Likely ovarian. Terrified. Anyone available for a hand hold?

[Ohjoyohbliss]

Blood test yesterday: Serum CA 125 level over 35 indicates possible cancer. Mine is 213. Shit.

DH knows and one friend but I don't want to worry anyone else until I know how bad it is; hence I've name changed for this post. I'd love to know how anyone else has coped / is coping.

CT scan Saturday and USS on Monday. GP has made 2ww gynae referral today.

I hope this afternoon with your book club ladies for a drink or maybe a pudding went well. x

It will be fun (not) having a cannula put in for the chemo tomorrow. Yesterday it took two nurses two attempts to get a blood sample. On Monday it took no less than three nurses three attempts to get enough to test. My veins were poor to start with and have basically been destroyed by all these attempts to get blood out or push drugs in, over the last two months plus.

I’m in the same boat re: the poor veins @OhjoyohblissThey’ve told me I need to have a port fitted. Apparently no more vein stabbing and prodding with one in.

I asked about a port or a picc line and they said no. No to a port a cath because they can't guarantee the availability of staff trained to use it and no to a picc line because of the risk of infection and it having to be cleaned frequently or some such. One of my cell mates in Pinderfields prison had a picc line but I think that was partly due to an allergy to micropore tape and her chemo regime was more frequent than mine.

My DH has regular blood tests and has difficult veins. He’s housebound and the home service is provided by the district nurses. They all have trouble finding his veins, and he has the same problem in hospital when they try to insert cannulas. A while ago we had someone from the phlebotomy service come out to do his regular blood test and he told us that many people aren’t aware that after three attempts you are entitled to request a phlebotomist. This is what they do all day and they are much more skilled at identifying suitable veins and getting it right first time instead of leaving you feeling like a pin cushion.

I’ve never heard such excuses. Where are you going for your chemo? Surely the nurses know how to use a picc line??? I have one although tbh it is only used on the infusion suite and you need to go in weekly to get it cleaned and flushed is that the bit they don’t want to do? No other places will use it so I still have bloods taken the old fashioned way.

I've had a PICC line too, and cleaned and flushed it myself at home (once I'd been trained and they were happy I was competent). I had a nurse come to my home once a week to change the dressing, but other than that, I flushed, cleaned, administered medication and even great big bags of TPN (liquid food) which I had to carry in a backpack if I wanted to move around!

PICC lines are not as complicated and scary as they're making out, I too have terrible veins (tiny and wiggly), and have ended up with cannulas in my feet on more than one occasion! I would ask again @Ohjoyohbliss, it's far less hassle (and less frustrating!) than being pricked multiple times. I had an ITU admission in August, and I still have bruises on my forearms from where nurses, who ignored my advice on where I would be easiest to cannulate, blew veins. Far less impressive are the two teeny, tiny scars, each on the top of my inner arms, from where my PICC lines have been situated!

My partner had a PICC line for his chemo for stage 3 Colon Cancer, I can't understand the clinical rationale for not giving you one.

I know hospitals vary and anyone lucky enough to be treated at a centre of excellence won't realise how much poorer the experience is at a district general. Not sure where Pinderfields fits in there.

I had a PICC line fitted and my hospital is in the bottom 10 ranked in England.

It's true that not all staff can use them, also there were still cannulas because whenever I needed a CT with contrast the staff claimed to be unable to use the PICC line. My chemo was weekly and one week I had three cannulas plus one botched attempt and they finally agreed to a PICC.
I had a district nurse came to dress it weekly - I seem to recall that you were getting a district nurse for something else?

So don't give up asking.

Thankfully the nurse was successful with her first attempt with the cannula. She put a heat pad on my hand & arm for a while before trying.

I've finished the long Infusion - Rituximab - (with half hourly obs) and the second (Polotusimab) is nearly ended. Then only the Doxorubicin bolus and the Cyclophosphamide to go.

I had Akynzeo anti-sickness medication an hour before the chemo started and this should be effective for 3-5 days, so fingers crossed!

Good luck, I’m rooting for a better round for you 💕

24 hours on from the chemo, feeling a bit queasy but no vomiting as yet. By this time last cycle I had been sick multiple times.

Took a major step today. My hair had thinned so much, the remaining strands were resembling a Rab C Nesbitt style comb-over. So DH attacked it, first with scissors (I made the ceremonial first cut) and then clippers set to no. 4. I hate it. It looks awful. It had to be done.

So glad you have so far kept sickness at bay, fingers crossed for you.
Sorry about your hair, hope you can cover your head with something comfy and soft if it helps not to look at it too much yet.

Just following from afar and wishing you all the very best. 🌷

@HitthefloorforTaintedLove
I have an assortment of caps and scarves from Macmillan and Anna Bandana but I'm still waiting for my wig consultation referral; it's been weeks.

I've been covering my head when I'm out, but just wearing a headband at home prior to today, but now I'm wearing a cap in the house too.

Let’s hope that sickness stays firmly away 🤞🤞 Is it a 3 weekly chemo regime you are on @Ohjoyohbliss?

I too have an assortment of caps and hats. I prefer cotton and brightly coloured. I hope you can find some nice headwear too.

Yes, six sessions, three weeks apart. I should be having a PET scan in Leeds before the next session, because I'm at the half way point, to see how well it is working. Haven't yet got a date for that, but I've been assured that the referral has been made.

I actually got a missed call from a Leeds number on Friday afternoon (I was on my way home from hospital and couldn't get to my phone) which may have been about the PET scan or the wig fitting but they didn't ring back, so I don't know. I rang the number but it was a message saying they don't accept incoming calls.

It could well have been the hospital calling you, hopefully regarding either the wig fitting or the scan date.

Let’s hope all that chemo is doing it’s job! 🤞

Try putting the number into ChatGPT - they can usually trace the source. Might help alleviate your concern that it might have been an important call or give you an idea who to phone back via a main number perhaps.

I’m so glad the sickness has abated, it’s such an awful feeling hard to escape from and difficult to stop once you start. Fingers crossed for the PET scan x

PET scan is now booked for next Monday.

Wig session not until November.

Good luck for next Monday @Ohjoyohbliss🤞
What’s taking the time re: wig session?

I hope your scan goes well @Ohjoyohbliss

How are you @Ohjoyohbliss How did the scan go?

I hope all is OK.