Cancer support thread #82

[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

@AGreatUsername I'm really sorry to hear your update and it's not stupid to hope it wasn't cancer, I was the same before my diagnosis and knew my CA125 was 1115. I remember feeling such shock and disbelief as cancer is something that happens to other people right? My OC is high grade serous and my understanding is that the high grade cells grow faster than the low grade cells. I honestly didn't find the debulking surgery too bad even though I was absolutely terrified having never had a GA before. I asked for an epidural as well as the GA which the anaesthetists were keen on anyway, this was taken out the following day as it blocked and I had a couple of shots of morphine with the IV paracetamol that second day. 48 hours after surgery I was just on 2 tablets of paracetamol 4 times a day which I found astonishing, I'm the least brave person I know. The worst thing was the intestinal wind (I didn't have any bowel involvement but this is normal with abdominal surgery) which the lady in the next bed gave me some peppermint oil to put in hot water for. This worked brilliantly so take some of this with you if you can (I think you can buy it on Amazon) as they didn't have any drugs on the ward for this which I found odd. I stayed 4 nights but they wanted to discharge me after 3.

@MrsWooster I so hear you on disliking the 'battle' references but most of the time it feels this way to me. I'd like to have a serene zen with 'cancer lives with me, I don't live with cancer' but most of the time I'm so exhausted it's impossible to believe this mindset. Last week, I missed 4 calls from the onc for my phone review as there was something wrong with my phone and I was weeping and wailing to DD saying how I didn't want to do any of this anymore.

@mowly77 why do they make everything so hard? Being my own secretary has been one of the worst parts for me over the last two years. Being made to feel so unreasonable for wanting to have tests, scans and appointments completed in a timely manner appropriate to my condition has been just so degrading and exhausting. People talk a lot about patient dignity and for me this has been having to justify and advocate for myself in situations where my 'request' for care has been made to seem so trivial. Thinking of you at 11am Xx.

Top has now reached the top! I did a mammoth 14 hour marathon stint up to the Shetlands to get in before bad weather. Now I’m relaxing and exploring coffee shops while DH pedals about. 1000 miles sailed and it will be homeward from now on. Our fundraising for the green cancer charity is over £3000 so far which is amazing. It occurred to me just now that one of the bonuses of the trip is I won’t be known at Top That Had Cancer but as Top that Sailed Round Britain.
For those new to the thread welcome, two years ago I was waiting for my 2ww clinic appointment in cheerful denial. Since then I’ve had the BC kitchen sink regime and am now “just” on exemestane and Zolendronic acid. My joints are awful and I have mild lymphoedema in my right arm but I’ve decided to ignore all that and just crack on . If the cancer comes back I don’t want to regret the things I didn’t do.

@Podgedodge sorry about your DF. I lost mine last May quite suddenly but was able to see him when I took DM in a wheelchair to the hospital ward. Then he collapsed at home and I was able to say my goodbyes while waiting for the undertaker. My siblings missed out on all that. It was a comfort. Sending hugs.

@Billandben444 welcome from a fellow pensioner and feel free to whinge away if it helps! . I’ve found my adult DC have been wonderful supporting me and I’m sure your will be too. It’s tough getting through treatment but they will tailor it to your general fitness level.

@AGreatUsername with the diagnosis comes a sort of weird relief that the truth is out and the uncertainty has gone. Hopefully knowing the plan and being able to prepare will keep you busy and distracted. It’s all too terrifying to take in at once. Be kind to yourself.

To everybody else, @MrsPnut @MothralovesGojira @mowly77 @MrsWooster @Fantasea @HauntedDishcloth @Stomacharmeleon @Silkierabbit And those further up the thread I’ve left out, sending best wishes. I’m amazed how many live gigs you lot get to. It’s what makes memories and stops life being all about cancer.

Now for an expedition to find some cake. I haven’t had a day without thermal underwear since leaving home and today will be the same. What happened to summer?
Love to all
Top

@AGreatUsername

Not silly to hope. I've held off commenting till now because I was one of the lucky ones with a 23 cm ovarian tumour which turned out to be a Borderline. The other side of the border from Low Grade. i.e. slightly abnormal cells, not malignant, but, in the vast majority of cases, 'non-invasive and cured by surgery'.

Don't know whether you like researching, but the world expert on Low Grade is David Gershenson at Austin, Texas. The Marsden have collaborated with him on treatment trials. The higher the grade, the greedier the cancer. They just gobble up the chemo poison. They have to try something a bit different with Low Grade or they'd kill too many healthy cells before it would have much effect. It's 8 years since I read up about it, and things have probably moved on a lot in the interim.

I had a full debulking at St Thomas', vertical incision, and was v surprised at how quickly I recovered. Only 3 nights in hospital and quite capable of looking after myself. Just a fentanyl epidural for immediate post-op and then paracetamol and ibuprofen at regular intervals as long as I needed it. And I was 72 at the time. I think St Thomas' are against opioids as a rule. As pp have said, it's the trapped wind that I remember. I recommend glycerine suppositories for post-op constipation.

