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

Oh and namechange it sounds like if you have the option to ease up a bit on work, why the hell not - I'm still trying to work full time but I'm finding it exhausting mentally and physically. Go out for coffee, movies in the daytime, pub lunch when the weather improves, get out and visit gardens in the spring...,

Pandora I woke up in itu in a different hospital after reacting to the blue dye in my surgery, I'm lucky to be here. But I think what I'm trying to say is these medical teams are amazing and they obviously know what they're doing with regard to your situation. My surgeon even managed to finish the op before whisking me away in an ambulance.

This was in May and then I had further surgery in November and was quite nervous but they were patient and kind with me on the day - talk to your team and hopefully they will reassure you; a big nod to the comment about taking the positive: they will all be focussed on you entirely xx

Pandora I'm now thinking I've been totally insensitive to your situation with my previous post. I do apologise.

Good evening all.
I had my referral appointment today with a gyno. She spoke to me and basically repeated what other doctors have already said, she then examined me internally and asked to take a biopsy which I agreed too. However, she couldn't get to where she needed to take it from as I was too swollen from a previous examination a few weeks ago so I'm not going to be put to sleep for them to do it otherwise it will be too painful. They are also sending me for more blood tests ca 19 and cea and for a MRI scan. I am absolutely terrified and I can't stop thinking about the worst case scenario. I feel like as soon as I tell myself it is something else - less serious - it's like the doctors take that away from me and point me back into the direction of cancer.

namechange sorry, I wrote based on my perspective of if I could cut back on hours as I was finding my job quite solitary prior to diagnosis and it had been a source of stress at times and being signed off has made me be able to focus on my treatment etc. The infection risk was higher in my work and for me to cut back or not work would be a nice dilemma if finances were not a concern.
I'm sorry as I think I just wrote without thinking and realise that it probably isn't a nice dilemma for you, hence why you posted. If you love your job it must be a tough decision & it is another thing that cancer has/is taking.
That said though, if you can cut back and do activities that make you feel well/keep you as healthy as possible, I am sure you would fill your time and potentially meet a few new friends too.
It can leave you feeling like you don't have enough time to get the work done when you are part time (& for me I end up doing odd bits s & pieces on days off as it is easier) if you were contracting you could schedule the appropriate time easier and reduce the work gradually too so it was not a shock to the system...

x

Oh noodles I wasn’t the least bit offended. It is a nice dilemma to have. I know how badly many people with cancer are treated in the workplace, and how completely incompatible some jobs are with treatment etc. So I knew exactly what you meant and I know exactly how lucky I am to have a choice in this.

It’s a really good point about having time to meet new people. I would really like that.

Chicken hello and welcome. Waiting is awful we will all agree with that and it sounds like you've had a rough few weeks. I couldn't quite follow the dates of your scans from your post, but fingers crossed for you xx

I've got sepsis again and a bowel blockage. They've taken me off my morphine as it's not good for my kidneys so I've spent all night in agony while they try to figure out what painkiller works. Antisickness aren't making the slightest bit of difference as I can't stop throwing up just waiting for a scan and then I'll find out what's happening

Oh purple, you poor thing. I hope they figure it out very soon

How utterly grim purple I hope they can get some pain relief sorted soon. Good luck with the scan.

Chicken do you have a date for the MRI? I hope they get to the bottom of it quickly

KeepCalm I hope the oncologist can speed things up!

Tahiti fingers crossed for your PET scan. Sorry to hear about the pain

I have no useful advice about the work situation Namechange. I do struggle a bit as I feel my life has no real purpose (no job, no children etc.). But I wouldn't be able to work now anyway. People always ask me what I do with my time I find it really annoying (not you!) I do watch a lot of telly and crochet/knit.

I've just been out for breakfast, which was rather nice. Though three different customers had birthday cakes while we were there, complete with candles. My mum was getting very twitchy!

My back is starting to ache now so I've retreated to the sofa with my heat pad.

Oh purple so sorry to hear you're feeling so rough - I hope they get you sorted and feeling ship shape again soon

Congrats on getting out for brekkie Leslie! Hope you managed something yummy to get your strength back up as soon as possible!

to everyone else feeling grim.
Am just waiting for a review by the surgeon - have been having some pain in the area around where my liver is so hoping this is just adhesions - this waiting room is like a massive Petrie dish of coughing people

Good luck addle

Oh no purple. hope they manage to sort you out with some pain relief this morning. Don't like to hear of you having such an awful night.

A lot to catch up on but just wanted to mention that I have followed some of the suggestions re the lymph node removal. I have bought extra long cables for phone/ipad. They will actually be quite useful at home anyway. Also bought the drain dollies bag just in case they don't supply one at the hospital (like to be prepared!).

Noodles - thanks for the offer of the cushion but don't want to put you to the trouble of posting. Could you possibly post a picture and dimensions and I will see if I can get something similar online? I can ask the BCN at my hospital as well.

Name changed - not sure what to suggest with regard to your work issue. It sound like you actually enjoy your job so might be good for you to keep a hand in part time or locum work? I do/did contract work in Banking/IT and have grown to hate it so it was not dilemma for me to stop and I will not go back to it. Fortunately, my DH works so we are ok financially although I do recognise that now I am not putting anything back into the pot so to speak which I do occasionally feel a bit bad about but not that bad! I have worked since graduation in my early 20's, and am now in my early 50's. I have had the odd break between contracts but then you tend to be worrying where the next one is coming from. Feel like I've done my bit now. My husband enjoys his job and says he doesn't want go give up ever.

