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

TQ BRC-ABL is wonky for my type of leukaemia, and the detailed blood test where they want to see anomaly

Thanks everyone, I'm much better than I was although I dont think I'll be home by Christmas

No Leslie I still haven't seen the palliative team although I'm not in my normal hospital. I'm on syringe driver fentanyl which is helping. The pain has pretty much gone now as long as I remember to keep pressing the button. I'll have your orange quality street

Welcome to all the new people but sorry you need to be here

Oh and a very lovely person sent me this..... all read https://www.mdanderson.org/publications/cancerwise/celebrating-the-holidays-during-cancer-treatment--how-to-find-joy.h00-159150768.html?fbclid=IwAR1dlnY19WzmzRFhhI8G8rzLCq1vKr861QajRQumpQVHkyMn4QIbmJIyw1U#.XB8BsyC0x9U.facebook

I hope this works but am crap at links 

@BitOfFun & @Simmi1 thinking of you both too

@purpleunicorns sorry to see you're unlikely to get home. I wish I was nearer to help

Purple maybe we can sing to you on Christmas Day? That's going to make you feel so much better.... Sorry you won't be home. Keep on keeping on.

Sake
Sorry for crap link but it really is worth reading!

Leslie I would happily relieve you of your orange cremes! My absolute fave. Opened a box of roses yesterday and was very disappointed - what has happened to them

Purple really good to hear you're feeling more comfortable. Hopefully you can have Christmas on whichever day you make it home xxx

FFS lost my post again.

purple I'm glad you've got decent pain relief, but sorry you're likely to be in for Christmas

KeepCalm grr at MIL and aunt. Not what you need at all. My grandparents are similar with the prayer group. They've not offered us any support from them, just proudly told us about randomers who are praying for us well done to your DH for getting them to back off.

I can't believe how many people actually like the orange ones

Actually Brazilian Darkness were my no1 but Cadbury seem to have dropped them. Gutted...

Leslie have you seen the thread debating cheese

Helloo! Couldn't not join in at the mention of the orange ones! They are mine... ALL MINE! am currently scarfing down a box of orange matchmakers too... mmm yummy Christmas!

Hello keepcalm - all good here. I have family over from uk so just been busy with them . I also have estranged relatives taking a sudden interest in me but I just ignore them and don’t respond to calls/messages. Glad your DH is keeping them away from you.
Physically I’m good at the moment as it’s been 2 weeks since my last chemo but cancer is always there at the back of my mind. I was pleased to see the post by cleanasawhistle as I also have an aggressive stage 3 breast cancer - your post gave me hope
Your flowers are beautiful Leslie. Glad you’re feeling a bit better purple. Have a lovely night everyone xx

Simmi1...Take care x

Orange ones are the best!

I get what you mean about prayer groups, I think I have most of Ireland praying for me at the minute. Although it's DHs family who I have never met and if it makes them feel better for it then I have no problem with it. Although I think I'd feel differently if they lived close by and didn't offer and practical support.

Ugh these oxygen prongs for your nose are not much fun. The nurse keeps calling my naughty for taking them out and now I've lost my eye mask so I can't get back to sleep

Glad you're feeling better Simmi and hopefully you'll be able to enjoy Christmas 🎄

I’m awake too purple - but really must try mindfully counting sheep or something, as I have a fair amount to get done.

Sorry to hear you have the prongs too, and are likely to be in over Xmas.

I had midnight(ish) tree decorating going on here ‘because it’s technically morning, Mum’

Hi. I have been reading this thread over the past few days. Lots of helpful information and kindness so I would like to join in, if I may.

I am 46, no kids. Just me and DH.

I was diagnosed with Inflammatory Breast Cancer on 22 November. On 3 December it was confirmed that it has metastasised into my lymph glands (armpit and thorax), my liver and my ribs. So I am Stage 4.

The first symptoms I had were not really even related to my breast. I had been absolutely exhausted for a few weeks but had been through an extra busy period at work and we haven’t had a holiday for well over a year so I put it down to that. Then my left breast became sore and red. I vaguely worried about it for a week or so and tried to get a GP appointment to no avail. One Saturday evening in late October I was shopping in Sainsbury’s, picked up a basket and felt something go ‘pop’ in my shoulder. Got a GP appointment the following week. Given antibiotics for mastitis. Forgot to tell them about the shoulder as I thought I had simply pulled a muscle.

Seen at the breast clinic on 22 Nov and was given the IBC diagnosis the same day! They were immensely quick and thorough at Guy’s in London.

Had first chemo on 13 December. I have 4x 3 weekly sessions of EC then 4 x 3 weekly docetaxol. They will also be starting me on Zoledronic Acid due to the bone mets. The pop in my shoulder was me fracturing a rib which has been weakened by the cancer.

We have had to cancel a much-longed for holiday to visit DH’s family in South Africa. Gutted about that.

All a bit bewildered at the moment. Things have happened so fast.

I am taking a six month sabbatical from work thanks to critical illness cover insurance.

That’s my story to date.

