Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

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 iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

@daisypond
I will wait with you .

To paraphrase Joyce Grenfell

Weep if you must,
“Waiting “ is hell.
But life goes on,
So........ sing as well.

@Jourdain11

I know you mentioned wig services being unavailable on your other thread.

I have a wig ( unworn) I would be happy to send you .

I found that clipping my hair and wearing a fine selection of hats was the way to go for me .

I will see if I can find a photo .

No worries if you don’t want it , just thought I would offer .
Very best wishes .

I got a telephone call yesterday. I forgot to ask a lot of stuff. But I guess I can ask that when I go into the hospital next.

The lady did say I won't be having a hysterectomy, I will be starting chemo and radiotherapy. I'll get a letter shortly to confirm.

Hi, it's been a while. Sorry, I've been getting my head around everything. Got a face to face appointment at the Christie next week. I'm not sure what it's for because the woman on the phone couldn't tell me. At least I know the Christie is one of the best! Hope everyone is holding together in this tricky time, remember "this too shall pass" xxx

Just had the best news ever! My surgeon just phoned to say that the lump they removed was all scar tissue - chemo completely destroyed the cancer; lymph nodes are clear! Being referred back to the Christie for radiotherapy, which will be 5 x triple doses, so 5 days of daily treatment instead of 15. Herceptin to continue until January to minimise chances of it coming back.
Can't stop crying! So, so relieved, and so grateful to the NHS for my superb treatment!
He said that the radiotherapy will be rough, due to the triple doses, but to know there's an end in sight is such a relief.

For those waiting for results and at different stages of treatment - you have my best wishes! This group has helped me to get through some very tough days, and I'm sure will support me through the radiotherapy and onwards. Many, many thanks for your help and support!

@Hippiechick162

Well that might answer my question above . You had your operation 2 weeks before me ( in same hospital, with the same surgeon ) so maybe I have another two weeks to wait .
I will be thinking of you x

@Zorgothslugofdoom

Wow ! Best news you could hope for ! Best wishes for your radiotherapy . I feel emotional for you !

Hi to everyone. Have been lurking since January when I got my diagnosis. I’m obviously one of the lucky ones - lumpectomy 12th February with clear margins. Started tamoxifen a month ago and thankfully no side effects yet. I had read about sickness so take mine with breakfast so don’t know if that makes a difference.

Like a few others, was meant to start 15 treatments of radiotherapy this week but have been given rapid radiotherapy instead. Had 2 treatments already without any negative effects and will be finished Friday so less chance of catching anything else equally scary.
Good luck to everyone awaiting results or treatment.

@Trumpton
Thanks for your waiting good wishes and poem.
I’ve just now had my phone appointment for results, which was already a cancellation from an in person appointment for the previous week, cancelled again due to the virus. I’ve now got to go in person next week, which sounds ominous to me, especially as I’m in a hugely virus-hit hospital.

Hi all

It's been an eventful few days. I was rushed to A&E on Saturday morning after having a reaction to some meds. I ended up staying on the cancer ward where I will have my alternate chemo treatments - so it was good to get my bearings, but awful to be even more isolated from the world. They let me home Monday afternoon.

I was back again yesterday for my first chemo cycle (RCHOP). The day itself while long was fine - bit spaced out/light-headed. I was ok until after dinner and then felt like I'd drunk a huge amount of alcohol (without the fun) and felt like I was falling/spinning throughout the night.

I wasn't sure if I could take a sleeping pill, so I didn't and only got a total of 3 hours of sleep. So I am having my first PJ day since this has all started.

Also had a wobble as it was explained to me that I'd have to give myself injections at home over the next 2 weeks - none of my reading mentioned this, why didn't they tell me before (information is that only thing I can control at the moment). I'm also realising that I will only feel worse as I go further along as the inpatient chemo (4 days) will be grueling.

I'm feeling a little brighter now but I have a terribly dry mouth.

Sorry for the ramble...so tired!

Hello all especially the newcomers! Can I share my little bit of good news? I got a phone call first thing this morning from the genetics centre. I'm negative for the BRCA genes. I've been so worried as to the outcome for myself (more surgery) but more importantly for DD - if I was positive then there would be a 50% chance I could pass it onto her. I feel lucky but unlucky right now.

@citybumpkin
Congratulations on the genetic test results. That’s a bit of relief for you.

@citybumpkin That's fantastic news.

Fingers crossed to everyone waiting to hear results.

