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Cancer support 67. Waiting for tests, just diagnosed or needing a handhold through treatment

999 replies

purpleunicorns · 06/12/2018 18:22

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 Grin) 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

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Cally62 · 27/12/2018 12:44

Oh TQ Thanks for that...didn't know that it could be that high.
Will just wait and see what the consultant says.

Don't think it was right of my gp to mention cancer...It seems that it's the only way to get seen quickly.

To all of you that are in hospital or at home having treatment...and everyone else....Flowers Cake and Gin you are all bloody amazing even though you are going through this awful disease you are there for me and everyone else who needs a hand hold. You all deserve a bloody huge medal.

Mrstraveller · 27/12/2018 12:52

Noodles - yes what a pain. Sorry about the shingles but at least you are getting treatment for it now and there's a saving grace that it has come after you have finished chemo and had your op (i.e - it's not delayed anything significant in your treatment). I guess if herceptin injection is delayed a few days that's not going to matter too much at this point.

I am quietly cross for you about your ex. I can't bear people who get all teary and sentimental about family but then completely fail to actually do anything practical to help in real life. I really take my hat off to you for managing to look after young children and deal with all the cancer stuff. I really can't believe that he can bugger off to Australia for three weeks and not give a passing thought to the fact that that leaves you with ALL the responsibility and child care. Grrrrr.

ranout - hope last chemo goes ok

I had a bit of a milestone yesterday in that I had my last post chemo injection (hopefully). Just had a call from the hospital and my pre-op is tomorrow so it's all becoming a bit more real now that in just over 2 weeks time my left breast and a set of lymph nodes will be gone....

Thymeout · 27/12/2018 13:08

Just butting in for Cally. My Ca125 was 130+ for a Borderline tumour, 'clinically benign'. Ime, GPs, and those lower down the hierarchy, even Gyne Consultants, always go the worst-case-scenario route. GPs have to say 'suspected cancer' to justify a 2 week referral, even if it's really a case of 'probably nothing serious but...'

I'm on a 5 yr monitoring programme for the above Borderline. I've just had 6 weeks of scanxiety and a referral to Gastro for three slightly raised Ca19 blood tests over 2 years, stable, but 3 was obviously the magic number. My sort of Borderline has an affinity with pancreatic cancer which is why I ended up in Gastro. The referral was from a Gyne Consultant, but at my local general hospital, very much the B team, who have to follow protocol. It's only really the Gyneoncologists at a major cancer centre who are qualified to dismiss levels which could be your normal.

It's the right thing to do, but waiting is the pits, and of course your mind goes into overdrive once 'cancer' is mentioned. But I think it's true that most referrals turn out to be negative and it does save you from a long waiting list.

TQ v glad to hear you've been accepted for your trial. Lots of positive comments about the -rib drugs on ov ca sites.

Flowers to all the lacies, especially Leslie and Purple, who are having such a rough time at the moment.

Fluffysunshinepants · 27/12/2018 13:14

Just had my first tizz, ordered my lovely caring sister and brother in law out of the house and had a good bawl and now feel as guilty as hell! Hanging head in shame as i retire to bed to watch a movie

Toofaroutallmylife · 27/12/2018 13:48

Just got my biopsy appointment for tomorrow afternoon. 8 or 9 samples so it’s being done under general. I will have a fanny like a pin cushion! So scared. Am trying to come up with something to tell the kids (who are 11 and 14) that doesn’t freak them out - there’s no point telling them the real reason unless I know what the story is.

Namechangeforthiscancershit · 27/12/2018 13:51

Toofar glad you have an appointment. I know how scary it is but things are moving in the right direction.

