Cancer support thread 63 for a handhold or advice and anything in between

[purpleunicorns]

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

Thanks Leslie what with nausea, constipation immediately followed by dire rear today, the PICC line felt like insult to injury this afternoon! I am completely paranoid one of my daughters will catch it if they forget and jump at me. My arm is aching and feels really heavy, so off to bed soon with some ibuprofen.

I hope you manage to get a decent rest purple in hospital tonight.

Waves to everyone

Sleep well noodles vein pain is nasty. If you can bear it in this weather you could try a hot water bottle or wheat bag on your arm. Do you have a tubigrip cover for it so that it's not dangling about? You can buy patterned ones and stuff if you fancy it, but bog standard tubigrip does the job just fine :)

purple ouch. You might be allowed a portacath as you're having ongoing treatment. I love mine! Good news about the PIP. I hope you get to speak to the doctor soon so you know what's going on. And I hope you manage to get some sleep

Hello, mind if I join you?

I’ve had a series of colonoscopies in the last 18 months, second of four was a complicated polypectomy and no.4 found a tumour. It’s been biopsied and I had an urgent CT scan on Saturday just gone, apparently there’ll be an MDT meeting this week (nobody has told me when) and then I’ll be called back in to see a surgeon. Five days now of waiting for my phone to ring and nada, is this normal?!

The endoscopist told me it was serious and aggressive so that was nice 🙄 I was alone and high as a kite on fentanyl when he told me that.

Urgh, brain keeps racing off playing out scenarios - I’m using meditation to try and calm it.

Anyway, hello 🙂

Hi tso and sorry you find yourself in here. There's a few of us with colon cancer so at least we will be able to support you.
The waiting is the worst bit I promise. Once you know for sure, you get a treatment plan and feel like your doing something so it does become easier.
My story was different as I had emergency surgery after being taken to A&E with suspected gallstones. I vaguely remember a doctor coming to me with a drawing of my colon saying it was blocked and could be a tumor so they had to open me up.
I suspect once it's confirmed what it is and how big you'll have one of two options - you'll either have surgery first to remove it and then chemo / radio, or they might give you those first to shrink the tumour before surgery.
Leslie is out in house expert on all things colon. Me, addle, tayto are just beginners, and have just finished 4 rounds of chemo.
Good luck x

Hi tsonlyme but sorry you're here meditation is a good way to cope with it all. Hopefully you'll hear from them soon. You might be able to find out when their MDT meeting is by Googling the hospital name and "colorectal MDT". I found the list of everyone in the MDT for my hospital that way :)

Good morning Dulce :)

Good morning. What's an MDT meeting?

Multi-disciplinary team. It's a bunch of specialists (oncologists, surgeons, radiologists, nurses etc.) involved in treating a specific cancer type. They meet, usually weekly, to discuss cases and decide on treatment plans.

Hi! Thanks for the info. I’m a medical secretary in a GP surgery so I know how these things go. I had already googled MDT at my hospital but could only find general info about what it was which I already knew, I’ll try the more specific colorectal google now. I haven’t googled anything else regarding the issue because I’m too frickin scared 😩

Welcome, tsonlyme.

Hope everyone else slept okay and can I be cheeky and suggest we all allow ourself a treat today? An afternoon film, takeaway dinner, long bubble bath etc. I think we'd allow need to look after ourselves.

Ooh Year that’s a great idea! I’m currently waiting for some furniture to be delivered and very sweaty and unattractive so that sounds good!!!

Leslie that’s such a sneaky idea I didn’t realise you could find out stuff about the MDT that way! Dulce it’s when they get the surgeons and pictures and oncologists all together to look at everything and make a plan for what to do for each patient.

Thought it was less hot today but seems the stickiness rating is high high!!! Nausea is irritating but not too bad and sleepiness has gone down a notch so I’m hoping after the weekend to get properly stuck in to the house moving!

to you all - what are your treats going to be? I’m not sure yet...

Hi tsonly. I know this is scary but once you know what's happening you'll feel much better. And if you do have chemo it works much better if your cancer is fast growing as it sucks the chemo up faster which kills it faster if that makes any sense
DO NOT google. Honestly it'll only make you feel worse, just remember pretty much everything cancer related on google is out of date anyway

Year what a lovely idea. I think my treat will be sneaking out of the hospital to sit on a bench in the sun for a bit

Glad your feeling better Addle. Good luck with house moving in this heat ☀️

Oh purple isn’t it weird how our threshold for treats has changed in the last few years - hugs and hope you get a lovely cool breeze with your trip outside!

Sorry lyme totally forgot to say welcome and - I agree tho don’t google. It won’t change anything and it’s probably better just to think about what questions you have and make sure you’ve got someone supportive lined up when you know when appointment is

purple how are you this morning? I hope you got some sleep and won't woken too early for obs! And hopefully you'll get out in the sunshine later :)

addle I'm glad you're feeling a little better. Onwards and upwards. Good luck with the house moving

29°C here already - going up to 33 later apparently! Bleurgh I will look like this by the afternoon.

