New Diagnosis

Hi,  I was diagnosed in November, 2019.  Only symptom was bloating.  I have had ascites drained three times.  Started chemo within the month (taxol/carbo) and the ascities cleared up after number 2. chemo.  My initial CA 125 was 1200.  Its now 94, after my 3rd chemo.  Went for my pre-op assessment yesterday, unfortunately my haemoglobin was low, so put of for a week or so.  I am 59.  I found it a real roller coaster of emotions, shock, anger (I was very active and looked after my 16 month grand-daughter).   My GP put me on anti-depressant/anxiety tablet for the duration of my treatment, which has made a huge difference.  I now feel positive and know that I am getting better and will be around for a few more years yet!  The chemo has been fine, its fear of the unknown that is worse!  Jan. x.

Hi Jan... Thank you so much for your reply which I read out to my partner as well. It is amazing that you have come so far... Fantastic for you and a very positive message for newbies like me. I have needed an occasional sleeping tablet as my nights were very broken but I may well approach my gp for something to help me cope day to day. Can I ask what meds you found effective?

My ascites is rapidly filling up again.. In hospital I was draining about 800ml a day so I would imagine that is still the case. I found the drain insertion probably the worst thing of all but entirely necessary. The Cancer Nurse will be assessing my tummy today but I hope it's not ready to drain this quickly after the last one.

Its lovely to see the spring starting to creep in now.. I'm full of hope, and a desire to live some more... I haven't done half the things I wanted to do so I cant possibly give in.

Again, it's wonderful to know someone has been through similar.. I shall find out at 12.30 what the plan is for me. Hope it's similar to yours.   Xxxx Linda (from Kent) 

Hi Linda, I'm glad you found my message re-assuring.  The longest I went between drains was 3 weeks, usually 7-8 litres!  But as soon as I started chemo, it slowed and then stopped completely after no.2.  I haven't quite lost all of my hair, although its a bit sparse and I tend to keep it covered.  The tablets the hospital give you work well.  I have never been sick and only felt nauseous a couple of times.  I've had 4 chemo's now and virtually no side effects.  Just keep drinking!  The tablet the GP prescribed is sertraline, which is mean't to be non-addictive.  My hospital (Salisbury) believe in blitzing with chemo first and then  surgery after 3 chemo's or at the end of treatment.  The op is the only bit, I'm not looking forward to, as I have never had surgery before.  Anyway good luck for later and let me know. Jan xx (from Hampshire).

Hello Jan

Hope youre well today. I went for my results and "chat" yesterday. At least there were no nasty surprises other than what I had thought.  I have stage 3c Peritoneal with ommental fold secondaries.

My abdo is filling up again and Im starting to forget what normal felt like. I think im being booked in a week today for another drain...UUUrgghh.

I think I will ask my GP for sertraline or similar as well as Im up and down like a yoyo...Nothing much happening for a while now. The oncologist is my next appt but I dont have it through yet. and the treatment sounds much like yours with possible surgery if I respond well.

Jan, when they a cycle lasts 3 weeks do you go back several times within that time? what was your schedule like?

Sorry my letter is a bit like a list but thats how my brain is operating at the moment. How is your granddaughter? I bet you look forward to seeing her so much.  One of my sons is at Loughborough uni and it looks like he might be home sooner than I though coz of CV. I shall have both of my boys back then and life may feel a bit more normal for a while.

Let me know how youre getting on Jan and tell me more about your proposed surgery that you are worried about.

Linda xxx

Hi Linda, I'm glad you are alright.  When I have chemo, I go a day or two before for blood tests to make sure everything is ok.  Chemo which is carbo/taxol takes a good six hours, through a child size cannula.  Our unit is very friendly and busy, there is always at least eight of us!  They give me anti-sickness and 3 days supply of steroids to take home.  And that is it until 3 weeks later, when it happens again.  Day 3-5, I got shooting pains and aches (1st and 2nd time only) and usually feel a bit down those couple of days, but apart from hair loss and dry skin, not much else.  As I now have a flat tummy, it does feel like I'm wearing a large belt, but the Oncologist told me its normal.  Again fear of the unknown is worse, especially if you have a mind that works overtime, like mine!  But you will be given the telephone numbers of your unit/nurse, who can answer any queries or worries you may have. You have to take your temperature daily, but that's about it.  Just do what you feel like.  My operation if for a hysterectomy, removal of the ommentom and part of the peritoneumn (as I am classed as high grade ovarian cancer with a small spread to the peritoneal.  I have my oldest son (32) and his girlfriend living with us, plus my second son and his wife and my grand-daughter, as they are renovating their house, so quite a houseful.  I also have a daughter, who had a baby boy two weeks ago.  That has been the worse for me, because I couldn't be there for her.  Anyway, don't let the fluid get to un-comfortable. Any questions, just ask.  Jan. x.

Hi 

I too am a nurse and thought my bloating was a fibroid! 8 litres of acities later I discovered I had a CA125 of 5000 and peritoneal cancer! 
I am 51 years old with three sons! 
this was a massive shock to me too... but like Jan has said the chemotherapy is not nearly as bad as you think and it helps get rid of that fluid build up! I felt truly rotten with that as I’m sure you do? 
I am very much into nutrition but each person is different. I just eat what you fancy as you will have weight loss. I have lost 10kg but I’ve stayed the same now and to be honest apart from having no hair I look good! 
People who don’t know do not say anything to me at all! I thought people would guess I’d got the big C 

Try to keep positive and chat to us as much as you like we all need to stick together 

Sam x 

Hi Sam

Thankyou for writing to me..it really makes you feel better knowing youre not the only one.

