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.

Hello everyone, can I join you?

I'm so sorry to read some of these posts.

Just had my second round today, but first of EC. First round was Carbo/Pac (weekly Pac) but after a spectacular reaction to the Pac on the third week, they've changed my chemo to EC. Not sure if the side effects will be much different really, though I feel very snivelly and sneezy tonight, not sure if that's a thing? Had terrible constipation then diahorrea after the first round so I'm hoping that's not the case with this.

You are all so kind and give such thoughtful advice, although I'd rather not have the need to join this thread, it's lovely to be among such supportive people.

@digerd Crikey, that's an early start, especially when you're feeling rubbish. Hope you get a good nights sleep.

Ben sorry you find yourself here but welcome. Where is your cancer and how are you feeling overall? I hope this new regime is better for you.

I've seen the psychologist today and she has assessed me and come to the conclusion I have mild depression and severe anxiety. Now I'll have to go to the doctor to discuss medication. I feel totally overwhelmed by it all.

Hi everyone

I have lurked for a while as my cancer was diagnosed and treated last year (coming up to 1 year anniversary). I have/had (never sure what to write) tubular breast cancer which apparently is not too common. I had a lumpectomy with nodes removed then 20 sessions of radiotherapy. Physically I'm in better shape than mentally. I've now been told I've most likely got PTSD so it's off to the psychologist for me.

@noodles44 - my rads finished in October and I have days when i'm still a bit sore. The oncologist is not concerned about it but apparently it can take up to a year to settle down.

Hugs to everyone on here. Cancer is a such bastard thing.

@Dulcedelecherocks I feel ok really, bit tired but I was at the hospital from 8.30 to 5.30 sitting about so that always makes me tired. I just started with the sneezy/snivelly stuff an hour or two after I got home. I'm wondering if I'm losing the hairs in my nose. I'd rather it was that than anything else!

Mine was triple neg breast cancer. I had a lumpectomy in April but am now waiting for the results of the BRCA1/2 and PALS2 gene test and my oncologist said that, if it's a positive result, I might want to consider a double mastectomy in place of radiotherapy. Trying to get my head round that and wondering why I didn't have chemo first to shrink the tumour while we waited for the gene results. I have so many questions at the mo, I think I need to speak to someone face to face for some reassurance. There's probably really good reasons for the way things were done, I just don't know what they are yet.

Did you find speaking to the psychologist helpful? I've been offered a referral but wasn't sure if to take it up or not.

And you're right @dramaqueen, it really is an utter bastard.

Yes it definitely helped. Have been seeing her since diagnosis and not sure how I would have coped without it. I would recommend it if you've been offered it.
It sucks to have all these questions and you do need answers so I would push for that. I don't know anything about breast cancer but plenty of women here do and they might be able to help.

Just checking in to say hello to you all, including the understandably reluctant-to-be-joining newbies!

My scan on Friday went fine, and I had a brilliant weekend away which absolutely killed me. I won't get the results until June 12th, when my new consultant will have returned from holiday. So that's a good couple of weeks where I can pretend everything is absolutely fine.

@Dulcedelecherocks to be honest I'm worried I'd cry all the way through an appointment! Not because I'm feeling really depressed but I do feel really overwhelmed by everything right now. And it's thrown up a lot of 'stuff' from when my mum was ill with pancreatic cancer and I couldn't deal with at the time. But I think perhaps I should give it a go.

Crying is fine, Ben, honestly. I'm sure they've seen it all before. Please don't let that put you off- you might find that it does you the world of good.

Hi everyone. Sorry I haven’t been around for a while. I am sorry to see so many new names here and also to read that so many people are having a hard time. TQ and purple in particular.

We have a friend staying from SA and she brought a horrible cold bug with her from the plane. None of us realised until she woke up the morning after she arrived and was full of snot. DH and I both came down with it and I ended up in A&E at the weekend with suspected sepsis. Luckily it was just the cold symptoms but it was scary - mainly because I was at an unfamiliar hospital as we had been at a family do. Plus it was a busy bank holiday, the staff were overstretched etc etc. They messed up my bloods twice so it took them almost 12 hours to decided I didn’t have sepsis. I was so fed up at that point that I discharged myself and we came back to London.

