Cancer Support thread #78 - Newbies welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

@Acinonyx2 and @Lizdeflores thank you both. It feels quite barbaric to me. I had had visions of having a lovely pre-med so I would be floating to theatre on a trolley. Have pre-meds been scrapped then?

@Liz what is 'a sip'. Do you mean gas? I am in such a tizzy about everything.

@FizzyOrange Yeah, I walked to my operations. It took me by surprise, too - I'd been envisioning a bed. The first time, a lovely man held my hand all the way down to reassure me. Good to remember to take slippers with you so you're not clomping around in outdoor shoes and a gown!

There is a brilliant analogy on the cancerpal.co.uk site from January 2019 called What it’s like to Receive a Cancer diagnosis. It’s about opening your fridge one day looking for breakfast and finding a Mountain Lion in there. A frigging huge mountain lion that wants to kill you. So you have to drop everything and start running as fast as you can to the top of the mountain where there is a bear that might be able to kill the lion for you. It’s a brilliant metaphor and explains so much of the carnage and collateral damage we experience. I can’t post the link directly but I am sure a bit of (safe) Googling will find it.
I had visitors today who were very upbeat and praised me to the hilt about how fantastic I have been and how well I am doing so for once I listened and let myself feel pride and satisfaction in my achievement so far. No doubt there will be another setback of some sort but tonight I am a Brave Cancer Survivor!

Evening all. Im back after huge operation. over a week in hospital which was horrendous, no sleep, no peace,all the prodding and poking and noise. However the medical staff and especially the surgeon were brilliant. I feel surprisingly well considering someones been hoovering out my insides and kneading my bowels. Stomach is really bloated though still looks as if the tumours are in there, and despite no food for over 6 days no weight loss, cant believe it , I was banking on that at least !

Sorry Fizzy I didn't mean to add to your worry. I was in a bit of a fluster when I got to theatre and the anaesthetist gave me some of the anaesthetic early (through my cannula). He described it as giving me a bit of a 'sip' to help calm my nerves it worked because after that I talked at length about Lego and I swear I saw a unicorn flying over the centre of Bristol!.

@thereisonlyoneofme so pleased you are safely home, we have been worried about you. I am going in for similar surgery on Tuesday next week and I am so frightened. I usually don't sleep well in hospital either and it is very wearing. Can I ask, how was your pain afterwards? They have offered me an epidural in addition to a GA.

@Lizdeflores don't be silly, you haven't added to my worry! I hope I get a sip early too, that sounds lovely.

Fizzy, I had the major debulking done which consisted of a long line central incision from just under my boobs down to my mons. It had to be that big for them to be able to have a good rake around and remove my uterus, Fallopian tubes, appendix, lymph nodes, ovaries, omentum and my 6 month old baby sized cyst.

To be honest, despite the mental and emotional turmoil I was in I found the actual operation absolutely ok and the worst/most painful part of it was the coughing I experienced for a few days after the surgery. It wasn’t a lot of coughing though and I’d hold a pillow to my tummy to help with the discomfort.

The day after the OP I walked to the toilet and after I did it once I then did it there on in except for a few times during the night when I had to just pee in my adult pants as my problems with my pelvic floor and being groggy from sleep meant I couldn’t have safely gotten to to the loo. It wasn’t a big deal and I was soon sorted out.

I had the epidural for pain relief but it didn’t work as it should have and in the end it was only my big toe that felt the benefit of it but a few days of intravenous pain meds got me through things and I think by early morning on day 4 I was on the little bottles of panadol they run through the drip. I was told by my consultant ‘they didn’t do pain’ in the hospital I was in and they were true to their word.

On day 5 I went home and I was more than ready for it. We’d arranged for me to sleep in a downstairs bedroom and my sons care team had put together a system so they could do any nursing I required but when I got home I was able to get upstairs to my bedroom and the only help I needed was them giving me my daily injection. Sorry, I did also have help a few times in the shower but I was helped by whichever of my girls were here visiting at the time. I was a bit scared I’d get dizzy and go crashing through my glass shower - my imagination can really do a number on me at times.

About 5 days after I got home I went out for a family breakfast that involved a wee walk from the car to the restaurant and I then remained as active as I could whilst getting enough rest as well. If I popped out in the morning I’d then spend the rest of the day in bed etc.

To be honest I was never afraid of the operation but I suspect it’s because I wasn’t in a good way mentally. I can recall taking the deepest breaths possible on the gas mask as all I wanted was to be fast asleep and spared a few hours of my mind which at the time was torturing me.