Not sure with the kids. I’d be tempted to say romantic afternoon in hotel with DH as you will guarantee NO follow up questions to that! Grin

purpleunicorns · 27/12/2018 14:47

Hope your side effects aren't too bad TQ

Cally try and keep busy if you can to pass the 2 weeks, this is honestly the worst part when you don't know what's happening. Things will be so much easier once you know what's what. Go to the GP if you can if only to put your mind at rest about the other pains

Fluffy if anyone's entitled to a tizz it's us lot Smile I'm sure your sister will understand and hopefully you'll feel better for it now

Toofar I agree with Namechange about a romantic afternoon. I'm sure no more questions will be asked Grin Good luck with the biopsies

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WhatWouldLeslieKnopeDo · 27/12/2018 15:20

I'm utterly exhausted today after the festive excitement. I had a little nap earlier, which helped. Still waiting for the oncologist to phone back about whether I can start my tablets, which I was meant to start this morning Xmas Angry

Good luck tomorrow Toofar

I'm glad you're more comfortable purple

Mrstraveller yay for last injection Star I know it's daunting, but soon the fucker will be completely removed

noodles Flowers I hope the tablets and eye stuff work quickly

TQ I hope you're home now with your feet up!

Cally sorry you're feeling so rough. I hope your symptoms improve soon. I'll take the strawberry creams!

ranout I hope last chemo went smoothly. I'm very impressed it's the fasting!

javabean lovely to hear from you - how are you doing now?

Waving to everyone else, and huge hugs to everyone who needs them.

noodles44 · 27/12/2018 15:31

I hope you get no/minimal side effects from the magic pills TQ and you are released soon...

Thanks namechange hopefully it will be dramatically improved by the end of the week, the GP did say it may take 2-3 weeks to fully go away though. It is itchy along my eyelid edge now (all the way back to above my ear along the nerve line) I think I need to up my dose of painkillers again as the pain/tingling hasn't bothered me much so far.

MrsT yes, he is very annoying! The fact he won't see them for 3 weeks is not unusual in all honesty, he has seen them more than normal this last month because it was the eldest DD's birthday at the end of Nov and he has been to 2 nativity performances and 2 visits for Christmas. He was managing to see them for a couple of hours every 6 weeks up until this month! It is my fault as I said I didn't want any help from him for my cancer treatment, what I actually said was that I didn't want him to come to any of my consultant appointments with me as I would rather take a friend...

Fluffy your sister will understand and an afternoon in bed with a film sounds like probably just what you need right now.

toofar good luck for tomorrow. I agree with using the romantic hotel excuse, perfect to avoid additional questions. That suggestion did make me laugh namechange Grin

FuzzyCustard · 27/12/2018 16:15

Thank you all. Sadly my DH was diagnosed at age 50 so Shine is out. I used macmiaaln for a bit but even they aren't specialist enough... And the carers board is a bit rubbish really; obviously it's lots of people looking for support, rather than being able to give it.
You're all troopers though, and thank you for replying, when it's probably the last thing you want to do.
Hugs.

Toofaroutallmylife · 27/12/2018 16:17

namechange given that I’m told it will be uncomfortable to sit afterwards, I think my 14 year old dd would be mortified if I used that excuse!

Namechangeforthiscancershit · 27/12/2018 16:52

Fuzzy that’s all a bit disappointing. It seems like a real gap in terms of online support. We know there are a lot of people with spouses or other family members who are affected so where are they hiding?

I’ve recently started going to an in-person support group run by my local Maggie’s centre called “living with uncertainty” which is for people with incurable diagnoses, mostly quite young (i’m 34 and nearly the youngest, oldest probably 55) and there’s a spin off for spouses and partners planned. I know they do one for people who are post treatment called “what now” or something, there might be more. But then you may not fancy any more appointments as it sounds like keeping up with everything is pretty exhausting.

toofar oh no can you imagine! Something NOT to tell their friends when back to school...

How are you feeling about the appointment? Presumably they’re not going to tell you anything tomorrow as they’ll need to run all their tests on the biopsies first?