Brassica if you want to do the LGFB session at Guy’s with someone then I think I am still on their waiting list

Sending lots of love to all xxx

@London
What is the LGFB? What a stressy time you had and 12 hours of even more stress on top. But thankfully you did not have Sepsis.
I was at a north London Hospital for my 8th lot of Rads on bank holiday Monday but for me was quite uneventful, thank goodness.
I should have Chemo but too old and frail to tolerate it so Rads only for me .

Ben
Been up almost 1.5 hours already as much to organise and brain and body on "go slow". Sitting about from 8.30--5.30 is awful. I would have been as stiff as a board.

wishing everyone as good a day as is possible.

Oh god, fingers crossed it has stayed at 2.9cm and the op can go ahead TQ

Thanks Purple that sounds exhausting for you and very upsetting. It is difficult when family are upset & they are bound to get upset at times when they see that you are so unwell. It is such a horrible illness.
I hope your oncologist is tracked down soon and that painful leg gets sorted asap (& you can go home)
My decorating is still full steam ahead, more finishing touches now though. I did the woodwork before half term as am getting new carpets soon as had a critical illness pay out, so trying to do a few nice things with i too. Am planning on taking the kids away for a couple of holidays too.

red I didn't find out immediately after the CT scan, the results went to my Oncologist who I then had an appointment with. I was fortunate as didn't have too long to wait after the CT for my appointment as they had squeezed me in for a cancellation CT a few days before a scheduled Oncologist appt & fortunately the results were there by then (I was told at the CT it would be 7-10 days) Good luck with the scans. The Cat gives you a warm sensation due to the contrast which makes you feel like you have wet yourself slightly (this is normal) I weirdly found the CT quite relaxing!

Have as good a day as possible. We are off to see Secret Life of Pets 2 today I think which I think I am more excited about than the kids

I'm sorry you still get discomfort following the lumpectomy/node clearance & rads drama thanks for sharing though as it is nice to know it is still normal for where I am in treatment now.

That sounds miserable London glad you are home (& feeling better)

I seem to be quite flat/down at the moment dulche good that you are getting referred and the tablets should hopefully help.

X

@digerd it’s Look Good Feel Better. They are a charity and provide health and beauty advice for people going through cancer treatment. I have been trying to get to one of their sessions for months but they are extremely popular!

Thanks for the kind words and also to you, noodle I hope you are ok today.

I will find out on Tuesday pm whether or not I can have the Stereotactic Radio Surgery, if not it will be whole brain RT.

I had my mask made today. I thought I might find it claustrophobic but it was fine. It started off with a lovely warm mesh and then they put the flippin' coolers on it.... I had a CT and an MRI for measurements.

I will tell the girls this weekend Dulce - I don't want to put it off any longer and there is now an A) and a B) plan in place, which will be reassuring.

Can I ask about steroids? TQ mentioned this on another thread and I’m so sleep deprived I wondered if I’d posted it.

I’m only on 20mg a day, which I thought was a low dose, but Oh My God - my DH came to bed at 1am last night and that was me wide awake until 4am (passive aggressively reading my iPad at 3am while he snored). I know sleep disruption is a side effect but I thought I’d escaped. I go down to 10mg tomorrow- will that improve it?

I think so. Are you taking them first thing in the morning?

Thanks BitofFun - yes, I have been.

Just nipping to say I'm sorry to see your latest news TQ and I hope all goes as well as it can telling your girls this weekend.
purple I was also sorry to read about the fistula and then the DVT. I'm sending you some positive vibes.
It's always sad to see new people on the thread and I hope you won't all be around for long.

Flippy I had lung cancer and throughout my tests, my calcium levels were very high. It was hyperparathyroidism related to a small gland called the parathyroid. I have an enlargement on one but they are almost never cancerous, and my levels have dropped again. It wasn't any major concern. I am also very deficient in Vit D. Good luck

6th of 12 weekly Paclitaxel infusions today. So half way through this intensive phase. They mentioned that my platelets are dropping but still OK today. I could really do without any delays to treatment as it is being paid for by insurance and I know they will refuse cover when the new annual policy starts later this summer. I have googled foods that can support platelet production, pomegranite, papaya, kale and spinach, so nothing outlandish and I will make sure to incklude those.