I havnt even had my appt to discuss the chemo yet and am really anxious to get things moving. How far through your treatment are you now? Are you having surgery?

I am an endoscopy nurse who couldve taken retirement next month ( how ironic) but before that and for most of my career I was a District Nurse which in the "old" days was a fantastic job. Like you I really didnt read my own symptoms although arguably there werent many to go on.

What age are your sons? I have 2 at 17 and 19. One is away at uni and the youngest is here with me. It must be very strange to see their active mum become so debilitated. Im being honest with them throughout but hopefully not scaring them half to death.  How have you found your everyday routines pan out ? my sensation for micturition and bowels has disappeared so I have to "toilet" myself regularly. I am also a new found convert to Senna after all of these years doling it out to countless patients.

My ascites is really my biggest symptom currently..I am filling up again and am being booked in for next friday for another drainage which I found horribly painful so Im both dreading and looking forward to it. I feel 7 months pregnant but without the bundle of joy to look forward to.

BTW..Im so pleased youre taking nutrition seriously, I can honestly say my diet has never been so good. I was a lifetime vegetarian anyway so diet was always pretty good but now I am adding in superfoods, berries, antioxidents, far more protein, milkthistle, tumeric etc etc. I treat myself to a new nutribullet as mine was on its last legs. Keep up the good work Sam.

Certainly nobody asks for this crap to fall from a great height but I try to remain positive that other strong women like you and Jan have been through it and survived..I too can do that.

Please write me more how things are. 

Love Linda xx

Im glad you are takeng nutrition

Hi Jan

Hope youre ok . I would imagine theres never a dull moment at your house which is nice. Mines a bit like that but especially when my son comes home from uni.  I must say Im a bit worried about the Coronavirus as by the time I am immunosupressed from my chemo it really will be at full capacity. My partner and i are wondering how best to isolate oneself.  even now coz Ive got my pleural effusions I am more vulnerable so am being very careful etc...

It must be a worry with your new grandson and your grandaughter too. what strange days were living in eh?

anyway Jan I hope you have a lovely day...write soon. I take great strength from your letters  thankyou.

Love Linda xx 

Hi Linda, I am doing fine.  I'm hoping my haemoglobin level comes back up this week, so we can re-book the operation and get it over and done with.  I hope you are feeling OK.  I'm glad you are in touch with Sam.  We speak to each on the phone and e-mail as well.  Its so nice not to feel isolated and have others to talk to who are in the same boat!  As for the coronavirus, I don't really go out at the moment, or if we go shopping, I stay in the car and let my husband do it!  If I do go anywhere, I wear gloves, so I'm not touching surfaces.  I was like this anyway before coronavirus, so I didn't get any colds or tummy bugs.  Its just common sense really.  Look after yourself and speak soon.  Love Jan.x.

Hi Linda, 

I hope you are feeling ok? I can honestly say the fluid build up was the worst thing so far! It affects your digestion (feeling sick etc, and elimination in every way) I too, said that I dreaded having it drained but, was also pleased to have it done and couldn't get to the hospital fast enough! I was told by my oncologist I could only have it drained twice I'm unsure why? Anyway I was due to go for chemo the following week and was already very uncomfortable so, I literally begged the nurse to fit me in sooner! So, I went for my chemo a week early and thankfully this stopped it from building up again. The chemo has made me need the toilet quite quickly and have resorted to wearing pull ups don't read too much into this though as it may not affect you like it has me. My oncologist looked at me very strange when I said I can't stop wetting myself! 

Nutrition is my passion and I wish I had studied that at Uni as opposed to nursing! I was a practice nurse which I loved but before being ill I was working as an agency nurse. I think looking after yourself through diet must have some benefits. I was always been told by work colleagues they couldn't drink the green gunk I was having! I juice mainly but do have smoothies too. 

My sons are 29 (Will) 27 (Edward) and my youngest son who's a paramedic is 23 called Charlie they all live at home at the moment but Charlie has just bought a cottage which I would have loved to help with he wallpapering etc and frustrated because I can't! 

I have had 2 chemo doses and due one this week. I am then booked for a CT scan the week after to see if it has worked (which I am dreading) then I am due to have surgery. I try not to think too far ahead because this week I will be worried so the weeks I don't have anything looming I try to enjoy. 

Have you had a scan? They will have you in to check your kidney function which takes a few hours and then they will book you for chemo I think? My plan was 3 chemo sessions an operation then 3 more chemo. But, I guess this can alter depending on results because if the chemo hasn't shrunk the tumour then I will probably need more chemo? Not sure? My ovaries are clear but I have peritoneal cancer which I had never heard of despite being a nurse! In fact I just sat there saying but where is it...... I was also shocked at how I had a nurse there asking me if I had any questions but I just sat there numb! 

I am about to take my little dog for a walk It is about the only thing I do these days but it is enjoyable. I hope the fluid isn't driving you mad.

Keep in touch 

Sam xx