Seeing Consultant tomorrow so I think I will know tomorrow which op I will be having (lumpectomy or mastectomy). All lymph nodes on left side will be going whichever. Just waiting for injections to start today and side effects to kick in tomorrow. Think I might take some co-codamol before consultant appointment as he will probably want to examine me and the joint pain may have started by tomorrow afternoon

Waves and to everyone

Name changed. I've always been one of life's potterers really and have always enjoyed my own company. My DH couldn't do it. He gets very twitchy if he doesn't have somewhere to go to and something to do even on days off whereas I am quite happy just pottering about the house. This has actually been quite a useful skill/attitude to have whilst getting through seven rounds of 3 weekly chemo. It wouldn't be for everyone. I think the crafting stuff does look lovely to do so I might start to look into doing something like that myself.

Mrstraveller there are charities that provide the pillows :) if you Google you should be able to find one.

Thanks Leslie

Found a site with pattern where you can make your own. Might be something my mum could do. She’s good at sewing!

She would probably like that as a way to help :) plus then you can choose the colour/pattern

Hello everyone I've caught up with the thread.
@purpleunicorns as @WhatWouldLeslieKnopeDo said bloody grim. I really hope they have you sorted by now.
@WhatWouldLeslieKnopeDo brekkie out sounds great. When I have my op my DH is going to be off so I may get him to take me out for brekkie!
@Mrstraveller My mums made me one of the pillows I believe, she's visiting this afternoon for a few days so if she brings it I'll ask her if she has a pattern, she also made me picc line covers! I'm currrently rocking a black lace one!
@Mrstraveller So far I've been told mine hasn't spread to my lymph nodes. I'm going for a mastectomy no reconstruction. I've just spoken to my cancer nurse and I asked about drains and she said the surgeon I'm having for a mastectomy doesn't usually use drains for that op. It may be worth asking if you'll need a drain bag? I also asked about clothing - easy to get on! And sleep! She said they recommend you sleep on your back while you recover!
I saw my oncologist today she's fab it was as I expected crack on with the last chemo on the 27th then we'll discuss medication after surgery. She gave me a massive hug and kiss when I left! Oh and for all if you with the white blood count injections they moved me from one a day for 7 days to just one injection and it made a huge difference to my aches.
Hope everyone has a restful afternoon.

Hello @Chickenwings85 sorry to find you here and hope you won't be here long but you're very welcome for as long as you need

Trying to finish wrapping Santa presents before kids come home BUT

Oncologist confirms that the 28th is okay for the scan.

Have thanked her for scaring the fucking bejesus out of me.

Breast clinic want to see me at midday on 24th Dec for some reason though?!???

That’s another phone call.....

Will catch up properly later

ranout definitely do it. We deserve a few little treats! I'm glad your appointment went well. TQ and I are also starting our chemo tablets on 27th so we can all be chemo buddies! I'm glad the one-off injection worked better for you too. Your mum sounds great.

KeepCalm sorry that they panicked you when it's not quite as urgent as they made out. Did she apologise?! Good luck with the breast clinic

ranout

I think if it ends up being mastectomy I think like you I will not have reconstruction. Think I asked you about your reasons previously and they kind of chimed with my own thoughts

Xx

Thanks for the links, will have a look

Thanks namechange - that is what I meant, but didn't think it sounded that way when I reread it!

purple I hope they have found a pain med for you that works and your pain is under control again. The sepsis & blocked bowel is just what you don't need.

Breakfast out sounds good Leslie I bet your Mum was twitchy with all those candles!

Waves & hello to everyone

HI It's me...I'm back.

Fucking twatty fucking cuntarsed bollocks. I apologise for the language but fucking seriously.

So GP phoned earlier...referring me again under the 2 week rule as my CA125 levels are still raised. Yip ...that's just what I need four days before Christmas. I know it's not just me I know that there's loads of people out there this is happening to.

When I was last on here a month ago when I ended up in hospital...the surgeon reckoned that I had diverticulitis...3 days in hospital, hospital cancelled my gyny referral, 2 weeks on antibiotics and symptoms came back with a vengeance. Been to the out of hours twice...blood in urine still, slight temp, lower back pain.

Have had to wait a whole month to have my CA125 levels checked again...and today I get the call from my GP telling me that my levels are still raised, no infection, not diverticulitis possible ovarian cancer.

Am just in fucking shock...4 whole months I have been given the runaround.

So hear I am again waiting for the phone call and appointment.

Am trying to put the Christmas tree up...with a meowing glitter covered cat...still have every gift I have bought to wrap...haven't thought about food. DD1 is arriving Saturday evening, DD2 lives just around the corner...DP and I have decided not to tell them anything until we know ourselves.

I'm not sleeping due to the fact I'm in pain and need to get up to pee through the night. Not eating much either but the biggest thing is that I'm just absolutely exhausted all of the time.

So I may need a bit of a hand hold whilst trying to keep it all together in RL.

Oh and GP advised taking naproxen and paracetamol...can I wash them down with Moet.

OMG...epic or what...sorry.