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

[purpleunicorns]

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 ) 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

Ooh knitted unicorn sounds amazing!

Hi everyone !

What a chatty bunch this is, as I lope off for a few days and come back to pages of new posts, and of course some new posters.

Really sorry to read about all the embuggerations and down right pain. Plus the poignancy of the Christmas posts from those with terminal prognosis.

OTOH - that puppy sitting straight looks exactly like a freckled Stuart monarch, and Leslie’s flowers are lovely.

It’s been s little trying for me on s different sort of way as my DMum has had shingles which was painful and made her quite poorly (sorry noodles probably not what you wanted to hear). But she’s on the mend now, thank goodness.

Cheese and chocolate mountains all the way now! The thing that I thought had got lost in the post arrived this morning. Only wrapping still to be done.

Which is a good thing as I‘ve been phenomenally tired these last couple of weeks. Will be glad to be back in my own bed tonight

I am here and reading through posts but don't have the energy to reply. Love to everyone

Appin I have cervical cancer too

Still in hospital as I've had an operation to join 2 pieces of my bowel together to bypass a rumour that was pressing on it. It could have been worse, the surgeon was expecting to open me up and close me again as he didn't think it would be operable. Still in lots of pain but hopefully home by Xmas day

Tumour not rumour

Love to Purple

Is it bad that I laughed at the idea of your bowel spreading particularly malicious gossip?

So pleased that it looks like you’ll be home for Christmas

I'm glad the surgeon was wrong purple. It's such a relief to hear from you. Rest up I hope the pain improves. Have the palliative care team visited you? If not, might be worth asking to see them tomorrow. They're the pain relief experts.

Good luck with your wrapping iVampire

I'm taking a bit of a break from the party to MN and Netflix. It's nice to see people. But so tiring. I've had plenty of cheese. Just waiting impatiently for the biscuits and chocolates to be opened!

Hi to All

Just suffering with my post chemo aches and pains and about to take painkillers and go to bed.

Noodles. Yes biopsies were taken when I was first diagnosed. I think it was confirmed in the first letter from the consultant how many nodes were affected but I didn’t really want to know the detail!

Purple. Glad they managed to operate and hope pain can be sorted out.

Hope everyone has as good a night as possible

Purple I hope you have a restful night. So pleased they managed the bypass.
Leslie I'm finding that now my next treatment is in tablet form, people are assuming I'm not that ill at all... it's sometimes very lonely having cancer.

Hi I’m new here. I’m 40 and I have a lovely husband and a beautiful 4 year old ds. I had colonoscopy yesterday and a suspicious mass was found, I saw it myself on the screen. I have been referred for a staging CT and the colorectal nurses. I am desperately worried for my dh and ds and I am needing a handhold please.

I have been reading your stories and all of you here are amazing. I don’t know if anyone is awake but I’m finding it hard to sleep tonight

Hi Allnight I’m awake too. I’m also at the waiting for results stage.

It’s really hard and Christmas makes it harder. On the surface we’re trying to prepare as normal, but my mind is racing on.

I’m trying to focus on what needs to be done in the next few minutes - which for me is getting some more sleep! I hope you get some too xx

Hi TooFar and Allnight, the waiting is very hard, especially at this time of year when everyone is so jolly but your trying to hold it together not only for your sakes but for the family. Fingers crossed for good news for you both, but whatever the result, good or bad, you will find fabulous support and encouragement on here!

Be gentle with yourselves over the coming days

Morning,

So glad to hear from you purple and that the op was possible and you will be at home for Christmas too hopefully.

Leslie that sounds the best way to enjoy the party (eating cheese with some chit chat & then nipping upstairs for a break) I hope you didn't have to wait too long for biscuits and chocolate

TQ I think unless it happens to you, or someone very close to you, there is a lack of understanding about having cancer. I have finished chemo, but am still very tired, but everyone thinks I am fine. I am suddenly more self conscious of my lack of hair too, even though it has grown in and looks better than it did over the summer. I think it is because I no longer bother with the wigs as they are too hot and feel very fake, so am just muddling through with a couple of bobble hats!
Do you still go to hospital for all your chemo when it is in tablet form? I am guessing you do initially at least, as they will keep an eye for any reactions to it. How frustrating though for you to have to explain and people to not understand immediately.

namechange I hope you didn't upset too many old ladies in Waitrose, that made me chuckle Going to attempt a trip there later for some Siscilian lemon tart if there is any left...

