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

That's a fab song TQ. My dad sang it in a charity concert last year.

My first single was the Beautiful South - Don't Marry Her (the censored version, obviously). I was most confused by the line you have to wash the car, take the kiddies to the park like going to the park with their offspring wasn't every adult's dream!

Leslie,I've got a new diary for 2019 and I'll be honest I've not written in it. I just can't bring myself to write in it and potentially waste a whole diary for less that 3 weeks.

I've always been able to see myself in the future like I could always see myself as a qualified nurse or as a mother but I can't see past this. I know it sounds fucking daft as a brush.

Actually that doesn't sound daft at all. Oddly I've always had the same. I've never been able to see myself as an old lady. So when I found out my cancer was incurable I thought that it was connected. But now I can easily see myself living my happy parallel life where I don't have cancer, so it's absolutely not a reliable indicator of anything, except our insecurities and fears and perhaps not very good imaginations :)

Now, use that diary. Do you really think that if you did die your family would be thinking "yay, now we have this unused diary"?! It would probably be forgotten about and none of it would be used. And that would be even more of a waste.

Oh my love, Leslie are you kidding or are you really that young?

Pandora was t doesn’t sound daft as a brush or anything at all.

Happy Today and Tomorrow. I can’t be doing with future stuff. It’s a bit too messy.

Sending you both tons of love though xxxxxx

Leslie is indeed so young. I had the Beautiful South album but not censored so I wasn’t allowed to play it around my parents! I think my first ever single was Take That (still waiting for Mark Owen to propose)

Well happy new year lacies. You have all my new year wishes. I would love 2019 to hold some good news for all of you. Good news, bad news, indifferent, insensitive consultants, crazy grandparents, naughty (or flatulent) pets, well meaning adverts that give us rage, food recommendations, I hope we’ll all carry on getting as much support and laughter from each other as we did in 2018.

Pandora not daft at all.

And London nice to meet another solicitor trying to balance work stress with all this nonsense!

I was having to explain to my girls last night who Madness and Suggsy were. My youngest (12) was more excited about Joe Sugg

My first single I bought was Goodbye Stranger by Pepsi and Shirley...

Here's to whatever 2019 brings our way! I think today's mission for me is to shave off what remains of my hair

Oh and cairnzy I'm with you on not feeling worthy - until I joined the chemo bus - as I felt that others were dealing with stuff so much worse. But the mutual support here is fabulous, and thankfully no one has wished me a 'happy and healthy 2019'

There’s no competitive cancer here! There is always someone worse off out there, so no one is ever a fraud for needing support for whatever they are going through, whether it’s waiting or cancer at whatever stage, wherever it has taken residence.

My youngest (19) asked me who Jimmy Osmond was yesterday when I commented on his stroke and then laughed at my 'sad face' (because of her not knowing who he was, not because he had had a stroke).

Pandora I refused to make any plans at all last year because in November 2017 I was given a year. Since I'm still here and going pretty strong I am cautiously making some - starting with going to see Hamilton in April. They wouldn't be doing the op if they thought there wasn't at least a reasonable chance of success. Hold tight.

Happy new year lacies,

I hope everyone had a good night. We had a quiet one, I was thinking I would be in bed soon after the kids at 9pm, but we ended up watching the James Bond, chatting and then put Jools on. We did the baked side of salmon (in an Asian inspired marinade) with stir fry noodles & veg (thanks ranout for the idea) but typically both kids refused the fish & just had noodles and veg.

pandora not daft at all, I have never pictured myself as old either, just assumed I would be I guess party due to the longevity of my grandparents. You must use that diary too.
I agree that the surgeon must have been looking at the absolute worst case scenario, not sure what was achieved in saying this to you, other than scaring the pants off you.