But it does take time to get your stamina back. Never sit when you can lie down. And follow the rules about not lifting, hoovering etc. They mean it when they say you shouldn't lift more than half a kettle of water. Remember it takes longer for internal wounds to heal and while you are recovering, your back muscles are all that's keeping you upright.

With any luck, you'll feel a lot better once the cause of your ascites is removed and that will help lift your spirits.

@TopOfTheCliff

Congratulations! Have you read the Shetland books by Ann Cleeve? I do like a crime series with a sense of place. In another life, I went to the Navajo Res because of Tony Hillerman and Fargo because of the film.

@Podgedodge

So sorry to hear about your Dad. What a year. 'Outrageous fortune' and then some.

@Thymeout I was walking past a pretty cottage when I heard a tour guide telling the Cruise ship passengers it was where Jimmy Perez lives. One lady said “ That’s all I came here for I can go home now!”

@Fantasea and @Thymeout thanks so much for the detailed replies regarding OC. It’s really nice to hear from people who have gone through what I am just about to. I will definitely look at that research too, I like being in the know but Google is a scary place.

I’ve had a call from my SCN today to say a space for surgery has opened up on the 14th, so a week earlier. I’m really pleased that the wait is slightly shorter! Although I may be on my (last ever) period by then, I guess that won’t matter?

I had my colonoscopy a week past Wed when they discovered a mass & they said they were very worried about it.
I went for an MRI & a CT scan last Friday.
Today the specialist nurse rang & said they didn't get my results back in time for yesterday's meeting but my case will definitely be discussed at next Wednesday's meeting.
He then added that unfortunately with the 2 bank holidays I won't get to see anyone & find out what's going on till the following week.
I'm so bad at waiting for anything I had to fight back tears. I took the call at work, may have been a different story if I'd been at home. It just seems so far away.
My partner says if they didn't rush the results through it may not be the bad news I'm dreading. I think he's trying to cheer me up, but could he be right?
I teach 5 & 6yr olds so usually I have no time to think about me during the day. But it's half term next week & the days will drag. I have never wished a holiday away before!
How do I cope with the waiting?

@HelpIcantfindaname I’m really sorry you haven’t had any results. The waiting is just awful isn’t it. So so stressful. In your shoes I’d probably ask if the doctor could call me next Wednesday afternoon as you are struggling to cope with the stress and waiting another week will impact heavily. It might not get any joy but worth an ask for sure!

I didn’t cope well with the waiting I have to say. The last 4 weeks since my first scan have been just torture, I’ve never felt such mental strain. But all I can do is keep telling myself that I’m on the way now, on the road to getting a fix and a few days of waiting won’t hurt me. It doesn’t work, but, you know, I still try.

@AGreatUsername oh good news, 7 fewer days to wait! No, it doesn't matter at all if you're on your period. By the time I had surgery I had been bleeding continuously in varying amounts for weeks on end and it was no problem. They gave me some paper knickers to wear for the surgery and I had a pad in that, not the most dignified thing now I think about it but it was a bit like giving birth, I honestly didn't care.

@HelpIcantfindaname

I'm so sorry you're in this position. First of all, there is medication that will help. When I'm anxious, I simply can't eat. My GP had no problem in prescribing a low dose of antidepressants - fluoxetine or paroxetine, in my case - and diazepam, as and when needed, until they had had time to kick in. They don't make me feel muzzy or spaced out. Just closer to normal.

Everyone seems to have a different path to colon cancer diagnosis. Mine was discovered by accident through a routine monitoring CT scan for a previous ovarian issue. And now, with the covid backlog and new cases among the medics, it's impossible to speculate. That shouldn't mean that you have to remain totally in the dark for so long about what they know so far.

It's not just (!) your mental state. Whatever is there will need to come out and, as a teacher, it's perfectly reasonable to want to be able to warn your school about the possibility of needing supply while you're recovering. If the CNS shuts you down, I'd be ringing your consultant's secretary and asking for a phone call. My GP has been helpful in the past and has rung the hospital herself to speed things up.

@TopOfTheCliff

One thing about tourists, as a general rule, where there are tourists, there will be cake. Hope you found some.

@HelpIcantfindaname Definitely ring your consultant’s secretary. Waiting is the worst and I’m so sorry! I think it was @TopOfTheCliff ( 😃who is at the top of Britain & I’m so impressed! ) who said get them on your side, be persistent yet charming.

I had similar wait with them not getting test results in time for weekly meet, so maddening frustrating. I went mental. I knew I had cancer mets because was in Ambulatory Care & they did CT scan. & told me then & there which wasn’t great let’s be honest. I was on my own. But had to wait so long to get on treatment plan because they needed exact profile … & all the missed meetings aghhhh. Their meeting was on a Thursday & consultant did call me on the Friday. — & then said have a nice weekend, the utter bellend.

@AGreatUsername
@Acinonyx2@Thymeout @mowly77

Thank you for your replies & advice.

(sorry, I've accidentally tagged Acinonyx2 & I can't delete it.)

