Cancer Support #70. Please post on this thread, not #69, If you have cancer or are undergoing tests for cancer. Rant, rave, scream, cry – whatever helps. Supportive lurkers for Leslie welcome on #69.

[TwitterQueen1]

Thread #69 is filling up with messages of support for one of our own who is very seriously ill. Leslie told me a few weeks ago that she didn’t want any such messages to get in the way of those who need support through their cancer treatment so we are starting a new thread just for those who do have cancer or who are having tests. Could we respectfully ask lurkers and supportive posters to confine their comments to thread #69? Thank you.

We normally start with a brief introduction to our cancers – I’ll kick off. Ovarian cancer dx March 2017. Now on third-line treatment with a trial providing targeted and chemo drugs taken orally.

For goodness sake, please don’t think like that. The last thing that anyone would want is for this thread to stop being a place where people can post what they need of want to post whenever they need to do it

We can mourn our dear departed, and at the same time keep on looking out for everyone on the thread, whatever is going on with them at the time

Red please don't feel like that. This is the cancer support thread and its main purpose is just that. Of course we are mourning purple but everyone's problems hasn't stopped because of this so you have nothing to worry about.
Re purple's "I only have a few months" - it was indeed hopeful as she wanted to make it to her ds 18tth- which she did - because she was was scared it might happen sooner. Having said that it was all very sudden and we're all trying to get our heads around how / what exactly happened.

Her ds has added the most beautiful / heartbreaking tribute to her on fb. There's been a crazy outpouring of messages to her family as well. She was indeed very much loved.
For those who asked, her rl name was Becky. Rest in peace beautiful girl.

Hey Redspook - glad you’re feeling a bit better.

What I love about these threads is that they both (a) give you support at whatever stage you’re at and (b) give a sense of perspective because you are able to learn from those at a different place in the journey

When Leslie died a new thread was created so that newbies could post their fears comfortably- do people think that might be appropriate now? We may be getting close to the post limit anyway?

De-lurking to say how sorry I am to hear about Purple's passing. Like everyone else, I guess, I was reading her posts and hoping against hope that something would be sorted for her. My thoughts and all good wishes to her family, who must be devastated

Oh purple

Dearest Purple...so very sorry...you were amazing. I remember just how selfless you always were. Always so kind and helpful. And always thinking of your family...and others. A remarkable woman. You will be missed xx

Delurking also, I am so sorry to read that purple has gained her wings, shine bright lovely lady xxx

Red I had a PET scan and CT (didn't have MRI) as I was told it was the best scan to show if there was cancer elsewhere in my body. It's not Medicare funded here (Aus) so it cost me but I trusted my oncologist that it would give me the clearest idea of what was going on. Tbh knowing it didn't show up anything other than what they had already found has been really reassuring. Hopefully reassurance is what it will give you too, but if not I think it's best to know what you are dealing with so your treatment team can make the best decisions for you. Fingers crossed xx

Haven't been on here for a couple of days as been away on holiday. I logged on today to see how Purple was doing and gutted to find out that she has died. Much love to her family

@purpleunicorns DH and I are in London just now so I perved over Hugh Jack man last night enough for all of us and will admit to weeping during one of the songs. You are so loved and will be so missed darling 💜🦄

for purple.

Oh Purple, you lovely brave lady 💜💜💜💜💜💜💜💜💜💜💜💜

Thank you dulce. I'm so sorry to hear of purple's death.
So terribly sad. My thoughts are with her family xx

I have a question please. I think I have the early symptoms of neuropathy. Numbness in fingers. (Not sure because I had a big arthritis flare up last week probably caused by Zoplidronoc infusion the week before so it could be after effects of that). Has anybody any experience of this kind of numbness and if so what impact did it have on the chemo? Did they stop or delay it or change it in any way? Seeing the oncologist during the week so will find out then bit just a bit anxious

Highly highly unlikely to do anything at all. It's very normal.

Thank you TQ.

I have peripheral neuropathy meercat. Numb toes - I took a nasty fall recently as I couldn't really feel my toes and was wearing sandals - and I've lost a couple of toenails. Tingling fingers, sometimes the tips go red, sometimes my whole hand is tingly. It won't impact on your Chemo - I spoke to my oncologist about it last time I saw him (so between Chemo rounds 5 and 6) and it's just one of the expected side effects of taxol drugs.

Thank you Snow. I just wondered as they keep asking about it and this week it has happened. So many weird side effects I find myself second guessing every little thing. Got anxious yesterday about bright yellow wee and poo until I remembered the Turmeric Tea I have been drinking on the recommendation of the chemo nurses!!

Thanks to all who have "had a word" with me, and to snow for sharing her experience.
I am thankful that the NHS are throwing all of these tests at me, and aware that those in other countries may not get so much.
DP's take on the request for a PET scan is more optimistic in that he thinks it's possible that they are considering treatment on the basis that the cancer has not spread far, and the PET scan is an extra test to be sure that they are right.

So sorry to hear about purple, she was so very ill, but still a shock
Fly high.

Bittersweet moment here - the expensive ‘lacy’ running top that purple egged me on into getting (carpe diem) arrived today

Not sure when I’ll get to wear it out tho - I’ve crocked my achilles and have to rest for a while

Things have changed. I got a call today cancelling my appointment tomorrow (although I will still have the PET scan).
I finally managed to speak to someone. Surgery is not an option, it's gone too far for that. They need the PET scan and a sigmoidoscopy, as it may have spread to my bowel. So I'm waiting another couple of weeks for the treatment plan I had hoped to receive tomorrow.
The likely treatment is chemoradiotherapy, at the same time.
I had hoped to avoid chemo, and in my head surgery was going to be the main part of the treatment.
My head's spinning. I've had to come home from work, I need to talk to DP when he gets in.

Redspook

Sorry to hear the plan is not what you thought it would be. It’s always upsetting when things change from what you expected. They don’t sound like they’ve been too great at communicating with you.

I have breast cancer so not familiar with this treatment. Are they saying they will do the chemo radiotherapy first and then surgery or no surgery at all?

I am sure they will come up with the best plan for you in the next couple of weeks. I know the waiting to start treatment is hard.

Xx

redspook. So sorry to hear that you are facing a longer wait to find out about your treatment plan

In all of the horribleness of pthis disease I think it is the uncertainty and waiting that are amongst the hardest to deal with. I hope that you get some clarity as quickly as possible.

Thanks Mrs.
It looks likely there'll be no surgery at all. That scares me.
The communication has been ok really, however I wasn't impressed that the woman who rang to cancel my appointment couldn't tell me why. It took a couple of hours to speak to someone who could give me more information - not very long really but it felt like a fortnight.