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Cancer support thread 91 - don’t borrow tomorrow’s worries

991 replies

LemonDrizzle10 · 27/10/2023 07:39

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KentishMama · 19/12/2023 16:18

@lucysmam It's just ridiculous, isn't it? I've got to travel about 2.5h each way for each appointment, and I still manage to be on time, but the pointless phone call I had yesterday was several hours late. And similarly pointless to yours, by the sound of it.

I'm worried about this Cerebro-spinal Fluid leak situation. I've already had a lumbar drain AND a repair surgery, and it's still leaking. I keep reading that these leaks can close on their own with bed rest, usually within 7-10 days, but it's been 7 days since the repair surgery now, and it's definitely still leaking... The nurse was really unclear on next steps. "If it gets worse come to A&E" - but what does worse mean? I'm guessing if I contract meningitis, because that's the big risk here?

Saw the GP today. No guidance there. But he prescribed some stronger pain killers, which made me very happy, at least until we talked to 3 pharmacies and none can get them until tomorrow PM. So I feel like I'm being teased with better pain relief... but it's not quite within reach.

Anxious post today, sorry. This recovery business is very hard going.

@Tilllly It might be worth asking your chemo team what their cutoff for neutrophils is. Remind me, do you get to inject yourself with the delightful bone marrow stimulating stuff? Filgastrim or Lipegfilgastrim? That really helped my neuts, but the bone pain was not fun.

Tilllly · 19/12/2023 16:51

@KentishMama
No not at all
But oncologist rang and it's full steam ahead tomorrow

KentishMama · 19/12/2023 16:53

That's good news @Tilllly , another one out of the way! Will be sending good vibes tomorrow.

SewingBees · 19/12/2023 17:40

@KentishMama Sympathy from me. Any chance of you calling your surgeon's secretary and reporting the ongoing leak to get an answer about what you need to do?

Will keep my fingers crossed for you on the pain relief side of things.

Tilllly · 19/12/2023 23:52

Hello steroids...

Am wondering if now is a good time to clean out the attic

Obviously too dark to do the garage

Must
Stay
In
Bed

TwigTheWonderKid · 20/12/2023 00:48

Tilllly · 19/12/2023 23:52

Hello steroids...

Am wondering if now is a good time to clean out the attic

Obviously too dark to do the garage

Must
Stay
In
Bed

I'm currently in bed with a massive tub of Twiglets. The cat wants to share them. That will not be happening. I need ALL the Twiglets..

Tilllly · 20/12/2023 01:41

I could just eat twists

Tilllly · 20/12/2023 01:42

Twists...

Twiglets

Unex · 20/12/2023 07:13

Hi All
Im currently waiting for appointment with urologist (tomorrow).
Also under gynaecology oncologist (lead clinician).
Waiting for hysterectomy and removal of kidney.
I've now got soreness/ heaviness under left arm/ left breast.
Who do I contact please?
GP (never see the same one twice)
Gynaecology oncology (only really interested in gynaecology issues and never really know about kidney questions)
Urologist tomorrow
Thanks x

Unex · 20/12/2023 07:17

Also mindlessly scrolling this thread looking for some kind of answers or at least others who can help me.
Feeling a bit lost and despondent.....
And now I'm thinking about alpaca's doing the hokey-cokeXmas Smile

TopOfTheCliff · 20/12/2023 07:46

I’m up because the only Christmas Sainsbury delivery slot I could get was 7.30am today. @Tilllly remember it’s the steroids making you do it. You don’t want to come home feeling lousy and find half an attic’s worth of crap in the front hall. Stay in bed! Good luck today. May your veins be prominent and your side effects unnoticeable.
@Unex its probably something harmless but an econsult with the GP is probably the way to go. New thing, new referral to breast clinic if it hasn’t disappeared in a week would be my view as an ex GP. The others will just fob you off as not their area of the body. Good luck and here’s some alpacas thinking about doing the Hokey Cokey for you.

Cancer support thread 91 - don’t borrow tomorrow’s worries
Unex · 20/12/2023 07:59

@TopOfTheCliff
Thanks
Should I wait a week before seeing GP

And thanks for the alpaca's
Are they yours ?