I called my gp to ask if she could hurry them along. She said best thing is to ring the consultant's secretary. She gave me the name of the consultant who sent her the letter, but that's not the hospital I'm now at. They moved my care to a closer one. (I only live a few miles from both the large hospitals so I could easily have gone to either.) I will ring that guy's secretary next week & politely pester.

The gp said from the letter they sent her they do seem to think its cancer, but they can't tell me till they have all the results.

When I told her I know our Head needs to be sorting next year's classes she suggested telling him I probably won't be there much for the first part of the year.

She was lovely but speaking to her always worries me more as she seems to know its not gona be good news.

I've been getting lots of pains in my back. They are worse after lying down, so it's probably just a bad back, but every new niggle is a worry.

Thank you again for your replies.

HelpIcantfindaname Sorry to hear you are waiting and feedback is negative. Its a really hard time waiting, the only thing I found helped was to go into lalala land and pretend its not happening and distract myself with anything like escapist TV, music, planning work on house, anything really.

A lovely cancer charity has given us a week in a holiday cottage on the Cornish coast in July, very lucky. Not much planned for half term, just chemo and a day out on jet boat to see seals as remembered have Avios points left I used up. DD has done 2 weeks of gcse exams and now have a breather for a week then 3 more weeks. Doing ehcp for DS still. Had cleaner in today for a second one off clean, can really recommend that for chemo time especially if you have kids and pets like us. Got 2 more silkies on Friday and all chooks are now outside. Tried to introduce Maine Coon with rabbit today but cat was scared of rabbit, same as last cat, he is very bouncy and tries to jump on cats. The cleaners loved the rabbit though as he was happy to be stroked but the kitten was too scared.

Your adventure looks wonderful Top I wish I could see more puffins this half term but think will just be the seals.

Sorry its posted 4 times.

@Silkierabbit thank you for your message.
I hope you enjoy your day on the boat, & your holiday in Cornwall.

We don't have much planned for half term, I didnt want to make plans incase I got a consultant appointment

Although we are going to do to our wedding notices tomorrow. The wedding is booked for August Bank hol weekend, but we may bring it forward, depending on the news I get.

Congratulations on your wedding Help Its probably worth mentioning to the team to see what they think re wedding date if it is cancer. They can sometimes work round dates or it might be better to bring it forward if that is an option. But hopefully won't come to that.

With half term, I would just go somewhere if you can, you often have to grab things at short notice with cancer when you can as you are always waiting for the next appointment but if they aren't discussing until Wednesday and its a Bank Holiday on Thursday and Friday any time in half time will be fine to book something.

Just got my dexa bone scan results back - osteopenia but that is better than I expected as been told from CT about a bony island thing and weak bones and used to get lots of bone pain. Thankfully gone now breast cancer is out and with vit D plus calcium.

Evening everyone, i posted on here a good few weeks ago when what dr's thought was a fibroid was a mass on my colon. My biopsy was clear of anything sinister and i had surgery 3wks ago to remove the mass. Just had my appointment earlier with the surgeon to discuss the results from the mass and it did infact have cancer inside it. Literally in a state of panic right now. At the moment it hasn't spread anywhere and the whole mass has been removed so they will just keep an eye on me with bloods and scans. I feel like i should be happy because i'm in a better position that others but i'm just not. I can't shake the fear

Sorry to hear it was cancer AFB but glad surgery got it out. I think its normal to be scared and down when its cancer and fear it coming back as noone would choose to have cancer and you have lost the feeling of it will never happen to me. If it would help you can get a second opinion on nhs if you are worried or if you have the money you can go private for a consultation, sometimes discussing it in more detail helps. My nhs ones were 5 minutes one question answered out as so busy though if you are already happy wuth the treatment plan and its more anxiety Macmillan offer counselling via bupa or gp can do meds. And keep talking to us if it helps, I also sometimes have gone on groups for my cancer when I need something more specialist. Though sometimes thinking about cancer a lot makes you worse and distraction is best. Its a lot to take in but the good thing is the cancer is out.

@Silkierabbit i just feel like i'm in a living nightmare, its all just surreal. I know no one knows what their future holds but i feel like this couldn't be any more true for me right now. My surgeon was really good tbf and answered all my questions but sometimes i feel like do they just sugar coat things and tell you what you want to hear. I think i may have to speak to my gp about meds. I will look into the counselling, thank you

@AFB2022
I am glad to hear your mass is gone, sorry it turned out to be cancerous, but its great its all gone. I do understand the terror though.
Im waiting for results of biopsies & scans after a mass was found during my colonoscopy. I've been fearing the worst, but your story has given me hope.
I hope you can get some counselling or/& meds to help with the anxiety.

I posted on here a little while back - breast cancer, lumpectomy to come, scary but manageable. Well, it's progressed to a lump of 44mm and another smaller one hiding behind it (cheeky little imp, eh?) so it's a mastectomy and lymph nodes on the 11th June. As an outpatient (what!!) and home with drain the same day then back 2 weeks later to see what's what. I've got a very special family holiday booked end July to celebrate my 70th and I really really want to go so that's my incentive. Some of you on here are having a tough time and are being so brave - my heart goes out to you all, sending a huge hug 🤗🤗🤗