Crack open the wine... it's CANCER SUPPORT THREAD 61!

[WhatWouldLeslieKnopeDo]

Some of us have been here a while and others have only just joined. If you're lurking, feel free to say hello. We are quite friendly really.

You are welcome to join us, whatever sort of cancer you have, or if you're waiting for tests to find out whether you have cancer or not (we hope not!)

Our previous thread is here. Do check it out if you're new as there's lots of useful information in the first few posts.

Best wishes to everyone who finds themselves here

I know I've only been here a short time but I'll really miss you lot. I'll definitely be lurking, to keep up with how you're all getting on (if that's okay). You're a lovely bunch

Leslie After having a vertical incision hysterectomy, oophorectomy, and a good look round by the surgeon, it took quite a bit of time for my bladder to get used to its new spacious quarters. Still not sure it's back where it used to be. But, basically, yes - urine retention. Felt as if I needed the loo, but a lot of wriggling to get a result. And then this one occasion when it felt as if it had seized up in a spasm. I googled, and there is such a thing. I tried diazepam because it reminded me of the sort of pain I had with sciatica. It really did hurt. At least, with cramp in your foot, you know to bend your toes back, but I couldn't think what to do with myself. So mega sympathies.

If it's any consolation, it seems to be quite unusual for ov ca to present with pain symptoms, which is why it's diagnosed late. If it is ovarian, you could have a cyst on a stalk which is twisting. That's agonising, but easy to sort out. Bad luck, tho'. As if you haven't got enough to deal with.

Happy and mars..wow such great news , I'm so pleased for you both.

Leslie sorry you're having a crap time of it lately ,I really hope they get to the bottom of it. Sending hugs your way.

besmirched sorry you're having to come on this thread and so sorry about your sister , I hope you find the support you need to deal with all this stress in your life .

wednesday is my results day..finally ..I can feel my nerves building but will keep thinking ..just worry about the facts ..no point worrying about anything else..not sure which pp posted that but it's very helpful

Mars and Happy great news .

Good luck for Wednesday ggirl - at least the wait is almost over.

Leslie any chance it could be surgical adhesions? - that's what they thought my symptoms were with this originally - apparently can be quite painful. Kidney pain is more in the back and hurt like hell (I'm the lucky owner of a packed in kidney too so speaking from experience!). Hope you get to the bottom of it soon and the pain and nausea ease off. I'll definitely get a new diagram but I did talk to my husband and he remembered more than I did so that's useful.

Trying to distract myself from waiting for results by organising house (I don't know why as last thing I'd do normally! could explain why it needs it). Would be more effective if I didn't keep having to stop due to feeling sick. Got through Lego avalanche at least so our feet will be safe. How did everyone else cope with the wait? I'm fine once I know as I can deal with it but not knowing is really hard.

Tayto I was working whilst undergoing my tests and it was a useful diversion for me.
Happy That is fantastic news. Congratulations.. We are happy to wave you goodbye
ggirl Fingers crossed for Wednesday

genie how did it go today?

Happyland yippee! What a relief :)

Penguins have you heard of quolls? They are rather lovely. Is it marsupials in particular that he is interested in, or all animals?

Thymeout that's exactly the problem with my bladder - too much space to flop about in! Same with my uterus and adexna. The spasm sounds very painful I'm not at all concerned about it being cancer, as that would've shown up on CT a few weeks ago. They gave me the diazepam because I have found that stretching my groin area helps with the pain - I was lying in bed with my legs stretched out sideways in the air! So they reckoned maybe some sort of groin muscle spasm.

ggirl I'm keeping my fingers crossed for you on Wednesday

Tayto adhesions was the original theory, but apparently it's too low down for that. I definitely don't think it's kidneys. Good work on the Lego! Staying busy definitely helps. And you might as well use the nervous energy for something productive :)

Thanks everyone for all the suggestions. I have had a much better day today. Only been sick once and managed to eat a small portion of lunch and dinner :)