Glad your Mum is on the mend ivampire ... I didn't sleep the night before last for worrying, the pictures of shingles look horrific. I hadn't realised what potential damage it could do either, I just thought it was a nasty sore rash. I still have 2 X 50p sized patches of swollen reddish bumpy skin next to my eye. I haven't had any tingling (but am on painkillers following my op, which may have hidden that symptom) the visiting nurse just advised to keep an eye on it yest as the shingles she has seen looked angrier and was very sore, a nurse friend of mine who I texted last night said it was definitely a maybe. I am only entertaining the possibility of shingles as my daughter is getting over chicken pox, but it doesn't look exactly like shingles (yet!)

Sorry you find yourself here allnight the waiting is the worst part as your imagination runs riot. I hope you got some sleep and you too toofar

I hope everyone has a good day and that you are not too sore purple

Thank you toofar, fluffy and noodles Hoping everyone here has a good day

TQ my treatmentnus oral - both the initial chemo and my ongoing treatment. It is simply a case of taking a tablet daily.

There is a terribly scary list of potential side effects, and I was issued with a 24/7 number for on-call registrar (ring in if any signs of infection, or any of the ‘big’ side effects, or if you just feel horribly unwell for any reason)

I was seen more frequently in the first weeks if taking it. Every few weeks? Then it stretched out to 3 monthly (but went to 3-weekly when s liver enzyme went wandering).

It’s just 5weeks right now (nearest to a month allowing for Christmas interruptions) because they are considering changing drug, which might put me back to the more frequent monitoring for a while.

Mrstraveller I hope you slept well and are more comfortable today.

TQ yes, I've found people don't see oral chemo as "proper" chemo you're definitely right about it being lonely. I'm sending you a sneaky hug.

Allnightlong it's weird seeing it on screen isn't it I hope you get your scan quickly and a treatment plan. You should feel a bit better once you know exactly what you're dealing with.

noodles no, I just have to send someone to collect the tablets and take them at home. No supervision. It's the same procedure as for IV chemo with temperatures, infections etc. But otherwise I'm on my own really. I miss going to the chemo unit to be honest!

I'm sorry you've still got the shingles worry. You can't catch shingles from chicken pox, only the other way round. But I guess if your immunity is still down you could re-catch chicken pox. (Though hopefully if it was that low they would've noticed in your pre-op bloods and mentioned it.) Or you could coincidentally have shingles anyway, as it comes up at times of stress. Hopefully it's just a nasty rash from some other cause.

Waving to everyone and sending hugs to those who need them. And speedy recovery vibes to purple

I took a sleeping tablet last night as I haven't been sleeping well, so I actually got a semi-decent sleep and feel much better for it! I've also been sensible and cancelled some visitors as I'm just too tired and my breathing was rubbish last night. Now I can spend the day pigging out on party leftovers and maybe finishing my unicorn. I started sewing the bits together last night. I was feeling quite proud. Then when I looked this morning I'd sewn its ear on the wrong end of its head thankfully I'd only done one of them.

Oh fuck - have just discovered that a dear family member has been referred under 2-week rule, had a scan last week and expects results between Xmas and NY. Most of the family don’t know (and aren’t to be told yet) but I’m helping buttress the D&V bug excuse for them missing a big get-together.

There’s never a good time for scanxiety and the stress of not quite knowing what is up, but this does strike me as a particularly bad one.

So sod everything, and the Quality Street is now open. And all the best to TooFar and Allnight in particular right now.

And love to everyone here

Sorry to hear that iVampire I hope they get a good outcome. Enjoy your Quality Street. I'll have a green triangle if there's any going spare.

Definitely!

I have a poor relationship with green triangles. When I was little I was always told I had to have that one ‘as they’re the only ones you’d like’ - so unfair!!

Perfect! They're my favourite that's mean though. I hope you're eating aaaallllll the others now to make up for it. Except the gross orange and coconut ones.

tx iVampire I will be closely monitored because, as you say, the side effects are potentially pretty awful (incl leukaemia) and, because it's a trial they want to know every possible symptom. One of my drugs is not yet licensed. I will have to keep a diary of how I'm feeling & be weighed & measured, weekly at first and then biweekly.

I had a moment of great excitement last week when I noticed a very pink and healthy looking nail growing up behind the manky black one..

