Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

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)

@thereisonlyoneofme

I’m sorry you’ve found yourself in this situation.

I’m almost 63 and had debulking surgery 3 months ago and though I was filleted like a fish the op and the recovery weren’t bad at all. The same couldn’t be said for my mental and emotional health however and I had a breakdown from day one of the nightmare I found myself in. Three months later though I’m doing really well and I’m physically back to normal and the anti depressants/anti anxiety medication I’m on are doing there job to quite an extent though I do get a bit anxious at times when out of my comfort zone.

Previously I thought I was very weak to have reacted the way I did but two very good ovarian cancer forums I’ve now joined have helped me to realize that many people react to the shock of everything the way I did but not everyone feels able to say so as we all have to fit the ‘brave’ stereotype. In fact in many countries in the world anti anxiety medication is routinely prescribed after a diagnosis or suspicion just in case the person finds them self in need of some. They’re not left to struggle through a weekend for example shivering like a leaf through fear, they instead have something to hand and can take it when need be.

My own story is that a 6 month old baby sized ovarian cyst was found during a gynae appt and and 2 weeks later after my debulking surgery I was diagnosed with Stage 1a ovarian cancer. I didn’t need chemotherapy and due to how ill I was mentally at the time I didn’t ask questions and I’ve no idea of the grade or whether it’s low or high serous. That will all come at my first 6 month check up in May though my psychiatrist feels I’m actually able now to go and see my gynae-oncologist and get the answers to questions I now have.

Quite honestly the op was never a problem for me but only because all I could think about was the ‘what if’s’ regarding cancer. In fact I can recall lying on the table taking the biggest breaths possible when I had the gas mask on because all I wanted was mental peace. I quite simply just didn’t want to be awake. The anesthetic was a relief.

I had an epidural put in place for pain relief in theatre and after my surgery I was was in the high dependency unit for 24 hours as routine. I was home lunchtime 4 days after my surgery but I’m fortunate in that I have adult children who looked after me as well as in house nurses/careers who help me take care of my severely disabled son. I was really glad of not having to do my injections myself as I just couldn’t have done it.

Will anyone be able to come in and see you everyday or can you set up a temp bedroom downstairs with a microwave to heat soup up or something.

I live 1000’s of miles from the Uk but if I lived close to anyone needing help after surgery I wouldn’t hesitate to help them. I hope you can get something sorted out.

Bitoffun, I’m very sorry. Xxx

Hello everyone I have my first oncologist appointment on Friday to talk about me starting chemo, is there any tips on what questions I need to ask.
I've been told I have to go in on my own. Will be taking a pad and pen because knowing me I'll forget my own name.

Also I'll give you a laugh. Sent DH food shopping for the first time on his own. We normally have a home delivery but couldn't get a slot.
Gave DH a list and also said if you see anything else that we might like buy it. I thought this could be a good time to really stock up.
He bought garden peas, I wanted marrowfat. He bought 12 tins neither of us like garden peas.
Spicy sausage 2 packs he can't eat spicy so I am going to have a great tummy.
8 packets of biscuits why 8 I asked as again it's only me that will eat them.
Toilet paper I wanted a pack of 12. He got 2 packs of 24's.
The best was 2 large boxes of matchsticks ?? It was buy one get one free. We don't smoke and haven't used a match for I don't know how long.
I'm now either putting on a couple of stone or passing a lot of wind.

Hee hee @Noidea2114

@Acinonyx2 & @HumphreysCorner I did pretty much a whole Waitrose order of various crackers, biscuits, soups & drinks I thought I might fancy. Don't usually shop there but they do stock some different things & I was getting desperate! There's no room for them in the kitchen cupboards so they're just piled up on the counters

@Anne1958 - I've helped out someone before in a similar way. It was many moons ago when I befriended another woman in Ireland on a yahoo group for fibroids. She came over to the UK for an op as it wasn't available in Ireland and stayed in a hotel afterwards to recover. It was about 45mins away from me so I visited her several times & brought stuff in etc. I didn't mind doing it at all of course and it went very well until the drive home after the very last visit when someone rear-ended my car & wrote it off! It was only my first car Also before that I had picked up her elderly father from Heathrow who'd flown in from the US to visit her. He paid for my airport parking & petrol but in old UK money from his last trip here - the notes & coins were no longer in circulation! Maybe I got some good karma later on somehow!

So @thereisonlyofme - if you wanted to say where you are maybe someone here could look out for you? In our village we have covid volunteers to help people shielding - if you have anything similar perhaps they could help. Or local Macmillan/Maggies volunteers.

@SerenaTuccot I have a DS 9 & DS 12. They've been ok apart from DS 9 who was overwhelmed when we told him (I'm stage 2 breast cancer, just started chemo). He had a hamster for his birthday last month as a bit of a distraction from all this & also lockdown. It felt a bit trite: Mummy's got cancer, never mind, here's a hamster! He loves it though & animals can provide a lot of solace. My childhood was a bit rubbish at one point & our cat was my best friend. Any pets in your household? We've got cats now as well - hamster is in a secure room!

You could jump in now to try counselling if you're up to it. Even try some anti-depressants/anti-anxiety meds if you haven't already. Anything that might help ease things even just a teeny bit is worth a try.