A friend also reminded me today about a couple of charities that you might be interested in. They offer various treats for people with cancer:

Ellie's friends and Something to look forward to

Thanks Leslie - haven't heard of them and they do look lovely. It's all animals he loves but especially anything fluffy / cuddly looking, he's 11 but is very popular with 5 year old girls for his love of teddies and fluffy animals (used to take 15 teddies to school aged 10). He sleeps with a 4 foot panda and a 4 foot penguin Hope you continue to feel better tomorrow.

hurray to Happy and Mars - so happy, in the nicest possible way, to get to wave goodbye to you!
Thinking of ggirl and Tayto - waiting is so hard, just do the best you can to keep busy and distract yourself. I did tasks I'd been putting off for ages, sort of cursing to myself the whole time but it was satisfying in the end to get them done!
Leslie I'm really glad you were able to eat something today. But the pain continues ... what are next investigative steps, and other pain relief avenues to explore?
Thanks to all for asking about day 1 of radiation. I told the techs I was a bit nervous and they were unsurprised - apparently they hear it all the time - "fear of the unknown," they said. Blimey, I'm all about being afraid of the unknown anymore!

Congrats to those who are saying Good Bye to this thread.
@Leslie hope there's a good resolution to your mystery pains

Aw penguins he sounds lovely. Though I'm surprised there's any room for him in his bed with two giant animals

Thanks Dolly how are you?

genie I'm glad yesterday went OK and that the staff were supportive :) how many sessions are you having?

There aren't really any next steps as such. I'm trying to hold out until after chemo this week because I really don't want to delay again! Then I'll contact my nurse and ask about an ultrasound.

Oh leslie I'm sorry to hear you're still not feeling much better. I suppose the medics tend to think it's the cancer without considering more normal things. I hope you get some answers soon.

genie I hope your fears were calmed after your first rads session. It's boring and repetitive and it can get a bit sore but it's nothing to worry about. I dd have a bit of a melt down about two weeks in, I just suddenly felt very vulnerable lying there on that strange machine. They gave me a few moments to compose myself, the staff were largely very kind.

I've finally got a date for my surgery, it's two weeks today. It's going to be a different hospital but the same surgeon. My mind is now thinking about buying some anti wind preparation for afterwards as apparently that's very uncomfortable and an appropriate laxative. I need to have a conversation with the local chemist, very glamorous!

Great news for you both Happy and Mars - enjoy your celebrations. Thanks for your good wishes freddie - trying to just crack on and hope for the best!

Sorry you're still feeling so shit Leslie. It's difficult to stay chirpy when you don't get much of a reprieve from feeling crappy, isn't it. As you say, the sun is out and I hope you feel the love from afar, to provide a bit of comfort at least.
Love to the rest of you xx

Hope today was better Leslie. My DS sleeps under his 4 foot toys cuddling them, you can't see him just his arm. I did look for a 4 foot soft toy quoll for you so you could try too but they don't seem to make them that big, just little quolls.

Hi @Leslie thanks, I'm ok. Was having chest pains again but scan was not showing that anything is worse, so it's probably just post surgical .... was getting the fear again! Otherwise, not too bad. Hope you can get on with the chemo this time

Well I saw the surgeon this morning and it's fantastic news ! Benign tumour ...low grade dysplasia caught early so no changes to anything nasty. No follow up required.
I cried with relief and still can't stop.
Thanks so much for the wonderful support from all of you , especially Leslie xxx

Hope everyone is having a pleasant Wednesday.

What fabulous news ggirl! So pleased for you. I hope your recovery from the surgery continues well.

I'm just back from the consultant, who copped a feel of my rogue ovary from inside and out, which was nice . She's requested an MRI which hopefully should be reasonably definitive as to what's going on, and then will formulate A Plan based on the outcome. The appointment should be another 2-4 weeks.

Great news, ggirl!! So pleased for you.