Sorry, just to say that I didn’t walk to my surgery. I was wheeled through the hospital on a bed and my eldest daughter was with me. I can recall attracting a lot of attention as a European woman being wheeled through the hospital but it was very nice attention and people were wishing me well and telling my daughter they’d pray for me.

It was a bit strange in theatre as you’re awake so you can follow the instructions they give you when inserting the epidural but it didn’t feel as strange as one of my surgeons bring a friend of my daughters and there she was getting ready to rummage around in my belly.

@thereisonlyoneofme

It’s lovely to see you back. I’ve been thinking of you and I hope you’re feeling even a wee bit better each day.

@balkanscot

Hi there, I’m strangely excited about finally being able to face exactly what was/is going on with me. It’s a big step forward and not just because I did actually spend hospital appts with my fingers stuck in my ears. It’s something we now laugh about as a family as well as laughing about the day I was going home after surgery and when crossing the car park I suddenly and unexpectedly broke wind really loudly. In fact it was so loud a lady walking alongside me and my daughter actually jumped and the lady with her burst out laughing. To be honest I nearly jumped myself it was such a shock so I can’t say I blame her.

I don’t have anything to contribute to the thread by way of treatments as I’ve not needed any due to my early staging but I can help with people who’s mind reacted to their situation in such a way that their mental health was seriously affected.

@thereisonlyoneofme great to hear from you. How is your situation at home now wrt care and support?

@Anne1958 I laughed out loud at your breaking wind story and had to explain to dh why I was laughing! I have had what I call 'chemo wind' which can be somewhat copious and is also qualitatively different - I would describe it as 'flabby'.

@TopOfTheCliff Indeed you are our official cancer warrior I bet you were a great GP. Wish you could come and sort all our drains......

thereisonlyoneofme good to hear from you. How are you feeling today?

Acinonynx omg the chemo wind. It is the bane of my life. Luckily I have a dog so I can blame a lot of it on him.

Good luck to those of you steeling yourself for surgery. If it's any help at all, I found listening to meditation recordings just before I had to go in made a huge difference when I was panicking about my biopsy. I used one from this site www.tarabrach.com/ and just lay there with my headphones on until the last possible moment. It worked a treat - I was able to be completely calm while they did it (needle into my sternum while awake) when the previous day I'd had a full blown panic attack.

I'd definitely recommend taking a pair of headphones into hospital in any case - really useful to be able to choose music, podcast or meditation and shut out the hospital noise. DH lent me a some that pair via Bluetooth to my phone which works really well.

Oh yes, definitely take headphones if you can. I have a little pair that came with my phone and they were so handy.
I was nervous pre surgery for sure, especially the first op (even though I know breast/axillary surgery is not too major compared to some!), but there is something I found quite soothing about going under with the GA. And coming round and getting the nice buzzy drugs.

I prefer walking to the theatre than being wheeled in on the bed. It feels like I have some sort control over it right until I get to lie down for the anaesthetic.

Just re-reading my first sentence and using the word prefer, feels like I am choosing between pasta and pizza! I so wish I don’t have to do any of this shit for a long time to come.

Glad you are home safe @thereisonlyoneofme

I am packing for my operation next week, I have an appointment tomorrow morning to have a magseed inserted by ultrasound and my Covid test is at lunchtime on Sunday. In between all of that, my car needs to go in for 2 rear tyres and the suspension coils changing and I need to go and do a home check for a dog rescue I volunteer for.

The thing I am struggling most with is finding a surgical bra that fits before surgery. I am having a reduction both sides but I can’t find anything that goes above a GG or H and I really don’t want to have to squeeze into a too small bra. The nurses have given me a couple to try but I have to do so upside down to check the back size.

"@FizzyOrange"
Hi, well the actual surgery seemed a breeze as I wasnt aware of it. I walked to the theatre,was given an epidural and woke up 8 hours later on the ward! I had very little pain, didnt need a morphine pump, but was on an IV drip painkiller, which might have been morphine based, then on IV paracetamol four hourly. I did feel very woozy and wasnt allowed out of bed for a few days, had a catheter and IV fluids, no food.Th worst part of the whole business was the disruption and noise on the ward especially at night, there was no peace. It was also very hot the heating was on, the sun was shining and all the doros had to be closed because of covid restrictions.Ask for a sleeping pill, I would have gone mad without it and I still only got partial sleep. Take a sleep mask, I found ear plugs useless.
Every one of the staff I encountered were wonderful, even though they changed every day. They were nearly all foreign nurses and what we would do without them I dread to think. I feel more positive now than I have for months as told inoperable as just basically pulled up the drawbridge, I might not have any longer but it will hopefully be more comfortable without the huge tumours inside. It was so quiet last night at home I couldnt sleep! Had to take a pill again.
I wish you all the best for your op.

