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

Firstly rocket I'm so sorry to see you here again, what a shock for you. I'm always hoping for new drugs just around the corner.

flippy it sounds like you have an interesting day coming up, I hope you'll be pleased with the results.

Yesterday and today have been pretty painful, I can't lie. I think the worst has been coping with the air that was pumped into me, wow that's been sore and it's not all been eliminated yet! I'm also realising that the cut in my tummy button is very painful, the other two I can't feel at all. I haven't dared remove the dressings yet. I'm hoping tomorrow will be a better day. Night all

mrsrhod ugh the air is just awful isn't it! I was desperate after my first op and even tried gripe water (it's disgusting). My nurse recommended "peppermint water" which doesn't actually seem to exist she was adamant that it's not the same as peppermint oil. Peppermint oil might help a bit though. Or Buscopan if it's crampy. I hope it passes soon and that you get a comfortable night's sleep

Mary sorry you're back. Hopefully only a short visit :) do you have an appointment yet? I hope you are recovering well from the surgery. I'm really sorry but actually chewing has died. Her cancer was incredibly aggressive.

penguins ah the dreaded health insurance inventory. Always cheering...

Goodnight all

Mary Sorry to hear the mass has grown. Hope there's an innocent explanation. I have dizziness all the time too since about October, very lucky I can work from home and my kids can walk themselves to school. How old are yours? Mine are 12 and 11. Do you have anyone that can help? There are lots of causes of dizziness so hopefully its nothing too bad - have you had blood tests? Mine gets much worse if I am bleeding. I should really discuss it more with the doctor. The weight loss is good if you wanted to lose it but definitely mention it.

MrsR Hoping tomorrow is better though it does take a while. I felt like I was a fizzy drink for a few days. Don't remember this from last time but maybe the longer the op the more gas you get.

Leslie Hope your ear continues to get better.

Rocket so sorry you’re back so soon after finishing treatment, getting a secondary diagnosis is such a kick in the teeth.

I saw my onc yesterday and have a bit more of a plan. I will have a CT scan within the next few weeks to see if the rads have shrunk the tumours and check for progression elsewhere. I will then get all the pre chemo checks, and start Docetaxel with H and P in late April. Doctor has assured me that she got most of the cancer in the radiotherapy field and that it carries on working for months after finishing, so I’m trying to stay calm about not being on systemic treatment at the moment. I have been ok’ed to go on a small break before starting chemo which I’m looking forward to. I got insurance with Eurotunnel after my previous policy stopped me mid annual cover for having inoperable cancer. Eurotunnel just ask if you are terminal or if you are travelling against medical advice, but only cover Europe.

Love to everyone waiting on results and going through treatment.

hi, I have been following this thread for ages and reading your inspiring and heartbreaking stories. I have finally plucked up the courage to join you, I think I will need all of the support I can get over the coming months.

Doctors have found a large mass in my pelvis following MRI and CT scan. This followed a discovery during a colonoscopy. Strangely they can not determine where exactly the mass is so I have been told just in the pelvis. I have been told it’s 95% cancer but need to wait for other biopsy to confirm. They are talking about chemo and radical surgery and told me to prepare for a difficult journey but that it will be cured.

Im 45 and have two children aged 9 and 13. They were devastated but now are looking for ways to make me better.

How long from a diagnosis do you typically have until treatment begins? I am trying to plan for relatives to be here to help but have no idea when. Any other tips to help me prepare would be greatly appreciated. Has anyone else had a mass in an unidentified place??

Hi swaying ** for me I think it was around 2 weeks before treatment started, although I had my treatment dates through before then so I knew what was going to happen and when.

This is the scary bit when you're waiting around and not knowing exactly what's going to happen, once your treatment plan is in place it will get easier to deal with.

I have a 15 year old and I found that giving him jobs around the house helped him to feel like he was helping me, plus it'll give you a break.

This is a great place to be, everyone has different types of cancer and gets different types of treatment so they'll be plenty of people here with advice, or a handhold when you need it

Mrsrhod when I was having treatment I was given peppermint capsules to help with gas, maybe worth asking about, if not peppermint tea might help

Hi Swaying so sorry you find yourself here. As purple says, this is absolutely the worst time - waiting to find out what the actual diagnosis is and what the treatment plan is.

