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.

Well the chemo brain fog is a bit more than fog unfortunately - it's brain mets. The consultant didn't like my stories of ineptitude at petrol pumps and Argos and whisked me down for an emergency brain CT (much to the (understandable) irritation of someone who'd been waiting a while).

I'm off the trial and being lined up for radiosurgery / radiotherapy. The body tumours have taken back seat for the moment. Can't tell the DDs yet - 2nd year finals next week - there's no rush though. One day at a time.

Sorry to hear that TQ. I hope the test are quick and indicate a solid way forward.

Damnit TQ I’m sorry to hear that... you sound so calm and pragmatic... I am sending you love tonight

Oh TwitterQueen that is horrible news, I am very sorry.

Oh, TQ I’m so sorry to read that.

If that’s it for the trial (for good, I suppose) what does that mean for your backseat bodily treatment? Do they have to suspend it totally for a while? And even though it doesn’t sound like you had time for scanxiety this time round, are there more tests lined up whilst they work out what to do next?

Kudos for your last sentence! What are your plans for today?

Welcome maysong - how’s it going?

Bloodybridget congrats on the arrival of the great-nephew! Have you arranged to meet him? I bet his social calendar is packed right now!

to purple

I’m off to see my DMum this weekend, which I’m looking forward to.

Oh TQ what a shock. Do you know when your radiotherapy will start? If there's ANYTHING I can do/send you then let me know

Congratulations on your great nephew Bridget

I hope you have a lovely weekend with your mum Ivampire

My nurse has put me on antibiotics to see if it helps the fistula which is just as well as I think I'm getting another kidney infection so the antibiotics should help with that too. I'm seeing my oncologist on Monday to see if there's anything he can do with the fistula, I really hope so as it's so painful I have to spend most of the day sitting down and trying not to move

And I managed to fall over this morning as the steroids I'm taking for neuropathy have made my leg muscles so weak I can't walk properly

Shit TQ, I’m so very shocked and sorry to see your latest update. I remember you mentioning those odd episodes and assumed it was all fog, but were you worrying secretly? A good thing you mentioned it to your consultant and that he acted on it immediately. I hope you will now start to find the team more responsive to your messages when you need answers. I guess you are back in the waiting game for results and a plan for what comes next. So sorry and you can’t even share with your girls. Do you have some good friends though who you can offload to? Love and strength to you from me .

And much the same for you too, purple. Sorry that you are experiencing so much discomfort and pain, and I hope one of the HCPs can give you some useful help.

Congrats on the new family member Bridget! Nice to get cheery news as well on here.

Mindful that it is utter trivia in the context of the above but hoping it is good to contribute all manner of updates on here, I have had the head shaved and feel better for it, oddly. Turns out my head is reasonably inoffensively shaped . I look a bit like Ripley in Alien3 but shorter and fewer muscles.

purple. I hope the antibiotics work fast and do help and that the oncologist can work something helpful out quickly. Take care

Well done on shaving it Brassica! I know tough it is but I knew you'd feel better for doing it. Do you have wigs? I bought loads before shaving mine and never ended up wearing them. I just wore a beanie hat when it was cold.

I too hope you have some good friends you can talk to TQ but if not you always have us lot

Hey TQ I'm a bit lost as to what to say. It's such shitty news but I'm glad you've told your consultant and that there is a plan in place. Oh how I wish it was 'just' chemo brain. Bless you for protecting the girls, I totally get you. Have you told anyone in RL or just us?
I hope you manage a good weekend. One day at a time is how we should all approach this.

Purple I hope the oncologist can do something about this stupid fistula. You don't need this on top of everything else. When are you seeing him?

I hope everyone else is coping ok. Weather here is crap and I feel like hiding under a blanket for the day.

Brassica No I had no idea at all. Brain fog is a very very common side effect of chemo and it's very rare to get brain mets with ov ca - less rare in breast or lung. My consultant did say it was a step up from the normal fog though, and the fact that the left-hand side of my body felt 'dead' wasn't good. I've also learned to tell any side effects.

Well done on shaving your head! I found it very empowering and wore my baldness as a badge of courage. Ripley

Now that I'm no longer with the Early Phase Clinical Trials unit it will be a different team.

Purple I hope you get some joy with the oncologist. Falling over is not a good thing.
The steroids have now made my hands shakier than ever and I've just spilt tea everywhere.

iVampire the body cancer is on the back burner. The priority is the mets.

They've managed to squeeze me in for an MRI this afternoon. Can't drive so it's shank's pony for me. Two trains and a taxi I think.

Bridget congrats on the great nephew !