I'm much better thanks, although really constipated again. Just waiting for the doctor to prescribe me an enema I'm really hoping the operation sorts this all out. I'm so bloated and uncomfortable

Leslie how long did they keep you in when you had your stoma fitted? I'm a bit worried about them sending me home quickly and I won't have a clue what to do with it

Only 25°c here so far. It's definitely getting hotter though, I feel sorry for all the nurses having to wear their uniforms today

Oh you poor thing that sounds very uncomfortable.

I was in for about six days in the end. They were originally planning to discharge me after three but then I took a bit of a turn and was quite unwell for a few days.

They won't send you home before you're ready. After both of my stoma surgeries the surgeon has left it to the stoma nurses to decide when I was ready to be discharged (once I was recovered enough physically).

You can do this :)

Thanks purpleunicorns I have no intention of googling the cancer but I couldn’t find out any more re the colorectal MDT meetings, I don’t even know which dept I’ve been handed over to so I don’t know who to call - presumably not endoscopy. Oncology? General surgical? Gahhhh

I sort of knew that about aggressive tumours and chemo as my neighbour/friend has recently come out of the other side of breast cancer and told me the same.

What’s really awful alongside not having info atm is that in the space of less than two weeks my symptoms have worsened. I’m bleeding a bit today which I’m partially putting down to too much wine last night (because I’m stupid) but I’m wondering if I should do something about it? It’s not the first time by a long shot but I previously put it down to haemorrhoids but now I’m not so sure. The tumour is right at the far end of the large intestine so surely it wouldn’t produce bright red blood?

Getting hotter here too but at least there’s a breeze.

@tsonlyme I'm also waiting to have my first appointment to see what's going to happen and I understand your frustration. I feel very anxious.
If you are worried about anything do you have a number for the cancer nurses? I called about something silly the other day and they were really helpful.
I've also been really lucky (if you can call it that!) that I've been put in touch with another lady who's just coming out of breast cancer who has kids at the same school as my DD and she's has been amazing this week. If you feel like it would be good to have someone to talk to in RL and can find someone, I would recommend it.

When you say the far end tsonlyme do you mean near your bottom or near your appendix? Tumours in the rectum and sigmoid colon can produce red blood (mine did). Otherwise it might be a slight tear or something from the colonoscopy. Is it a lot of blood? It might be worth phoning the endoscopy department to see if that's normal. Or your GP maybe (they might also know who is now overseeing your case).

Oops tsonlyme I called you Lyme for some reason - sorry!! Perhaps as Leslie says it is related to the colonoscopy? If it is all the way on the right (mine was ascending colon) then it wouldn’t usually cause bright red blood, no. Are you having tummy pain? If you get worse tummy pain and bleeding after a colonoscopy it might be worth seeing the dr just so they can examine you and make sure all is ok?

whatwould it’s nearer my appendix. It’s not a huge amount and it’s not coming out on it’s own (iykwim) only when I go.

I haven’t been given any numbers at all. In fact until I get the biopsy and CT results I don’t even have a definitive diagnosis but I’ll eat my hat if it’s not - the endoscopist said he thought it was cancer and surely he sees this kind of thing a lot.

Anyway - hi ranout sorry you’re in this position too, I’m already an anxious person and the waiting is really not helping!
I have told a few people but I don’t want to go into symptom details with anyone because it’s so horrible, not sure why I’m embarrassed about it. My partner is away on holiday with his son (booked long before the tumour was found) and I don’t even want to tell him. Partly because I don’t want him stressing whilst he’s on holiday, as far as he knows I’m at work and fine today (I had a good day yesterday) when actually I’m sitting on my bed wondering if I’m about to bleed to death. Urgh. Told you I was anxious 😂

addle no more tummy pain than usual, I thought I was having an IBS flare for about a month before the colonoscopy but it’s my small intestine working far harder to push things past the construction.

If it’s just haemorrhoid bleeding I’m not that bothered about it. If I were haemorrhaging I’d know about it, yes?

Constriction not construction although I’d have been happier if they’d found a building site up there.

@tsonlyme do tell someone, it's the hardest bit, but once it's done it's better.
I'm naturally anxious as well, but I've got 2 kids to think about so it's business as usual here till I have my appointment on the 31st. I've tried small talk in the playground this last few days awful! Anyway that's over and done with now. Once we tell the kids next Tuesday I'm happy for it to be common knowledge and just crack on with treatment.
Everyone says this is the hardest part and I know what you mean, every little niggle in my body gets blown out of proportion in my mind!
I've tried to limit sugar, including alcohol this week as my diet is the only thing I can be in control of till next weeks appointment.
Sorry for the essay! Is there a good friend you can tell and have them stay with you till your DP is back?

Goodness the 31st seems like a long way off! Are you coping ok?

I’ve told quite a few people what’s going on it’s just the symptoms I’m being cagey about. Crazy really because I’m not a squeamish person and quite likely to make inappropriate jokes about bodily functions but when it comes to my own body...

Dp knows about the tumour - we don’t live together so I’ll need to get used to dealing with it on my own in terms of day to day stuff. I’m not unsupported though, he’s been great and I’ve stopped being terrified that he’s going to run, because I’ve heard of men doing that before.