If it's any help, I worked all through my chemo last year so you may be able to do more than you expect. I stopped for surgery - radical hysterectomy and debulking but I have been and continue to be OK otherwise. The very worst thing about chemo for me was the brain fog! I couldn't think straight and couldn't get words out - but this improved significantly after the first couple of chemos.

Stocking up the freezer is a good thing to do - ask friends and relatives to cook meals for you in foil trays that you can shove in and leave until you need them.

If you don't already have one, I'd recommend a Kindle Fire or equivalent and download some books and music. They're great when you're in hospital, waiting for scans or appointments and whilst having chemo too.

Thanks everyone, your advice is so valuable as you have been there and done this.

Twitter I have followed your story as I think you are near me, are you treated at the Royal Berks?

I am self employed and do a lot of driving so have had to temporarily stop as that is when my pain is the worst. I am also taking a multitude of pain killers so could not concentrate. The mass is sitting on my sciatic nerve so the leg pain is horrendous, particularly at night.

Hi Swaying I am indeed treated at RBH and live west of it. PM me if you want to meet up or connect on the awful FB (I mainly use it for keeping in touch with the DCs).

Being self-employed is a bummer. I am fortunate to have big company benefits behind me.

So sorry to hear you're in pain. The weird thing about my OC is that it has not caused me any pain. Aside from recovering from the op I haven't had to take pain killers (yet). Maybe if I'd had pain I would have picked up on it sooner.

Swaying sorry you've had to join us I had surgery about two weeks after my diagnosis. Do you know what surgery they are planning? I hope that they can sort the pain as that must be very wearing.

Mysillydog I'm glad you've got more of a plan :) and also that you'll be able to take a holiday before treatment starts. Fingers crossed for the chemo doing a good job.

Happy Friday everyone :) I've been sitting in the garden enjoying the sunshine. It's a bit chilly but I'm determined to make the most of any good weather so I just wrapped myself in a blanket. I hope you're all having as good a day as possible, and that mrsrhod and penguins are recovering well

Glad you got to enjoy the sunshine Leslie, hope you had a nice day. Just felt sick for the second day but its the weekend so nice to have all the family back. Managed to get travel insurance though first company refused to insure us.

Mysillydog Hope you get to go on a lovely short break, lots of nice places in Europe. So sorry to hear its inoperable

So sorry to hear your news Swaying and hope they start soon, they should do.

Love to everyone else and hope you all have good weekends.

Hope everyone had a good weekend. How are you Leslie?

Just been feeling sick all weekend, three days of it now, but phoned hospital and they said it shouldn't be related to surgery but said everyone in this area has a sick bug. Not sure how I could have a sick bug when I haven't left the house and no-one else has one. Still they didn't seem too worried which is the main thing.

Very quiet here. I hope that means everyone has been enjoying their weekend.

penguins sorry you've been feeling rough. What pain medication are you taking? It might be a side effect of them, or of the anaesthetic itself. I hope it eases soon

I'm alright, thank you :) my ear is much better, but I'm not sure if it's completely cleared up so I might have to go back to the GP tomorrow.

Glad your ear is much better Leslie though maybe worth checking its completely gone.

I haven't taken any meds for about a week but think the GA might be the cause.

Good morning lacies!

Do you have any antisickness tablets penguins?

I am seeing the GP in a little bit. It's still a bit yucky and sore.

Morning all

Swaying, Rocket and Marypoppins* I am sorry to hear your crappy news .
Leslie hope your GP can sort out your gunky ear. Penguins I hope the sickness starts to improve for you soon.
Mrsrhod I hope you're recovering well.
Flippy how did the tattoo go? mysillydog I hope your travels go well.

The weather is beautiful here, so I've started the day with a short and very slow jog around the park. More of a shuffle than a jog really. It's been a fortnight since my scan, so I'm wondering when/whether to chase the hospital. Might give it until Weds.

No anti sickness tablets unfortunately and still feeling sick, urgh. Taking day off as sick leave and will try and sleep it out.

Hope the doctor can give you more antibiotics to get your ear better Leslie

Hope you get results as good as they can be soon Turn, they are normally quicker with bad news so hopefully its a good sign.

penguins sensible plan. I hope you feel better after a good sleep

Turn that's fantastic about the jog. Well done :) I hope you hear back about your scan soon. Two weeks is a long time to wait.