I have a question about picc lines - is it really worth it? I am supposed to be having one fitted on NY eve but the thought of weekly dressing changes, being paranoid about infection etc makes me wonder if it is really a good thing... except I have quite hard to find veins and am just as worried about collapsed veins. Would anyone mind sharing their experience?

I am now going to brave Tesco to do some Christmas food shopping. Just me and DH on Christmas Day but have my Mum and her partner and two friends coming on Boxing Day.

Sorry that was so long

Hello Huffy so sorry you find yourself here. That's all happened very quickly... it must be very frightening. How are you feeling after your chemo? I have ovarian cancer but you'll get lots of help from everyone here with bc.

I don't have a picc line but everyone says they are marvellous and I've only heard of one or two infections so I don't think they're very common. If chemo is every 3 weeks I don't know whether it's worth it though - someone will be along soon with more experience.

Tesco at 5.30? Blimey. It was pretty manic yesterday at noon. I think I'm done now. My youngest (19) has threatened promised to make a tofu chocolate mousse cheesecake later... I'm sort of looking forward to that. Dairy doesn't agree with her but it does me ...

Purple hope you got back to sleep. I woke at 4.44 with a very cross dream about every Tom Dick and Harry using my front garden as a car park.... goodness knows why.
Let me know if you need a supply of eye masks. Laura Ashley have a glut of them!

Morning all. Dodgy sleeping here even though I was in bed before 9pm 

@LondonHuffyPuffy hello, sorry to find you here but welcome. I have BC which has spread to lymph nodes and lungs. 3 lots of chemo in but it isn't working so off for another appointment today to discuss Plan B. I haven't had a picc line so can't help there, sorry. Good luck in Tesco!

@Simmi1 glad you're doing ok! DD3 currently raging that her cousins in WA get christmas before her lol

Orange ones are THE BEST btw. (Chucking in my late vote) any other opinions are wrong

@purpleunicorns it's the Irish Mammy-In-Law that visits once a year. Possibly phoned maybe once a month previously. DH believes she's being kind however I personally believe she's being called out by people constantly asking her how I am (I've a poor DIL with cancer didn't you know?!) and she can hardly answer that she hasn't spoken to us in weeks. She'll merrily be going round saying she's never off the phone to us and there's no news

My aunt is a whole other story that's fit for another thread....... basic summary. My (decreased) mum was eldest of 4. She passed away over 10yrs ago aged 69 after a 6yr battle with cancer. I was very close to her youngest sister and one of the others was supposed to be my godmother. When I fell pregnant with my 4th DC they were awful about it & we fell out for the first time ever. I lost him that night & ended up emergency case, hospitalised, 2ltrs of blood down and devastated. None of them came. They didn't speak to me for years due to the argument. I was left heartbroken over our third MC and distraught by their actions. It honestly nearly broke me. NOW that I have cancer they're all interested again and I just cannot being myself to let them in again as I've never known hurt like it. My mother brought me up well so I am polite and civilised & will answer their questions but they won't get to do it twice.

And that's the short version

Morning all, i commence my first chemo today, hoping all will be ok for tomorrow and i can enjoy Christmas day with my beastie and family.

Not my usual way of spending Christmas eve but hey ho.

Wishing everyone well

It'll be fine Fluffy Do you have a kindle or similar to keep you occupied? The steroids will keep you going for a couple of days (and nights) - you might start to feel less well on Boxing Day. Take a shawl or big scarf into hospital with you. The wards are either too cold or too hot!

@Fluffysunshinepants I always felt absolutely fine just after chemo. It was the 5/6th day the joint pain started & second wk the bathroom issues commenced. Everyone is different though & some people absolutely sail through it so am hoping you'll be one of those.

Fingers crossed your chemo nurses will be as lovely as mine and all in great spirits today

Good morning all. Can I ask is it normal to start feeling all sorts of things near the site of the cancer? Since Saturday when I got diagnosed I have felt aches and pains including down my leg which weren’t there before diagnosis. I’m assuming it’s anxiety but I’m looking for a bit of reassurance.

Also does anyone have any tips on supporting small children please? My husband was visibly upset many times yesterday and It’s so hard.

Hi Huffy sorry you’re here, but I hope you will find it as much of a lifeline as I do. It’s a wonderful group of people and you never have to explain anything, or have people look at you weirdly because you’d rather debate Roses flavours than talk about your cancer.

I had a PICC line last year for my first block of chemo, no problems, loved the ease of blood tests, infusions etc. Was sure I’d never ever get used to it but 2 days later it was like it had always been there.

The block I’m having right now they tried to do without and I really didn’t get on well with the cannula. My veins had always been very good but are now much less so, and they would take ages to get anything in, then I found it very painful (not everyone does at all). So I begged for another PICC, they gave in and now it’s plain sailing again.

Dressing changes I have the choice of having the community nurses come to me (boring as you have to stay in all day and tricky with work, but might be ok for you if you are taking a sabbatical anyway and you treat that as a rest day) or going into the surgery super early on a Monday morning. It’s another bit of cancer admin but you get into the swing of it very fast.

I know they warn you re infection but I don’t know anyone who actually managed to get one.