TwitterQueen1 · 27/12/2018 17:14

It's too early for side effects really... it'll be a slow accumulation as the drugs slowly build up in my body. So I'm having a glass of cava Xmas Wink. They let me out about 12.45.

purpleunicorns · 27/12/2018 17:40

Maybe not then Toofar. I have a 16 year old and can just imagine how mortified he would be if it was me sitting awkwardly after a romantic afternoon Grin

I hope you've heard back from your oncologist and have taken your tablets Leslie. I hate how they just assume we have nothing better to do than wait around for them to get in touch. It's not like our lives depend on them or anything Hmm

That support group sounds good Namechange. I don't think there's a Maggies anywhere near me. The nurse is going to put me in touch with Macmillan while I'm in hospital so I'll ask if there's anything similar, although no doubt I'll be the youngest too as I'm 35. I'm the youngest at chemo by at least 10 year

OP posts:
Toofaroutallmylife · 27/12/2018 22:43

Thanks for all your kind thoughts. I’m pretty scared but think it will be good to find some answers. It will take a while to get the results back - not sure how long.

The gynaecologist told me vulval cancer is something of a niche area. I’m still not sure if he was trying to be funny.

Hope everyone has a good night’s sleep x

TwitterQueen1 · 27/12/2018 22:48

Not too early for side effects apparently. We need a sick emoji!

Purple is the pain under control now? I do hope so. Looking at the Maggie's map you've got Edinburgh, Newcastle or Manchester... I thought there would be more.

ranoutofquinoaandprosecco · 27/12/2018 23:33

Hi @Toofaroutallmylife I'm sure this is a horrid time for you, but give yourself some time to just relax if you can. I'm not sure if this helps but my spin teachers mil had vulca cancer last year and she is all clear now. Fingers crossed yours isn't cancerous.Thanks

purpleunicorns · 28/12/2018 02:39

Oh not already TQ! Hopefully you'll only have a couple of days of side effects then you'll start feeling better. Did they give you any stronger antisickness pills?

The pain is fine until I try to stand up or move around. I'm going to speak to the doctor to see if he can change it to something else. I'm on oxycodon at the minute and it's absolutely rubbish despite them increasing the dose. I can't have morphine at the minute because of my kidneys and the junior doctor I saw this morning thinks fentanyl is too strong so I'm not sure what other options I have

OP posts:
KeepCalm · 28/12/2018 08:42

Morning all. Have just checked in for my CT scan and yesterday I bought a button down nightdress from Tesco for after my Op. that's the heady heights to report in with, I'll read back now see how everyone is doing Smile

purpleunicorns · 28/12/2018 10:06

Leslie I saw this and thought of you Grin

Cancer support 67. Waiting for tests, just diagnosed or needing a handhold through treatment
OP posts:
WhatWouldLeslieKnopeDo · 28/12/2018 10:08

Flowers oh no TQ I hope you got some sleep and are feeling better today

purple I hope they get your pain relief sorted

KeepCalm I hope your CT went smoothly

The oncologist/nurse never phoned back Xmas Hmm so I decided to just start my tablets as the pharmacist had said OK.

My breathing was awful yesterday. I think it might be because I've finally come to the end of my course of steroids. I have some spare though so I took a dose today to see if that helps. If so I guess I'll have to ask if I can stay on them long term. They're making my face so fat Xmas Sad but obviously that's better than not being able to breathe.

TwitterQueen1 · 28/12/2018 11:25

Leslie hope you're feeling OK today and that the steroids are helping your breathing. I'm OK this morning - had my stocking Christmas pudding for breakfast Xmas Grin

peridito · 28/12/2018 12:00

They're making my face so fat more of you to love Leslie .more of you to love .

WhatWouldLeslieKnopeDo · 28/12/2018 12:13

I look like a bloody hamster perdito Xmas Grin my cheeks are so fat I can't even smile properly.

That's me purple! Xmas Grin

TQ I'm glad you're feeling better. Sounds like a good breakfast Xmas Grin

LuluJakey1 · 28/12/2018 12:24

If we want to retain our high streets we should close all out of town shopping parks that have grown up in semi-industrial- next to main roads areas. They bleed high streets of business and are eyesores.