I have more antibiotics and a steroid/antibiotic ear spray. I have to keep my ear dry for four weeks so I won't be joining the woof family swim team for a while.

I hope that everyone's week gets off to a good start. Good luck to everyone with upcoming appointments or waiting for results etc

Right, just trying to catch up...

TQ are you getting your scan results this week? Good luck

MaryPoppinsPenguins do you have an appointment date yet? Hopefully not too long to wait.

rocket how are you feeling after your first Kadcyla?

likeazebra have you had any news about DD's lesion yet? I hope the removal went well and that she's recovering quickly.

Rtpx have you had a referral to the breast clinic? I hope you don't have to wait long for answers.

I think that's everyone with upcoming appointments/treatments etc but if I've missed you then I'm really sorry!

Gosh Leslie you are so good at keeping up with everyone’s progress. My 23 painkillers a day leave me forgetting my own name never mind any others.

Twitter I hope you have good news today and anyone else waiting for results.

I’m waiting for a phone call following my case finally going to the MDT, I should then get allocated a gynaecologist consultant. I have a colonrectal consultant at the moment as they originally thought it was bowel cancer, this is how I followed Leslies progress so closely.

I’ve been told the mass is in my pelvis but they can’t determine where. This really confuses me, I’m assuming it means it’s in several places, I know it’s in some pelvic lymph nodes . I’ve been told it’s curable, but how do they know if they don’t even know what it is? Has anyone else had this or similar?

Penguins I hope you feel less sick, it’s horrid when the feeling is constant.

I was talking to a friend this morning who was moaning about her 10 stone weight, I recommended a colonoscopy followed by a cancer diagnosis, I’ve lost half a stone in three weeks. My friends have been great but I find myself having no interest in things like this, all I can think is ‘so what, I might die, who cares that you don’t like your new hair cut’. Obviously I don’t say any of this. How can I become less self absorbed?

Sorry for the disjointed ramble, it’s totally reflective of my head at the moment.

I totally get that swaying, I lost interest in everything when I was diagnosed. Nothing seemed important anymore, I have no advice but just wanted to let you know you arent the only one who feels like that

Swaying I hope you get your phonecall soon. It must be very unsettling not knowing what is going on. Sorry I have no useful experience but hopefully someone else will. When I first found out my cancer was back I remember just standing in the supermarket staring at people going about their everyday lives and feeling completely detached. It seemed so absurd. You will start to feel more normal again. It just takes a little while

I'm sorry about the painkillers too. I was like that a few weeks ago when I had my syringe driver. Thankfully the tablets don't really seem to have that effect, certainly not at the low dose I'm on. I hope yours are helping with the pain.

Wasted journey to the hospital today because my scan results hadn't come back. I did think it was ambitious of my consultant to book the appointment only a week after the scan... so now I have to wait until I get a phone call from my onc nurse with the results - no idea when that will be. The consultant did say that he couldn't see any changes, ie no progression, which is good news, but the radiologist needs to provide the expert opinion.

I'm a bit cross about the emotional expense of this. I've been dreading the appointment, got upset on the train and in the hospital (and appt was half an hour late) and then get a "sorry we don't know." Now I'm exhausted.

Swaying it's impossible NOT to be self-absorbed when you've such bad news so don't even try! It IS all about you and you don't have to make excuses for that. I think sometimes with the pelvic area it's difficult to know where the primary mass is - the cervix and womb and ovaries are all so close together they may need more time to establish the root site.

Leslie I hope you were outside in the sun again this morning? It's so lovely - I actually had to take off my coat walking up to the hospital. Hope your ear improves soon.

I'm sad that hardly any birds are visiting my new bird feeder! I was hoping to be entertained from my sofa.. Are they all just not hungry? Or maybe they're just used to being in fed in my NDN's garden.

Waving to everyone else.

TQ grr how frustrating! I hope you'll get a phonecall soon. Though I find that so much more stressful than having a booked appointment as every time the phone rings it could be them.

It might take the birds a while to discover the feeder. Ours has been very popular recently with all the snow. We've had lots of long-tailed tits :)

It was gorgeous this morning. I was indeed out in the garden. And my rabbits are happily frolicking.