Cancer support 67. Waiting for tests, just diagnosed or needing a handhold through treatment

[purpleunicorns]

Welcome to the 67th cancer support thread, the previous one can be found here.

If you're looking for advice, have any questions or just need some support while you're waiting for test results or treatment to start then pull up a seat and make yourself comfortable. You can rant, cry or scream if you need to but we do have some laughs along the way

No questions are silly so please don't feel embarrassed about anything you want to post. The chances are at least one of us has been there at some point!

There's a whole variety of people with different cancers at different stages and nobody goes unanswered, the people on here are amazing (even if I do say so myself ) and they have been a massive support to me over the last year.

If you have a friend or family member with cancer then there's a support thread for you here with lots of practical advice to help you support your loved ones

At the beginning of each thread we give a brief summary of who we are and what we have to save us trailing back through old threads

Here's mine: Im 35 and was diagnosed last October with cervical cancer, despite chemo and radiotherapy I found out in June that it had spread and I'm now having palliative chemo to keep me stable. A scan a few weeks ago showed that there was no new growth after 4 lots of chemo. 2 more chemos to go for me so I'm hoping it stays that way

Sorry to hear that Cally awful timing. No need to apologise for your language. I think you've summed up how a lot of us feel, at least some of the time! My hand is here for you to hold as long as you need it. I hope the painkillers help. And the Moët

I've wrapped/bagged up my Christmas presents. I had a bit of a wobble writing the tags and thinking that this is the last time. But I'm trying not to think too much about that. I'm now covered in glitter! but feeling quite smug as I was able to reuse paper and bags from gifts I have received.

Aimlessly you've been quiet lately. I hope you're OK and just busy in the run-up to Christmas

Thank you Leslie

Sounds to me like you have every right to wallow in your glittery smugness. You must be on auto pilot with everything...Here I'll share my and with you.

We seriously need icons for bubbly...

Right, I'm sorry to pester you with a query when there's so many of you going through so much. I've read most of this thread and take my hat off to you all, I know just waiting for my first appt when it's probably nothing is small fry compared to what you're all going through.

However I'm stressed and can't talk to anyone in real life.

The physio found this "thing" in my ankle on ultrasound last week, said it wasn't a liquid cyst, wasn't calcified tissue and I swear he said it had a blood supply. Told me to see my gp and that physio wouldn't help as my ankle pain is caused by this thing pushing my tendon out of place.

Gp takes it really seriously and refers me on a 2 week wait, tells me to expect an mri and possibly a biopsy. I then get a letter the neext day arranging for a telephone appt tomorrow.

Then yesterday I get a call from gp receptionist saying they've cancelled the appt as consultant refuses to proceed without a report from the physio. I'd taken photos of the ultrasound screen and shown them to my gp and told him what the physio had said.

So I ring physio in a flap and get the practice owner as the physio who scanned me isn't in. He said he will email a report to the gp but says he's very suprised I was referred on a 2 week wait, that nothing was seen that suggests it's sinister, that it doesn't have a blood supply and that I should come back for more physio in the new year.

Anyway report has gone to the gp and I now have a new phone appt with the consultant on xmas eve. But report says no blood supply to this thing and I'm adamant he said there was. I'm guessing this makes a big difference as it's not going to be cancerous without a blood supply (think that's right). Obviously I'm happy if that's right but I'm worried because first bloke said there was a blood supply.

What if the consultant just says no blood supply so I don't need an mri? And I think this report might be wrong. Physio won't have it that the report might be wrong, he's adamant it's right but says he hasn't seen the pictures himself and isn't a sonographer anyway. Other physio is off.

Hopefully it's nothing serious Addle
*
Leslie* that's fantastic news about your PIP! So pleased yours and TQs are finally sorted.

Oh Pandora I know how scary this must be for you but at least you have a date for it now and once it's over you'll feel so much better for it

I'm being moved to the surgical ward as the cancer is pushing on my bowel making it difficult for anything to get past. They're coming to stick a tube up my nose to drain my stomach, I absolutely hate getting these put in

Cally I have ovarian cancer. Did your GP tell you you had OC? Or a consultant? Your GP cannot diagnose you because he/she won't have all the info. You need to have it confirmed by your oncologist / consultant. Have you had a CT scan? (sorry, can't remember)

You say your CA125 is raised - what level? I'm sure you know that 35 is 'normal' but there are of course many variations on normal. Also a raised CA125 does NOT necessarily mean OC. It's a marker, yes. But it can also mean other things too.

You say you're in pain. Where? Pain is not 'normal' with oc. Easier said than done, I know, but try not to panic. It could still be something else.

purple you poor thing. I hope it goes in smoothly no wonder you feel so awful though. I hope they can get it under control soon.

Nico sorry I don't really have any useful experience. I suppose you just have to wait and see if they agree to an MRI, and be ready to push for further investigation if they dismiss you. It's terrible timing with Christmas

Cally thanks, but I don't drink I do eat though...