I'll give you an example. On the outskirts of Newcastle there is one called The Silverlink. It has grown up beside the main road to the Tyne Tunnel where it meets the main road into Newcastle. It is a poor area of North Shields/Wallsend, near the notorious Meadowell Estate. No one objected to it being built- jobs for the area were the big sell. It has grown vastly over the last 10-12 years.
The coucil have just spent 3 years revamping the infra-structure of roads around it - they had to pick up millions in costs when the private building company went bust. It has the usual array of pile 'em high shops - Next, Sports Direct, The Range, Wren Kitchens, M and S, Boots, Curry's, a big multiplex cinema that is a fortune to go to for a family, with a couple of the usual pizza chains attached. Nothing different.

However, the impact on local high streets has been huge. There was a M and S Simply Food in nearby Whitley Bay (next town along from our village) that closed when M and S opened on the Silverlink. It was the highest grossing Simply Food in the country on a square footage basis. It was always busy and encouraged people locally to shop in Whitley Bay- which at that point flourished and had several independent boutiques, bakers, nice cafes and restaurants,a new mini-shopping centre (which admittedly was cheaply designed with extortionate parking costs) delis, jewellers, chemists, amazing cakes and dessert bakers, off licence, DIY, several florists, independent furniture, decoration, lighting and gift shops.
Then the Simply Food was closed, despite it's success, so as not to detract from the new huge M and S on the Silverlink. Impact on Whitley Bay was huge. People just stopped going. It is like a seedy, grubby, half-dead high street now. Mainly charity shops and boarded up shops-with boarding painted to look like shops and businesses. Boutiques gone - except 1- decorating shop closed, off-licence, 3 florists gone, furniture shops, cafes, delis, bakers, art shop, a number of restaurants. Small shopping centre is drab and half-empty. What is left is poor quality tat or pizza /kebab takeaways, charity shops, Turkish barbers, ecigarette shops, tatoo parlours and a few long term family businesses that are now struggling badly. It is squalid. Same is true of other local high streets- Wallsend and North Shields have become increasingly empty and run-down. There are still Greggs, the odd fruit and veg shop, B and M bargains alongside the tatoo parlours and e-cigarette shops.

Newcastle - 10 minute drive away, has a huge M and S, Next, several Boots. There was no need for Silverlink. It is bad town planning- based on profit for the likes of Mike Ashley at the expense of communities and small businesses.

Whitley Bay should be booming. It has lots of high end housing as well as lovely pedestrianised seaside terraces with front to front gardens. It is on the coast, great for walks, lovely in the summer. Near to Tynemouth- very pretty, prosperous and lively village that attracts visitors to its antique market in the Station every weekend both days. But North Tyneside council's strategy has let Whitley Bay, Wallsend and North Shields down badly. There are increasing numbers of drunks and drug addicts around- put into B and B accomodation by the council. It's just not a very nice place to take two small children shopping now. They moved the police station from the town and put it near to The Silverlink. You never see the police now.

Contrast with Morpeth, Northumberland. Parking fees are expensive in North Tyneside - yet in Northumberland you buy a £1 parking disc that allows you 4 hours of free parking forever and Morpeth, Alnwick and Hexham are great shopping places. North Tyneside have free parking at Silverlink though.

DH and I go to Morpeth now to wander round the shops- it has a M and S, White Stuff, Fat Face, Seasalt, Monsoon, Mint Velvet, Hobbs, Laura Ashley, home decoration shop, a dept store, nice cafes and restaurants, a waterstones, outdoor store, off license, sewing shop, weekly market of cheese, plants, meat, fish, bakers all local produce. It too has a new shopping centre - beautifully and stylishly designed so it looks high quality. Morpeth is no more affluent than the Whitley Bay area but has been well-planned by Northumberland to attract retailers and create a community.

A local example but one replicated all over the country.

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