Cancer support thread #73 - come in, we're here for you.

[Trumpton]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is HERE

Current members, please do introduce yourselves smile

Hi all,

Thanks for thinking of me. I got out of surgery last night and was discharged yesterday evening and I'm staying at my cousins for a week. It went well I'm in a bit of pain, but I've lots of pain killers. My boyfriend and cousin were with me and I'm so grateful they were. I know my boyfriend hasn't been coping well and kinda buried his head in the sand. Im just happy they were both there supporting me as I refused my mum to come over. On,y because I needed my little with her. I wouldn't have coped otherwise.

I'm drinking like a fish and seeing very 30 mins a lovely shade of blue still 😂 I'm hardly eating anything, but I force fed myself some toast last night. I'm back at the hospital next Tuesday for the results so that's quick. I'm laying in bed as I haven't really slept and my god my mouth feels like the dryness will never leave!

Hope everyone is ok sorry to hear about some of you aren't having a good time. A few of you have sent me PM's but I'm on an iPad so it doesn't give me the option to read the, unless anyone knows how to? I'm not ignoring you I promise.

Love to you all xxx

*my little one sorry for the typos not got my glasses on and can't type for the life of me lol

For messages try top right corner of screen and tap on “my mumsnet “
A drop down menu should appear . Tap on “my messages “

@Nonotmenori good that all went to plan and you are tucked up in bed being looked after. Keep taking the full dose of painkillers as long as you need to.

Glad all went to plan @Nonotmenori
Thanks for your support everyone...complaining and stamping my feet really loudly has obviously had some impact. I have an appointment with the surgeon today. Hopefully it is moving forward.

@Imstinkyeddieddie how are things going? Have you had your appointment? X

@Trumpton Just tried it, but it's not working when it opens up in safari I'll use a laptop when I get a chance

@Hippiechick162 Good luck. Hope they sort it for you. Keeping everything crossed for you.

@Skap Thank you. I'm taking them. Just had half a bath and baby wipes under my arms. Desperate for a proper shower. Thank God I shaved and washed my hair before surgery lol

Update - I’ve been for my blood test.
My genetic counsellor rang and confirmed I have Lynch Syndrome - PMS2
I will see her in 3 weeks to discuss informing our children, my brother, cousins etc.
The ripples spread so far and wide.
I’m going to try and sell it as it’s positive for them, as they will all receive screening/colonoscopies now for the rest of their lives, ensuring they never get cancer.
Think they’ll see it that way? Unlikely but has to be done.
I’m feeling pretty crap at the moment x

Got a date! 27th February. Got a million and 1 appointments before hand though because they're going to check the other breast because apparently invasive lobular cancer does not always show on a mammogram. If they find it they're going to do double mastectomy. All care moved across to new hospital so no more dealing with the cockwomble! Feel like I can breathe now because I know what's happening.

@Borntobeamum sell away it can only be a positive if it protects them. Hope you have plenty of support and sending much love x

Great news hippie chick. So good to get that sense that things are moving forward positively x

So pleased it all went smoothly nonotmemori. Plenty of rest for you now and chilling on the sofa x

@Nonotmenori glad everything went to plan and hope you manage to get some rest tonight.

that is great news @Hippiechick162 and good that you don’t have to deal with that stupid hospital again.

@Borntobeamum it’s definitely a good way to look at it.
Did they give you any new info over the phone or were they just confirming what you already knew?

Thanks @Squiffy01 @peaceanddove xx

@Hippiechick162 yay so happy for you. Gonna keep all crossed for you xx

Does anyone know if I can take off these compression socks? They're been in over 30 hours now and are annoying me. I can't remember what the nurse said!

Nonotmenori- if you are up and about, you can take them off.

@BitOfFun yay thank you. Just taken them off now they're imprinted on my skin lol

Hey all,
A quick update from me. I saw the oncologist yesterday and have been started on meds to hopefully improve my heart function whilst I have a break from the herceptin which has caused the problem with my previously healthy ticker!
I'll be having another echo in 6 weeks to hopefully show some improvement and enable me to restart the herceptin. I'll probably have to stay on the heart meds until I finish the herceptin but he said the heart issues almost always reverse once the herceptin is stopped. Fingers crossed I'm in that group. Ive been unlucky to be amongst the small number of people who get this problem.