I ate a whole net of chocolate coins earlier

Okay back to being scared witless having spoken to the breast nurse the clinic.

Who read out the notes from the oncologist mentioning how well I'd taken the news?!?

I've to go in on 24th to discuss surgical options but likelihood of mastectomy ASAP and due to my BMI and depending on state of my lungs probably no reconstruction.

At this stage am past caring, I just want to know wtf is going on.

Naturally it's all joy in the house as I shout at poor DH for not knowing how to cook chicken because 'when I'm gone you'll need to feed the f*cking kids'

I'll admit that wasn't my finest moment.....

Oh sweetheart no wonder you're scared not what you needed from the nurse. It's good they're planning on doing the surgery quickly so you can get the bugger out. I'm sure your DH understands. It's a hideous time for you all.

Sorry I mean it's understandable you're scared because of the way they're handling this (badly!)

Copious amounts of the drink of your choice are required here keepcalm. There is absolutely nothing worse than the unknown. It's just awful. The nurse may well have just meant the cancellation of your treatment this week. All of us have had treatment delayed on many occasions for various reasons - for me, not healing after my op last year, current chemo not working.... A few weeks here and there don't make any difference in the long term. Holding your hand.

Purple sorry you're having so much trouble. I hesitate to use the 'b' word (brave) but you are.

Leslie only 1 net? now that is pathetic!

Keepcalm this is a pile of awfulness. The oncologist could have meant anything but of course it’s worried you and it shouldyhave been read out.

Shouting at DH totally understandable and he won’t be bothered at all I’m sure.

Ranout I'm really intrigued how they know all your nodes are clear before surgery? And Mrs how do you know all of yours have to go??

I'm finally feeling a bit more myself today thankfully. Kids have broken up for crimbo and I only have one more day at work. Yippee.

Oh Keepcalm I'm sure your DH understands, and if he doesn't you just let us know and we'll come and sort him out for you massive hugs for you

Ah posted too soon. Thanks TQ but I'm not feeling it 3 attempts to get the tube up my nose and still no success. Looks like I'll be having surgery to move my stoma so it bypasses the blockage in the morning. Really hoping that means I can recover over the weekend then spend what's probably going to be my last Xmas with my family

purple. You are having an awful time of it. I really hope they can sort the blockage out so you can get home.

Keep Calm. I’ve been on a short fuse with my DH at times. We have a lot to cope with mentally and of course something that wouldn’t bother us normally might tip us over the edge a bit more on a bad day.

KBG - oncologist and Surgeon have both said they all need to be removed so I’ve accepted that. I do totally trust them to do the right thing for my case/cancer.

My thoughts are with everyone having a tough time at the moment. I’m not normally a huggy type person but would like to hug you all!

I’m awake due to the steroids I think. My husband’s away tonight on his Christmas do so I’m alone in the house. He used to work overseas quite a lot so I was fine being in the house on my own but now it feels a bit strange.

Xx

purple this is totally shit. I hope they can get the surgery done quickly and get you home for Christmas.

Waving to everyone else.

That is awful purple - I guess at least they have a solution which will enable you to get home for Christmas with your family hopefully. I second the use of the b word. You are having such an awful time of it (& I feel like a bit of a drama llama now regarding my op nerves!!)
I hope the op goes well

keepcalm totally understandable reaction to your DH not cooking the chicken correctly under the circumstances (& I think I would have said similar too!) Your team are not really handling this well at all and seem to fail to realise how a throw away comment can panic us. I hope you can speak to someone today and get some clarification so you can relax a wee bit.

Hello & waves to all, just about to have a pancake making marathon before the nurse arrives & hoping my arm will not hinder me too much. I am still attached to my drain (100ml for last 24 hours, so expect it will stay over the weekend)

X

Enjoy your pancakes noodles and good luck with the nurse

I've been feeling really down this morning. The whole last Christmas thing is difficult. But I've just received this beautiful bouquet from MNHQ!

Leslie your post with the flowers has made me cry.

sorry!

Just popping in to say sad but nice Leslie - I never knew MNHQ did such things .

another here hoping purple is feeling more comfortable soon and soon back home

ex gingeroots ex violetqueen

Just seen Consultant. I will be having mastectomy plus all lymph nodes removed on left side. Although the chemo has done its job reducing the size of the lump he said “disease was quite widespread” so mastectomy and lymph node removal is the best way forward for me I think.

Just got to process the news now and get over chemo side effects before surgery on 14/01.

Leslie - lovely flowers. Christmas is difficult. Hope you enjoy your visit from friend

I was diagnosed with breast cancer Nov 14.
Leslie and all the others were always there when needed.

I do have a little read of this thread from time to time to see how everyone is doing.

The flowers for Leslie from Mumsnet are lovely,what a very thoughtful thing to do.But I am sorry to read your news Leslie xx

Thinking of you all Lacies