So sorry to hear about your family member.

Leslie I'll fight you for the green triangles . Sorry to hear you're not sleeping well and that your breathing is rubbish. Rest is definitely a good thing.

Just read a copy of my consultant's last statement letter - she talks about BRCA-wild, not negative. Can I call myself a wild child now?

I am wild-type whatever the hell that means. Let’s start a club!

I like the orange & strawberry creams... Sadly they are the ones the kids go for too! Grrr

Leslie That sounds very isolating to have your chemo in that way. I would miss the unit too as the nurses there are so lovely. Plus I am useless at following instructions as am easily distracted, so would be double & treble checking everything and have about a million alarms set in my phone! I managed to empty my drain into the bag last night, got chatting and never switched it back, so as a result my drain backed up and leaked and the op site is sore as it probably had too much fluid to deal with. I realised at 7am ish & switched it back. It is ok now, but I am really kicking myself.

Sorry to hear about your family member i-vamp my Aunty got called back from a routine mammogram a few weeks ago and found out quickly she had BC. She had her op the week after mine as it was all contained & so far, she doesn't need chemo. It is horrible as you know how all the waiting feels.

Glad to hear a pink toenail has been spotted TQ My big toes are really gnarley & one is coming away gradually from the big toe and all my fingernails are thicker than they were (& split) I have one black toenail. I was wondering when they would start looking normal again! I hate the look of mine, fortunately for me only 3 are sore and it is more when they are touched luckily.

Noodles try to rest if you can - it takes a long while to recover from the effects of chemo. I hate hearing myself remind people that I have cancer - I feel like I'm banging the same drum and they're bored of hearing it, but they do expect you to be A1 OK as soon as it's over. My Dsis seemed to view almost like going to the hairdresser - you go in, get your fix and then move on to the next thing. I think I have unrealistic expectations... I say I go to bed around 10pm each night and they ask why....

Your DC like orange and strawberry creams? really? I think that's unusual! It's 8am at hospital for me on Thursday... which means getting up at around 6.45 am. I've got to have a quick breakfast because I can't eat for 2 hours before the first pill, but since I will have to have bloods first I won't start treatment before 10am earliest I guess. Ho hum.

I'm hoping you haven't seen any more evidence of shingles? My youngest had it at 3 months! Her 2 sisters had the pox when she was just 6 weeks but she only had about 3 spots. Dr was all set to ship her off to hospital but she didn't seem too bothered. The rash was horrible though!

I googled BRCA wild namechange but it made no sense to me at all...

Wild-type is "normal" i.e. no mutation.

I'm K-RAS wild-type so please may I join the club too Namechange?

TQ yay for the new healthy nail! I will begrudgingly share the green triangles. It all sounds very well organised, as one would expect, of course. Definitely have an early breakfast in case your bloods/tablets are delayed. Otherwise you will be ravenous

noodles oops! That sounds very uncomfortable. I hope the discomfort wears off soon I double and triple and quadruple check everything every time I take the tablets!

I like the strawberry creams, but not the orange. When we get a box of chocolates I immediately quarantine any orange ones to minimise contamination of the other flavours. I also have a sneaky technique of leaving the strawberry until last as nobody else likes them, then I get to eat the others I like and the strawberry

I went for a little wheel around the park and then we popped into town. I haven't been to the shops in ages. It's hard work in a wheelchair though. All the aisles are so narrow! Finished off with a hot chocolate and then wheeled home in the rain, which I actually really enjoyed as I haven't been out in the rain for ages either. My sister is on her way and I'm about to finally get the Pizza Express mushroom and truffle pizza I was going on about the other day! I hope everyone has a nice evening.

purple I hope you are recovering well and KeepCalm I am thinking of you lots also Pandora, Aimlessly and everyone waiting for test results, or just needing a bit of extra love

Hello 👋🏻 am here but not really posting as uncharacteristically fed up.

Between my MIL constantly phoning (so she can refer back to her bloody prayer group cronies) and my Estranged Aunts taking a sudden interest, am exhausted. DH has stepped up and told them am no longer fielding phone calls and if and when we went to let them know of any news we have we will.

Lovely visitors today cheered me right up but I still have a lot to do before Tuesday, I haven't been into work in days and we have the surgeon at 12pm tomorrow.

All will be well and am keeping you ALL in my thoughts just now