Hoping this won't prevent me going on the 2 short hols I've got planned in May and June. At the moment getting on a plane would not be advisable owing to reduced cabin oxygen combined with reduced output from my heart.

I also plucked up the courage to ask about my lumpy scar which has been giving me The Fear since before Christmas. He said it was most likely a small seroma caused by the radiotherapy which was concentrated in that area.....so phew!

Hug for everyone at the Patience Inn. I could do with a little lie down on one of the comfy sofas to be honest. Feel exhausted with the stress of this week, which has coincided with my return to work. Fortunately I'm not expected to be doing very much at the moment as am having a graduated return thank goodness

WTF. So glad to hear that they have a solution for you and that the lumpy scar is not a problem. Can I ask what they have given you for the heart function problem? I am seeing the cardiologist next week for the same reason. MY heart function has been fluctuating and the nurses are now concerned so I have to get checked before the next Herceptin. I was worried that they would just call an end to it so it is good news that they don't just do that.

I hope it wont interfere with your planned trips. You deserve those.

@WTF99 well that's encouraging news. Bad that you've got the heart problem but good that it's temporary and you should get back on the Herceptin. I'll join you on that comfy sofa and order a coffee as I'm currently in the waiting room for my radiotherapy and they are running an hour late.
The Fear seems to be something we are all going to have to get used to

Thanks for comments both. Yes...The Fear gives you the shudders doesn't it.

I really hope I can do those hols. One of them is my postponed 60th birthday trip from last year with my daughter. I was in the middle of chemo and spent that landmark in bed for half the day. I haven't said anything yet to my daughter but will have to as she might have to get a provisional plan B in place as we have flights booked.

meercat the meds are ramipril 1.25mg for 7 days with a blood test on day 6 to check kidney function is not affected then increase to 2.5mg if all is well. I've got a month's supply initially and a review with the oncologist in the middle of week 4.
Hope all goes well for you.

@WTF99 How are you getting on with the rami tablets? I found they made me cough so much.

hippiechick
I've namechanged :)
Thank you for asking x
Glad you got your date. What a horrible situation for you wrt the 2 hospitals...
I've actually had 3 appts since I last posted...
My "routine appt" turned out to be a an emergency 2 week one. Another scan.
Then I got another appt which I was told was routine clinic appt - got that in 2 weeks too.
Went last week and had another scan and an ultrasound.
Dr has no idea what the issue is. One lesion could be a bleed behind my eye.
So I'm back next weds for a fluerescin angiogram which will show the blood vessels behind my eye.
My LE vision is still dreadful.
So no further on really.
Hope everyone else is doing ok x

Nonotmenori I don't know yet as only just started them but onc said cough was a possible side effect and that there was an alternative meds if that got too troublesome. Did you stick with the ramipril? Was it useful?

@WTF99 No I got them changed. The cough kept me up all night long. I've been on candesartan the last few years with no side effects that I've noticed.

Got my first post surgery appointment next Friday. Can't believe I've to wait this long to have bandages off. I'm ready for them to be off now! So itchy and I want a proper shower 😭😭

Did anyone take them off and replace them themselves?

Had my rigid cystoscopy under GA last Tuesday and came home the same day to be glued to the loo for every 15 minutes day and night since then. Was in pain on the 1st day but that has eased off.

Now waiting for results and plans for the next few years monitoring as even if there is no sign of the cancer now it is likely to return.

@Nonotmenori my dressing was in two layers, a pressure dressing on top which I was told to take off after 48 hours and a lighter one underneath. I had to go back after a week for it to be changed. I wouldn't dare take it off myself, if you are desperate I would ring BCN for advice. Also stockings, I was told keep them on until I was back to normal levels of activity. I bought some spares so I could wash them.

@digerd oh that sounds nasty, are you taking anything for it?

@yoikes hopefully they'll figure it out soon. Does that mean it's not the original cancer they thought? I'll keep thinking about you xx

@skap and @Nonotmenori how're you feeling? I've got a ct scan next week to locate the blood supply ready for the DIEP. Feel like it's all moving now xxx