"@FizzyOrange"sorry bold fail above

"Acinonyx" There has been no aftercare ! Just discharged home. No stitches to come out, dissolvable and glue. Was expecting some equipment to help me use the loo and get out of bed but nothing, no phone calls, so Im getting on with it. I was quite sceptical anyway that I would get any help

Acinonyx FizzyOrange

More bold fails, must still be under the influence

Morning all

@thereisonlyoneofme so good to hear from you, take time to rest after a traumatic 6 days.

@BadEyeBri sorry to hear about your sickness, my first chemo was the same but I changed my meds and it helped a lot.

@bontopia hope your recovery is speedy and the results are good. Yes to the puppy, wouldn't be without my doggy that DH didn't want over a year ago and soon became his best Buddy.

@Acinonyx2 big hug to you lovely. My girls 17 and 14 are positive and upbeat and DH is like, I can do it as I have no choice. My FIL is the one who phones to check up after each treatment.

@Babamamananarama my PICC was ok for a couple of weeks after being painful due to the metal barb digging in. It now hurts again every time I bend my arm but having it flushed this afternoon so hoping it will be ok again.

@Bloodybridget last chemo eh? Fab, time is really flying. I think I will be slightly lost when I don't have hospital visits.

@balkanscot can't they get you in before May? Please rant and chat anytime. Big hug.

@Shallysally hope you get your results very soon. Waiting is the worst.

@AlbertCampion when do you get your CT results? I was told that chemo blasts everything in your body so I assume cancer doesn't stand a chance during chemo.

@Mckmck123 will be thinking of you tomorrow.

So much to catch up on. Have a lovely cleaner so feel much happier about my house now. Have a flush this afternoon then flush and bloods on Easter Monday and first of 3 EC chemo's which are 3 weekly and likely to make me sick. Then it will CT's, MRI's, mammogram's and ultrasound's and a meeting with the oncology Dr to see if a need an operation before radiotherapy. Cannot wait to feel normal and try and lose all my weight and start running again. Couch to 5k for the 10th time. 😭

👋 to @MrsPnut*,@Lubballoo, @Anne1958, @FizzyOrange, @Lizdeflores, @TopOfTheCliff, @backformore, @Alittlewornout, @HerbalRefreshment,*@Percivalthebabyspider, @HauntedDishcloth, @Miava, @InOtterNews (hoping)

Laters!

HC x

I'm so sorry I've not replied or contributed to the conversation. I will make that up at some point soon.

I'm on day 6 of quite a debilitating headache (although not a migraine). I've tried paracetamol, ibuprofen, co-codamol, codine and nothing makes a jot of difference. Does anyone have any suggestions please? I'm desperate. The nurse thinks it might be due to the bone marrow injection the day after chemo so they'll look into that for the next round but I can't believe nothing gets rid of it.

Sorry to turn up asking for help rather than contributing anything meaningful. I'm feeling pretty down to with the headache and stupid negative thoughts at the moment x

Hello @HumphreysCorner, that sounds good, especially the cleaner! (I'm willfully ignoring the mess here!). I did find EC made me feel very sick after the first dose, but just for a few hours and as soon as they got the meds right it was ok. I am just starting up with jogging again. My post surgery leaflet says leave it 6 weeks but the lovely surgeon said I could start when ever I wanted so I've started after 3! I'm doing 30s walking, 30 "jogging" for 20 mins in total, my plan is 3x a week for now. I've done 2 sessions and already feel much better for it, in my head at least. My newly menopausal joints don't thank me! My jogging pace is slower than lots of people walk so I'm confident I'm not over doing things. In other news I have developed cording which is stopping me straightening my arm and is very sore right down to my wrist and thumb, so waiting for a call from the hospital physio to see what can be done. My shoulder movement is ok at least.

10 am I got a request for a video meeting for a small job that doesn't know my situation. At the time I was still in my dressing gown and beannie cap. So I hopped in the shower, put on some work clothes and my wig. I even got out my new eyebrow pencil. I have a few eyebrow hairs but I thought I'd just add a bit of shadow to make me look less surprised.

I was a bit anxious lest my cunning normal-person-without-cancer disguise should be rumbled but I think I got away with it!