How is hospital purple? I hope your pain meds are getting there and you can be discharged ASAP.

knicker I had an awful lot of healthy 2019 comments in Christmas cards, but no one actually said it to me last night! I do think people think now my op is done, I will be back to normal again very soon. I am less optimistic as really don't feel great at all yet. It is just over 2 weeks since the op though and I have shingles on the side of my face by my eye, so not expecting to feel brilliant just yet or for a while really. My appt with the surgeon is on 3rd & I think I will find out then how badly affected the lymph nodes he removed were & what stage it was at too. Hopefully then I may get my critical illness to pay out as I put in a claim in August which has not been paid on yet, I think they are waiting to gauge just how bad I am first.

I hope everyone has a good day today. My brother & sil fancy a walk down at the coast, but my dog went to my parents for a few weeks (until I feel confident at grabbing him if needed on a walk) so it feels a bit weird to be going without him. I have only been out of the house a few times since the op, so not sure how far I will feel like walking either, I could quite easily stay in bed today & do nothing much! Never mind, it will probably do us all some good to get out & get some fresh air....

Am impressed with most of the 1st records too btw. I bought my first 2 together on cassette and they are probably at opposite ends of the cool scale.... Shaky by Shakin Stevens and Ghost in the Machine by The Police...

Oh wow so many posts while I've been sleeping the new year away! I'll try and catch up once I'm home and sorted. Nothings happening today with it being new year but tomorrow I should be seeing the pain management team again, I'm in a lot less pain but just so uncomfortable all the time. I'll also be seeing the stoma nurse as I've had constant dire rear since my op.

Happy new year to you all. I hope it's peaceful and as painfree as possible

Hi all
I'm just popping in to wish you all 'Happy New Year.'
I hope we will all find loads of moments of happiness and love

Noodles I'd have eaten your salmon! Sounds delish. Go for a short wander, it will probably do you some good. I know what you mean about being confident with the dog - we have a 46 kg Labrador and I didn't take him off the lead until I was fitter. Luckily DH does the long morning walk.
Give yourself time to recover; I'm now 2 months on from my mastectomy and really only just finding I can sleep and move without being conscious of it. Of course you have the update on your nodes on your mind too, and I definitely find the mental side of all this quite tiring.

Talking of Delicious, if anyone fancies a tv recommendation do watch this (Dawn French and Emilia Fox) the 3rd series starts today I believe. Catch up with 1&2 first if you've not seen them x

TQ it’s funny you should mention Jimmy Osmond when people are talking about first records as my first purchase was Long Haired Lover From Liverpool. I rarely admit that. My taste in music has matured considerably.
I’m seven weeks post surgery and still tender in places. And I hate the feel of the scars. Feels weird. Like it’s numb in places.
My radiotherapy starts tomorrow. I’m feeling a bit sorry for myself. DH has had to go and stay with his elderly Mum who has just had a hip replacement. Left a few days ago and will be away for a few weeks. My DDs have been home for Christmas but one leaves today and the other tomorrow.
And I’m feeling some side effects from the anastrazole. Fairly constant headache, hot flushes and very low mood and tearful. Anyone experienced similar? I’ve been taking them for about a month. Hoping the symptoms die down.
Feels better to have a little moan. Like others have said I feel I shouldn’t complain because others are in a worse situation. But I’m feeling a bit down today. New Year melancholy.
Happy New Year to all. And thank you for the help, support and kindness of everyone on here.

Hi All

Ginisatonic - I've been feeling a kind of low level melancholy over Christmas and New Year. Almost like I am just waiting for it to pass. We have had a really quiet time. Thought I would go to bed at my usual 9pm last night but in the end did stay up. I got a bit weepy at one point thinking about what my life was like before my diagnosis compared to now but then seemed to cheer up and we watched Jools Holland and then then the London fireworks on the TV.

It's on my mind that I've got the next big hurdle coming shortly in terms of the op and recovery from that. It also feels weird that I would be having chemo next Wednesday and now I won't be. I know chemo is bloody awful but I kind of feel like my life had some sort of rhythm where I was just "doing chemo" and now I've got a whole new thing to face in terms of the op and recovery and losing my breast. I know it's got to be done of course.

