I then had a tattoo of a hummingbird with flowers done over the scars which totally covered them it was amazing - now I’m abit older it’s not so important and I’m not so worried but think my bikini days will be over 😂 I got really constipated before when I had my opp so I’m prepared this time. I’ve got to make sure when I get home that I have lots of pillows that I can put on my tummy as Mira is literally always sat on me , jumping on my lap - I will have lots of love off those furry babies 🐶💕 sending lots of love your way too and often think of you xx

That was a shocker and myself I’d be annoyed to find out that way, I think you should have been told before but at least they are onto it, you know now snd what will be happening. I wish you all the best and it sounds like they are on the ball with you 🙏 stay strong 💪 best wishes for a speedy recovery 🤗

svfarmer profile image
svfarmer in reply to stiff19

Thanks Stiff xxx

Hope all goes well tomorrow.

Thinking of you, 😘😘😘

svfarmer profile image
svfarmer in reply to MEGS53

Thanks Meg - feeling a little nervous today xx

MEGS53 profile image
MEGS53 in reply to svfarmer

Totally understandable!

Sending lot and lots of hugs, 🤗🤗🤗🤗🤗🤗🤗🤗🤗

svfarmer profile image
svfarmer in reply to MEGS53

😘

MEGS53 profile image
MEGS53 in reply to svfarmer

Xxx

svfarmer profile image
svfarmer in reply to MEGS53

😘

Wishing you all the best for tomorrow. I will be thinking about you. Xx

svfarmer profile image
svfarmer in reply to JCZW

Thankyou so much xx

Hi SV, good luck for tomorrow, you will be in my thoughts xx

svfarmer profile image
svfarmer in reply to Londongigi

Thankyou so much x

good luck and sending you big big hugs xxxx

svfarmer profile image
svfarmer in reply to daniel55

Thankyou so much x

You got this svfarmer!! Sending you love and strength! 💪💪💕💕

Thinking of you today SV🤗 n sending u 💜n🤗🤗🤗🤗 n positive vibes 🌈😽😽xx

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