Has anyone had delays because of platelets? How long does it take for the count to go up? Is there anything else I can do to help this?

Best wishes to all who are having a rotten time right now and special best wishes for those waiting for results and tests. The waiting really is a special kind of horrible.

Well, it's been a strange day.
Had the CT this morning - just as you described it Noodles, it did feel like I had wet myself. I didn't find it relaxing however, as my anxiety levels were building all the time I was there - it's becoming more real. I was told that the report would take around a week, which was disappointing.
I got a call on the way home (2 hour journey) to confirm the diagnosis, which is what I was expecting. All of these expensive tests would not have been ordered if they weren't certain.
I was then told that a Consultant Radiologist had "had a look at my CT" and that the cancer appears to be localised. No sign of anything in my bones or lungs.
While they couldn't say for certain, it looks like this is fixable. I had a proper meltdown after coming off the phone, DP had to pull the car over.
At 3am today I was lying in bed trying to work out how to tell my boys bad news. I'm now allowing myself to hope that I won't have to.
Back down the road again tomorrow, as I got a call later I got home offering an MRI appointment for tomorrow.

Hi all

Bit of sleeplessness for me tonight thanks to steroids so am checking in at this hour!

meercat, you’re sure the insurance cover will disappear at renewal time? That’s awful. I don’t get how they could act so inhumanely before treatment is complete, although I know insurance doesn’t have a great reputation with short arms and deep pockets. I hope you can get through it all on a first attempt and meanwhile eating those foods sounds like a positive step you can do for yourself.

redspook, sorry you had such a lousy and emotional day yesterday. These tests one after the other and the delay to hearing back are really hard to get through when you fear the worst. You mentioned previously that you were also awaiting biopsy results - was that the call while you were driving back? The initial CT scan feedback sounds good anyway, hang on to that. The MRI will be to measure your tumour(s) for benchmarking progress later. I hope you get your treatment plan details sooner rather than later so you can begin to ready yourself.

London glad you are out of hospital and hopefully feeling a bit better. Your friend must feel awful for putting you there! Big payback needed for that further down the line! Thank you for the offer re the Look Good session - I’m booked for 9 July and on the cancellation list for 12 June.

Ben - firstly I like your name and secondly I have TNBC too - a couple of weeks ago I joined a Facebook group called Triple Negative Breast Cancer UK (TNBC) Support which is friendly, supportive and informative so you might want to join. There will be ladies on there who have had the mastectomy vs lumpectomy after gene testing thing. I’m due to see a genetic consultant too and been told a mastectomy might be better if I’m positive for the genes but then I went straight into chemo before anything else so not quite the same as you.

Glad you got some good news red about the CT. I think I was so shattered from lack of sleep preceding my CT, that is why I could have napped at that point! It really is a rollercoaster and the amount of tests/scans and appts at the start are nearly a full time job. It does calm down though and you just get into the swing of a new normal. It is also surprising how much better you feel when there is a plan in place too.

Secret Life of Pets 2 yesterday was great fun. The kids (& me) loved it!!!

Brassica, no they wont just pull the cover entirely but they will put up the premiums, quite probably to more than we can afford. My oncologist is lovely though and well aware of what the insurers are like. He has said he will do everything he can to get the Radiotherapy through in this insurance year and the intensive phase of chemo will finish in time as long as not too many delays. I would rather not have to switch to a new team or hospital if I can help it.

Redspook Having the diagnosis is always a shock even when you know it is coming. I think that having a meltdown is actually a healthy thing to do. I just went numb for 2 weeks which was stressful in its own nasty way. Great news that it looks like it is localised and fixable. All my fingers and toes crossed for you

Best weekend wishes for all of us here. Hoping for peaceful, pain free and positive times for all.

Thanks brassica noodles and meercat, it's good to feel that you're behind me.
Yes, the call was with the biopsy results. it would have been easy for them just to give the diagnosis, but they have taken the trouble to look at the CT so that I could receive some news which might be encouraging.
I now have to wait until after the MDT meeting on 10th June.
MRI took 45 minutes, I was able to remain still quite successfully (I'm usually a fidget) with some yoga breathing.
Does anyone have any short online yoga videos which help to stay calm and stop the intrusive thoughts?