Turn Did she say anything else? Mine started the consultation by saying, 'I'm not going to speculate before I've seen some scans', which effectively cut dead any questions from me before I'd even opened my mouth. She later casually remarked that it extended as far as a full-term pregnancy and, as I left the room, 'It might not even be gynaecological'.

I was on my GP's doorstep the next day for anti-anxiety pills....

With any luck, your MRI appointment might come through sooner. Does your hospital have a Gyne-oncologist? Mine was a local general hospital and fortunately I was transferred to a teaching hospital and never had to see her again till post-op monitoring.

mrsrhod I'm glad you've finally got a date. Good luck with the preparations!

nicky thank you. I feel very loved :) how are you faring this week?

Penguins he sounds like a little sweetheart :) I have a 12 foot pillow taking up most of my bed so no room for a giant quoll anyway!

Dolly I hope the pain eases soon, but good news about the scan

ggirl hooray! That's excellent news

Turn fingers crossed for The Plan, but sorry there's still a while to wait

No chemo tomorrow. The pain was bad again yesterday so had injections from the hospice nurses overnight. I'm going to have another syringe driver at home and hopefully that'll sort it, otherwise off to the hospice for symptom management.

So sorry to hear you still feel so bad Leslie, hope something works soon. A 12 foot pillow sounds good.

Got my biopsy / resection / hysterscopy on 13th at 4.30pm apparently a daycase, asked the kids if they would be fine alone for a few hours (11/12), both say yes and DS says I will do some cooking, I am getting a recipe and making pascade (mini pancakes). 😱 Immediately had visions of house burning down, he's only cooked (cakes) twice before with his sister and us. Thankfully she's very sensible and will ensure "cooking" is kept to the microwave.

Leslie so sorry the pain has returned and you're feeling understandably crap. Thinking of you. Doubly frustrating given that your tumours have remained stable - you'd think the rest of you would be stable too.

ggirl, mars and happy lovely to have some good news on here - makes a pleasant change. In the nicest possible way I hope you go away for good and never come back!

Nicky I have my scan on the 19th and will get the results on the 28th I think. The consultant was positive on Monday and said my profile is looking good and that I should be positive.

TQ that sounds reassuring. I am cautiously optimistic for you :)

Penguins thanks. Good that you've got a date for the procedure. And thank goodness DD will be there to prevent any cooking disasters

My syringe driver is up and running, and should have taken effect by bedtime tonight :)

Leslie hope your pain is under control now or soon, thinking of you.

More on the DD3 saga... quick recap: bad tonsilitis around a month ago, I bought her home from uni for 5 days to recuperate. Back for a week, then another cold / cough / flu. Dr sent her to hospital because of blood in urine. In MTU all day. I got there after she was discharged so couldn't talk to anyone. Repeat tests done week following - no feedback other than 'OK' in online feedback - she couldn't talk to anyone and I'm not sure she read the screen properly..

Beast from the east arrived - hospital in crisis. Today she got an email asking her for repeat tests as they've only just got her discharge papers & results. The Dr has also requested she attend a 'review' with him/her (previously she has only seen a nurse) within the next 2 weeks. Since when do doctors do 'reviews'? Am I worrying unnecessarily here?

TQ Not had tonsillitis but when I have had small operations doctors have done a review/meeting after so if she had an op it could well be standard. Maybe give hospital a call to see but its good they are seeing her to review everything.

Not sure why they would ask her to repeat tests but my bloods came back low but on the border in some cases and I have to repeat so it doesn't need to be anything major. Could also mean they lost the first lot, three of mine were lost and I had to repeat. Hopefully its nothing or something simple and treatable. Hope she's feeling better now.

Thanks Penguins No operation. Just hooked up to ecg all day as her heart was fast (no shit Sherlock... I never understand why the hospital insists on doing my BP before they cannulate me, even though I tell them it's absolutely the worst bit for me...). She's fine now I think. I guess we wait and see...