I'll take all the love and strength I can get please. I was just beginning to hope again. I renewed my passport this week and arranged a home visit for potential dog fostering. You lot do give me so much support. It's important to me to be as independent as I can so I don't want to ask for lifts just yet. And I'd rather be on my own whilst I'm having treatment. But I can't stop crying.

Of course. The sense of hope being taken away is very very powerful and more upsetting than if you hadn’t let hope creep in. Crying is obviously the natural reaction and let it all come out. Do you think maybe telling your daughter who doesn’t live at home would be doable, still keeping it from your daughter at college for understandable reasons? I bet you are doing all this to protect them but I can only imagine they would be desperate to give you support if they knew, and you do need some real hugs as well as virtual ones. This is ultimately a lonely journey but do think about real life help. I’m worried for you travelling to the scan too, is a taxi not possible or just too far? Any kindly neighbours who could help? Hope the MRI is not too ghastly, right now put one foot in front of the other and keep talking on here. Xx

Hi TQ - hope the MRI goes ok. Brain nets are quite common for melanoma so I’ve had a couple of head MRIs, my last one on Monday. I ask for 80s music, shut my eyes and try to imagine I’m on a beach (my happy place!). A noisy beach, admittedly, but you know what I mean. So sorry you’re going through this - so bloody unfair xx

Purple - hope someone can help with the discomfort

Dulce - the blanket sounds like a good option. How are you doing?

My scans came back clear this week so that’s good news. I’m really not sure what’s going on my immunotherapy though. My second dose got delayed because my ALT levels for my liver were raised - they’d dropped the next week so I got the second dose. Went for my third dose on Wednesday- we didn’t get my ALT levels back because something went wrong with the sample but the oncologist was happy to go ahead as everything else was ok.

Then I got a call yesterday to say I need another blood test next week- when the ALT levels eventually came in they were raised - “not worryingly so” but I need to be kept an eye on. So in the grand scheme of things not an issue, especially with what is going on for everyone else, but I hate the uncertainty. I think my biggest worry is that they’ll have to stop the treatment, and I’m already on the least “toxic” immunotherapy drug.

I'm so sorry to hear your news tq, that really is crap.

TQ I'm very sorry to hear you have had this news. I am sending love and hugs. I know you are a very independent, capable woman however if you need to talk we are all here.

xx

I see him on Monday Dulce, I have been hiding under a blanket all day as I've spent today in bed dozing and reading

Oh TQ I want to give you the biggest hug ever. Of course you're going to be upset so cry as much as you need to but please do take any help that's offered. I understand you not wanting to tell your daughter but they love you and want to help you in whatever way they can. Can you get hospital transport? Or would they be able to do the radiotherapy in a hospital closer to you?

Toofar that's brilliant news on your clear scan

TQ hope the MRI was tolerable. Sending virtual handhold for this hard time.
Brassica, glad to hear you gave yourself a new look; Ripley in Aliens, phwoarr!
Thanks for all the great-nephew congrats! We are going to see them next Thursday, the day before I go into hospital, so that's brilliant!

I will tell the DDs when DD3 has finished end of year exams at the end of next week.

Brassica I would put one foot in the front of the other except I would fall over! . As long as they are a good distance apart I'm OK

MRI was weird! Sounded like next-door attempting torture by drill bits and hammering.

I think you’re doing the right thing in keeping it under wraps from your DDs until exams are over. They’ll understand.

And as we all learn when we have to tell the DC the first time, the fewer the uncertainties the better - so waiting for MRI results (when do you get them?) and a treatment plan might be a good thing anyhow.

But that’s from the POV of caring for your DDs. What support do you want/need? Who is there for you? Especially over the next week.

If you’ve chosen to stag on alone, lean on us. I’m sleeping atrociously, so might be around at odd times.

You inspired me, BTW, to carpe diem and order the (expensive) running top I’d spotted but couldn’t quite justify getting, it’s a trompe l’oeuil (sp?) lace pattern.

TooFar I have had wandering ATL levels. Now it might not be quite the same for you (I’m on a targeted inhibitor) but it’s OK to have mildly elevated levels. What they don’t want to see is a continuing rise, or trouble with other enzymes or hb

Fingers crossed for you that it is just inconvenient wandering

Any excuse iVampire, any excuse.....

Ah TQ Bloody cancer. I’m so sorry it’s brain mets. I hope you are eligible for stereotactic radiotherapy and they can be zapped and F off.

I need very little persuading, and I don’t buy many other clothes (another justification)

DC are fairly sporty too, so it’s definitely a case of sorting laundry into lights, darks and tech

Thanks iVampire - that’s pretty much what my cancer nurse said. They might put me on a low dose of steroids if it stays raised. My lovely oncologist says I need to leave the worrying to her, but I am very bad at that!