TopOfTheCliff · 20/12/2023 08:10

@Unex as everything takes so long I would start the process now as it may be a few days to get seen/ heard. Have you found any lump or skin changes or is it just painful? I get such a range of mysterious sore spots I think it is the nerve endings grumbling after chemotherapy. They seem to go away again. If it does you can always cancel the process.

The alpaca farm is about five miles away outside Totnes. I wouldn’t want the responsibility as they are very valuable I believe.

Unex · 20/12/2023 08:12

Thank you top. I'll book an appointment.

Tilllly · 20/12/2023 08:13

Message received and understood @TopOfTheCliff

@Unex
I second tops advice. I am having chemo for lung cancer at the moment but had breast cancer in 2021. I was getting pains just underneath my breast last week, and immediately got sent for a mammogram via my GP. Absolutely clear, just some muscle pain From either the chemo or coughing

Ring this morning, you don't want to be worrying about this

Florabritannica · 20/12/2023 10:01

Everything is better with alpacas

KentishMama · 20/12/2023 11:49

@Unex I would also take this to the GP and ask for a breast clinic referral. Hopefully it's nothing!

My CSF leak is still leaking, and I've got hold of the consultant, who's planning to admit me again. Just waiting for a call back. Also my blood tests from yesterday were terrible, the CRP infection marker has more than doubled since Friday (and it was already very high then). So I've packed a bag and I'm ready to be driven back to horrible Kings, once I get the call. I could cry my eyes out, but it's no use :(

Slitheringheights · 20/12/2023 12:46

Hi all. Had my operation for my colon cancer on august 19th, all taken out. Had to get chemo for unwanted cells. Chemo finishes on the 29 th December. Got a letter in this morning for an outpatient appointment with the surgeon who originally done the operation for the 15th January.,. Is this normal? She did say she would see me with all my X-rays and info after I had my operation. Also got an appointment with my oncologist the week before. All these appointments fill me with dread 😟 thanks you

Slitheringheights · 20/12/2023 14:06

I take it it’s just a 6 month follow on appointment, talking about my tumour, size. Follow colonoscopy? Not spoke about any of these things yet. Only my chemo plan with oncologist. Not had any ct scans since. Apart from problems unrelated to thyroid. Not related at all.

Silkiefloof · 20/12/2023 15:40

Woolly hug thread has just gone up for Mowly77 who was a regular on the cancer threads and leaves a 5 year old daughter. Sending love to everyone.

https://www.mumsnet.com/talk/_chat/4967140-woolly-hugs-sad-news-we-are-afraid-making-a-blanket-for-lovely-mowly77s-family?reply=131587729

KentishMama · 20/12/2023 19:31

Thank you for everything you've done to help organise the woolly hug @Silkiefloof

HohiyiKozbevi · 20/12/2023 20:20

Hi @Slitheringheights and thanks for the update. Sorry I can't really answer any of your questions, but I can guess the appointments are just routine to keep monitoring you and keep track of how you are doing. They will want to keep a very close eye during the first year after and then a close-but-a-bit-less-close eye after that. I don't think you should worry.

It feels like there's not many fellow Colon people on this thread. I am a few months behind you in all this. I'm having some pre-surgery Chemo and won't even find out when my surgery will be till the end of January. How did your surgery go in terms of recovery time? I am very nervous about the aftermath of surgery and how long it might be before life feels anything like normal again.

Slitheringheights · 20/12/2023 21:34

HohiyiKozbevi · Today 20:20
thank you for your reply. Had a follow on appointment from a thyroid scan I had 8 weeks ago. Told I had a mass on my heart? They don’t know what it is. I know heart cancer is very rare. They said it’s not a new thing and totally unrelated to the colon cancer. I have to meet a doctor In feb to discuss a biopsy, but i feel like I just want it to be monitored. I’m totally shiting myself now and feel sick. I’m just getting over my colon cancer and chemo. I just want to run away

Slitheringheights · 20/12/2023 21:35

the doctor mentioned something about my heavy periods and could be related to that. Hot sweats.

Tilllly · 20/12/2023 22:46

@Slitheringheights

If it was something to worry about, it would be a lot sooner