Can I ask those who've had mastectomy what pain levels were like afterwards, were you prescribed anything? I still have some of my trusty prescription strength co-codomol left in case.

mrst I can’t advise on the pain after mastectomy as I had lumpectomy and sentinel lymph node removal both sides. But I was discharged with oromorph - didn’t have to ask just given it. So, I’d imagine they’d give you some decent pain relief to take home.

I was sent home with cocodamol Mrs again it was given to me on discharge.

Dose yourself up at bedtime and keep some next to the bed so you can take them in the morning 20mins before you need to get up.

I'm finding chemo harder than the op and recovery - we are proper opposites

Afternoon lacies

I totally can't remember what my first single bought was! I know my first album was a Now compilation! I'm an 80s child.

Sorry to hear so many of you are struggling at the moment. I think New Year is a strange enough time without bringing cancer into it. We saw really close friends and their kids last night at our house and it was lovely. I was in my pjs by 9pm! I'm paying for it today though as I'm shattered and my aches are back.

@WhatWouldLeslieKnopeDo your gravity blanket sounds great. Let me know what you think. I would like one but I get hot sweats in the night and worry if they would ruin it!

@Pandoraslastchance I just want to kick you so called team up the arse. Sorry, if that offends, but you've got enough going on for them not to be as supportive as possible. I know they need to let you have worse case scenarios but they should also let you have the best case as well. As @WhatWouldLeslieKnopeDo start filling that diary. I'm going to go and get one once the shops open tomorrow.
To everyone else, I have read the thread and I'll catch up properly tomorrow. Waves all round and to those who fancy them!

Happy New Year lacies! 🥳

mrst, hope the op goes well. It's an abruptly defining moment I suppose, going into surgery. I had IV pain relief after waking up from my total mastectomy (1 side) and DIEP reconstruction. Not sure what medication it was, but one of those drips where I could adjust the flow myself. But it made my blood pressure go too low, to the point where I was almost fainting. My normal BP is 80 or 90 over 60, and it went down much lower than that.

So they took out the IV after a day (well I told them to) and I was on ibuprofen and I think codeine in the hospital for the five days I was in. I was given codeine when I was discharged, which I used it for 3 days at home. The pain was manageable. The physio taught me exercises to help with stretching and getting muscles to relax around the shoulder/chest area. The nurses should be checking in regularly to ask you how much pain you're in, also bring it up with doctor/s that come in to visit you as you recover, and hopefully you should get what you need.

KBG I bloody love Delicious and I fancy the grumpy old adulterous chef a bit (a lot)

Leslie I have a gravity blanket and I love it so would be interested to hear your reviews!

Thanks all. I have been told that I will see a physio in hospital to give me exercises to do to avoid frozen shoulder. Apparently you are supposed to do these straightaway even with the drains in .

KBG. Based on your experience hoping I won't find the op and recover too bad then .

With the chemo I kind of managed it; side effects not pleasant but I think whilst it's going on it just became a routine. Maybe after 7 rounds it just became my new normal. The first one was the worst because I was still in shock after my diagnosis and didn't know what the hell was going on most of the time.

Gin you are truly brave to make that JO admission I was a David Cassidy girl - in my day you were either Donny or David.

Afternoon all!
Quickly popping in to send new year wishes to each and every one of you...

I’m not sure what to make of this new year - I’m ‘supposed’ to be getting back to some kind of normal (haha), at the same time I woke up to hear the news that my Dads cancer is causing pain that is increasingly poorly controlled (he has prostrate cancer with spine mets), and he spent NYE having emergency scans and oncology appointments...

I’m thinking of each and every one of you here on the thread... you are an exceptional bunch of people and you are all in my thoughts today, and every day...

Mrs I was sent home from my mastectomy with implant recon with codeine, naproxen and paracetamol. I set an alarm (actually my partner did) so that I’d take them evenly spaced for the first week or so, which meant I never allowed the pain to become bad. It was very manageable.

Anyhow I’m off out for a walk in the sunshine - my partner leaves for his ‘other home’ (and work - he is a college prof) in the US tomorrow - so I’m bracing myself for being alone for the first time since this all started... and I promised myself I’d start my tamoxifen too...

all Xx