On 23rd April I will be having my mastectomy and node clearance. My surgeon seems to be in a rush to get it done sooner rather than later (it will be a day short of 4 weeks since my last chemo). She doesn't know which hospital it will be in yet, as the main hospital is struggling with COVID-19 patient numbers at the moment. I also get my PICC line taken out tomorrow. I'll be able to sleep on that arm again.

@barberousbarbara @daisypond One more hurdle... next its radiotherapy then chemo. Today I longed to sit in a pub beer garden, glass of wine, chatting and laughing with friends, enjoying the sunshine. Instead I feel doubly quarantined.

@Zorgothslugofdoom that's awesome news! Congratulations
@citybumpkin that's so good for you. My BRCA Gene tests have all been postponed for now.
@Trumpton so good to hear from you, been thinking about you! Yeah, here's hoping you'll hear soon, May my BCN was saying they were trying to mop up and sort out appointments ASAP xx

Well, I think I have good news. Consultant phoned with results of lumpectomy for my pleomorphic lobular in situ. Much bigger than expected but noninvasive and still regarded as stage 0. I think. Just trying to get in touch with nurse to make sure I’ve understood correctly.

InOtterNews that sounds rough. How are you feeling now? Calmer I hope. Are you any good with needles? (Or will you have to ask for a cohabitant to be trained?)

jourdain11 thinking of you today

@InOtterNews
I had to give myself an injection the night I left hospital and I was in an airport hotel . It was very strange but not as hard as I thought it might be . I had to tell them at reception that I had a bright yellow sharps box to leave in the room as I was flying home !

These new skills we learn !

Back on antibiotics as I have yet another UTI .
Urine gone off for testing , my GP is going to take advice but is thinking of a prophylactic course of low dose antibiotics . Curled up in bed feeling shivery and with a hot water bottle .

@InOtterNews Hiya is it the Filgrastim injections they gave you? I was given this too today, but they gave me the option of sending a nurse to me daily to Inject me. I was going to do this, but decided I've to be a big girl and do it myself that nurse it better off elsewhere rather than wasting time seeing me. I'm injecting them from Saturday 😱

So today I've had a double round of chemo sessions 3&4, a quarterly zoladex injection and the three week chemo injection all today and in one hit. I feel tired and slightly out of it, but so far so good. I've spent the best part of 7 hours in the chemo ward today. They forgot my double dose so I had to wait. So that's two days spent in the hospital. Came in tonight stripped naked at the door and jumped in the shower. Saturday night I had am ambulance called as I couldn't breath well and they thought I was having a potential heart attack. I begged them not to send one, but they refused and I was checked out. All fine bp was thought the roof but no temperature etc so that's good. I'm taking drags for indigestion, rash on the face and sickness. I've had so many injections now I'm like a walking pin cushion! My hairs starting to fall out now and I've got a wig. Might shave my hair off in the next couple of days. I've only scissors and a razor blade so will see how that goes.

How is everyone doing? Stay safe all xx

@Zorgothslugofdoom - that is the best news, congrats! Very happy to see other good news here too and sending good thoughts to everyone struggling.

I need to organise a PET scan in a couple of weeks to make sure all is well, although everyone has told me I can consider myself cancer free and it is generally accepted that nothing could survive my aggressive treatment I have had no scans since I finished radiotherapy last September so it is still a worry.

Happy Easter everyone x

Very very miserable here . UTI is so painful and I need to try and have wee every time I get to sleep .
Just woken from a dream where I desperately needed a wee . Off I went to toilet to rock and moan . Very aware of DH and DD . I might make myself a nest downstairs where I am nearer to to a toilet and further away from them .
It’s the small things that really upset me at the moment .

@Trumpton
How wretched for you. I hope you feel better soon and can get some sleep at some point.

Thank you @daisypond
I decamped downstairs and the pain killers are beginning to kick in .
I will make a fresh hot water bottle and try to doze for a while .
I think this is my 9th lot of antibiotics since August .
Two lots after first two ops . Three lots for a chest infection that would not clear just before I started chemo .
IV antibiotics for another chest infection a couple of weeks in .
Three lots for UTIs that just seem to flare up .
I was never at drs before this !

Sorry you are having such a shit time @Trumpton

@Trumpton I hope you managed to get back to sleep. It seems that once you have one thing, you end up with another. I've got a seroma which is causing me aches and nerve pain. So I'm off to a boob manipulator soon. Just think one day life will be a little easier.

Just awake after 2 hours . Good morning .
Oh I had a blocked chest drain causing a seroma it was not nice ! But the relief when the pressure was eased was lovely .
Thank you for those that kept me company . X