Fat belly? No. Ovarian Cancer belly (pt 2)

[TwitterQueen1]

The story of my ovarian cancer discovery is here

This is such an important health issue - there's a reason why OC is called the 'silent killer'. I really want more women to be aware of what few symptoms there are (I wasn't).

This is my story. I hope it's a long one.

Oh I'm really sorry to hear this. Let's hope it will improve with the week off. Do you have anything to soothe the skin? Aveeno products work well on sore dry skin ( available from Boots). Poor you how frustrating.

Tx GG It's not rare at all - I've checked through the paperwork. It's common as muck, which is a relief really. I can't blame my consultant - this is new to him as well as me (the Cediranib part) and he went to have a lengthy chat with the clinical lead to make a decision. I'm happy to have a reduced dose, I just don't want them to forget me!

Oh no TQ that sounds awful and so painful. You poor poor thing. It must be incredibly difficult as presumably everything you do is a source of discomfort. Hoping that a break in treatment helps them get to the bottom of what it is. I'm thinking of you, how completely rotten this must be for you. I hope you've got something yummy to hand (unintentional pun) by way of a treat and something to watch on TV or a good audiobook to take your mind off it. Lots of love to you. P

The good news is that I can continue on the trial on a reduced dose. I am obviously very happy with this! I had a very long day in hospital today, only because I had to wait hours for the pharmacy to send the new drugs. I could have gone up again tomorrow but it's a 2.5 hour minimum round trip, even though it's only West Berks to Oxford and I have my own private car parking space . I was asked to go in early, so I left at 10am and didn't get back til 6pm. It's exhausting doing nothing. And surprisingly stressful. I find it easier when there is lots of other stuff going on around me.

So I start again tomorrow, on a Mon-Fri regime. When I go up on Thursday I will effectively start month 2 so they will note my CA125 marker again. It was 560 a month ago so I'm hoping it will have reduced significantly. No-one seems to know why I'm breathless though..

That is a very long and exhausting day for you but I’m so pleased you remain on the trial . Did they have any advice about the best sort of emollient cream or lotion for your sore hands and feet ? If I can get anything for you do let me know . Would love to be of practical help.
The waiting is dreadful for you, and maybe the stress of it is making you (subconsciously) a bit breathless? Anxiety does strange things I know .
Thinking of you , I hope you are sitting in a comfortable chair having a big glass of wine !
Those instructions would have foxed me, no reflection on your intelligence at all ....and knowing how important it is to get the dosage correct, I’m surprised it wasn’t set out clearly in writing .
Take care x

Tx GG I don't know why I'm so emotional today - crying on the ward and tonight too. Relief from the stress of not knowing what was happening I think. And my phone and Kindle both ran out of juice. I suspect you might be right about stress and breathlessness too. I had pleural effusion previously but the CT scan would have picked this up if it had come back.
No advice on the cream but I have plenty of options I think. Moo Goo has been recommended.

Large glass of wine has been consumed! Back up again on Thursday.

Sending you a hug TQ. Glad you're back on again but it sounds like you had an exhausting and stressful day.

How are your hands now?

Have you had much snow? - a couple of inches here (nw London) looks v pretty.

I started cycle 2 on Thursday (monthly cycles) and so far so good, though I have a lot of pins & needles but thankfully no skin lesions or potential blistering (touching every bit of wood in sight). Still no CA125 marker update - apparently that one takes longer to come though so I won't know until next week sometime. Right now, that's the only measure I have to gauge whether or not the cancer is changing / growing / reducing.

Watch and wait...

Hi TQ. Sorry I slipped under the radar. Been going through “stuff” as a family & teen DD seems determined to give me a few grey hairs! We are at least talking to each other & she told me today she loves me so hopefully a good sign! I would like the sweet little girl back!

I am pleased that you are on the arm of the drug trial that you had hoped for though disappointed to learn of the unpleasant side effects you have had. Hope you have had a better few days. Are you watching any tv to distract yourself? Think we need Mr Poldark back. Am very impressed by your crochet and by pp’s jumper. Am rubbish at knitting & never learnt to crochet.
How disappointing about the bouquet of flowers. What are your favourite flowers? for you- roses and lilies.

My first bunch was from a patient & I embarrassed myself by talking out loud admiring them to myself without realising that the consultant had entered the office right behind me .

Hi Scarlett sorry to hear about your 'stuff'. I'd love to know who all these people are who apparently have normal, trouble-free lives. My three DDs never had the opportunity to rebel or be horrible because their father was dx with stage 4 leukaemia in 2008 and we were all told he was going to die - he very nearly did, but pulled through after a stem cell transplant.

My crochet is keeping me occupied in the evenings - just as well as the tv is rubbish. I loved Line of Duty and Killing Eve (until the last, silly episode..).

I got my CA125 blood result back - it hasn't gone down at all, in fact it's gone up from 570 to 679 ('normal' is 35). I know it's unreliable, I know it's early days, I know it doesn't mean the drugs aren't working, but it's still upsetting. It's the only measure I have until my next scan, which I'm told will be around mid-February.

Pennina We're in the 2-5 cm snow band tonight, fingers crossed!

Hello TQ, hope you are keeping warm. I’m sorry your blood test did not show an improvement but the rise is not huge, maybe it is too soon to expect something significant? I’m no medic of course but I appreciate it’s a disappointment. What a shite disease this is. You’ve helped two friends btw, I’ve sent both off for exploratory tests based on your experience. One had a 7lb fibroid removed . Nothing sinister in either case but could have been different.
Do you have Netflix? I’ve been watching The Chef’s Table, fascinating series about restaurants around the world , I really recommend it. I’m with you re the silly ending of Killing Eve, part of it was filmed in the woods I walk in, I now find myself looking out for lone gunmen chasing me ...
Thinking of you x

How lovely to hear that about your friends GG, that really does cheer me up!
Yes I've watching Chef's Table too, though I've only seen about 4 episodes. I liked the similar one that's now on W, which is a pay channel. It was US Masterchef I think - harsh and lots of arguments but entertaining!

Hi TQ sorry about the Ca125 but as you say it is still early days.

You are right about the rebelling stuff. I wonder if I would have rebelled if my mum hadn’t been so ill. I look at the pupils sailing through school with stellar results & glowing reports of their success by their parents (also of cousins within the family!) & feel a wee bit envious tbh. DD does not wish to do an academic degree & I am trying to encourage her as much as possible. ( high IQ but poor memory & dyslexia & some members of the family appear to have barely concealed disdain for her).

I totally agree with you & GG about Killing Eve. DH & I felt we probably wouldn’t bother with the sequel. Surprisingly I am enjoying Friends - I have a childish sense of humour at times.

GG I've got confused between Final Table and Chef's Table... I will put Chef's on my 'to watch' list thank you.

Weakness and fatigue is beginning to kick in. I'm struggling with my walks so need to adjust expectations. I tried to go for a walk in the snow at the weekend and had to turn back onto the path and I'm making good use of the chairs in M&S. I'm at the hospital again on Thursday so will ask about the CA125 and other stuff. I am developing very tiny (at the moment) freckles/moles around my lips so now i'm convinced I've got melanoma.. It's very tiresome and boring being so self-obsessed!

It has been really cold though , and when you are unwell, any sort of exertion is hard in bitterly cold weather . I hope you are feeling a bit stronger today . I was in London for the day last Thursday and had to give up and come home, just could not manage to get around. The cold really affected me .
I’m sure you will get reassurance re the moles/freckles, I’ve got loads and have had various biopsies, just the dreaded age spots developing .
Fingers firmly crossed for tomorrow in any event. I’m not minimising what you are going through, it is shite and I wish it was not so.
The Chef’s Table would be great distraction- the one on Italy and the mad chef in Patagonia are my favourites!

All done and dusted! Bloody awful journey as usual - it takes over an hour to travel 30 miles and wade through queue after queue. Thank goodness for my lovely parking spot .

Apparently today was not a consultant day, which was a shame because I had a lot of questions, however my nurse asked a doctor to come and see me and was very reassuring. The brown freckles /spots aren't infected or a rash or thrush, so no worries there (maybe they are age spots GG!). The weakness is normal and she was expecting me to be worse than I am. The CA125 marker can't really be assessed until the results of the next scan, which is in 2 weeks' time.

So it's business as usual.

Hi Twitter Queen, I stumbled across your thread and have spent the weekend reading through as I'm Berkshire based and had a family member affected by OC in the early 80s. Oxford is a mare to get to most days, I keep thinking of what to write that says what I have thought reading your thread but they would all sound like cliches! Think I would like to say thank you for taking the time for posting, I often wonder if I am a ticking time bomb because of my family history but try not to think too much about it! If you ever need someone to come spend time and talk about anything and everything I'm there, you choose the subject,I've been on here for about 14 years was under an old name and dip in and out now.

Hello Dishevelled! How nice to (virtually) meet you . Thank you for both reading and posting. I don't know if you read my 1st thread too but it's just about 2 years since I was diagnosed; I first posted on 27th Feb '17. Two years... I didn't think I'd still be here.

Sorry to hear you have a family history. Have you been tested for the BRCA gene? I'm negative thankfully but that's no guarantee of course. You're bound to be worried - do keep an eye out for symptoms and don't ignore them like I did! I'm always up for a chat.

Yes I have read both and saw you've been at the RBH and now participating in a trial in Oxford. Haven't been tested, one of these days I might have the chat again with the gp's as last time got told per guidelines I'm not at risk but please don't think I'm here to offload on you, I'm just a fellow mumsnetter,someone to talk to about whatever! Happy to Pm you tell you more about me, where I am etc but will leave that with you to decide.

Ps if you're looking for something binge-worthy I just watched "when heroes fly" on Netflix last weekend (when I should have been doing expenses). It's subtitled but easy to follow.

TQ, I just wanted to send warm wishes. I came across your thread today for the first time and at 1.52am I have just finished catching up on them both. (I will be buggered for work tomorrow)

I am so impressed with your bravery, I get the single parent loneliness and the shit exH but fortunately for me I haven't had horrendous cancer battles. You are pretty awesome you know? I'm crossing everything that the JR work some magic on you in the latest trials

Just found your thread. . Sending love and good wishes x

Hello NameWithChange and Jasper and Dishevelled I can't tell you I touched I am that you have read my threads. It means so much to me. Thanks for the warm wishes too. I'm at the Churchill Name, not the JR, being treated very well.

I'll take the Brave badge tx .

Dishevelled I'll PM you later.

TwitterQueen there is no rush, just when suits you.Glad you're being treated very well and so you should be. I used to have to take 1 of my sprogs to medical appointments regularly and specifically requested not the RBH anymore as parking used to give me the rage. Went to Ascot instead, found a few hidden gems for parking which was a godsend. It's all these little things like ease of parking that make it less tiring overall.

Hi TQ hope you are ok & finding things to distract you. Do you still enjoy cashews?

@Dishevelled09 - you would be perfectly within your rights to ask your GP to refer you to a genetic counsellor. I asked to be referred for one condition & the counsellor cottoned on to my family history and ensured that I was tested & given advice re ovarian & bowel cancer.