Cherrypies Dog is already registered with Cinnamon Trust, though they are based in Cornwall, and last time I contacted them they didnt have any foster homes or volunteer walkers in my area. Might try them again

@thereisonlyoneofme I had a hysterectomy and debaulking surgery in October . Not sure about the size of my tumour but I have stage 4 oc. I expected to find recovery tough but I was pleasantly surprised, it wasn't a breeze but no where near as bad as I feared.
One of the positives to come out of covid is that it has galvanised a lot of community volunteers who are doing amazing jobs supporting people ,is that an option for you? The decision to have any form of treatment is deeply personal it can help to talk through your options maybe a Macmillan nurse or I have found Ovacome useful: 0800 008 7054 (try also have a on line forum) Good luck.

Hello to @SerenaTuccot. Glad you have found this thread. Your situation sounds incredibly tough. I have a 9 year old too, and it's a lovely (if pesty) age. Do you have boys or girls? Are they homeschooling at the moment? That must be hard work if you are tired out with treatment.

We are enjoying halfterm here, even though it doesn't feel that different to a normal week! Had loads of snow last week, but it has vanished overnight. I was actually enjoying it this year, as I didn't have to drive - am usually a snow-misery-guts, in that I like it on the first day when it is all novel and beautiful, and then get increasing fed up with slipping and sliding about, and endless wet boots tramped through the house.

@thereisonlyoneofme, it sounds as though you've had lots of helpful advice. I just wanted to say that I have a stoma (hopefully will be reversed at some point), and it's been fine. Not great, but definitely manageable. Please do PM me if you have any questions about it.

Commiserations to @MrsPnut. That does sound miserable. Are there alternatives to the brachtherapy, if you decide you don't want to continue it?

And waves and hugs to everyone else. Hope everyone managed plenty of pancakes, despite chemo side effects.

Hello! Giving a wave to those who have just joined. So sorry to read so many tough stories. I really do feel like life is hard enough at the moment without such terrible things to cope with on top of it all.

My cold sores and mouth ulcers have cleared up thanks to the anti-virals so I am hopeful bloods will be fine tomorrow for chemo on Friday. I am now extremely nervous about it after the nausea last time, but also want to get it over with. It seems to be taking forever.

I have a question about arms after lymph node removal. I had 36 taken out in October and was told how important physio was. But what with my recovery, Christmas, lockdown, homeschooling and chemo, it has fallen by the wayside. I am now getting stiffness and pain/sensitivity in the top of my arm and armpit. It is really unpleasant. But I am being a wuss and don't want to call my breast care nurse cos I know this is my own stupid fault. If I do the physio now, will it get better? Or is my arm now buggered for ever more?

@Albertcampion please phone your nurse hopefully it's not too late for your arm to get moving properly.
In the meantime can you not start gentle exercises.
If you will be having radiotherapy it's essential for your arm to be in a certain position. That's what my BCN says.

Tonight I was diagnosed with stage 2b cervical cancer. I think I have my head around most of it. I expect treatment to be hard. Very hard. It's shit but it is what it is. What I'm really struggling with is how to tell my parents and siblings? We are a close family but I've chosen to keep the investigations from them for a number of reasons. I feel like I'm about to explode a bomb in the middle of their lives. It's breaking my heart. How do I do this? I realise that this is tiny compared to some of the incredible stories on this board but I don't know where or who else to ask.

@Anne1958

Did you post before? I'm so sorry you've had such a miserable time. I couldn't agree more about anti-anxiety drugs. I simply can't eat when I'm scared. Anxiety goes straight to my stomach. I've always been blessed with wonderful GP's who trust me to adjust my dose and it's been a life-saver. Fortunately, I have friends who work at one of the big cancer hospitals in NYC, where, as you say, it's routine to offer meds at diagnosis with no stigma about being a wuss for needing them.

I think you'd find it v reassuring to talk to your gyneoncologist, or perhaps your GP would have had a letter. To be only 1a with such a large tumour almost certainly means that it's v slow-growing - low-grade - with perhaps only a few cancerous cells in the tumour.

@thereisonlyoneofme

@gillmoregirl might be able to advise about more complex sugery. She's the other way round from you, with a low-down colon tumour which needed a TAH to enable access. It's all a bit of a jumble down there, not laid out neatly like the diagrams. So she had more than one organ involved and a temporary colostomy. (I think) She might be able to give you some idea of how long it took to be out and about again. Younger than us, but it sounds as if you're pretty active.

I don't know where you live but around here, outer-London suburb, there are now a lot of unemployed dog- walkers and doggy day-care owners because of lockdown and people working from home. If you have a neighbourhood website, you might be able to find someone on there?

@BadEyeBri Welcome to the thread none of us wanted to join. Has your case been to MDT yet and had a treatment plan arranged?
I was diagnosed with squamous cell vaginal cancer in Nov and I had 25 sessions of radiotherapy and 5 cisplatin chemo rounds. I’m now on brachytherapy. It will depend on which type of tumour you have but the treatment plan is almost the same for cervical and vaginal cancers.

I’ve got a mammogram and US today so my breast surgery can be arranged, I also need to find out the surgery codes for my procedures so I can get my insurance to approve it. I’m hoping the breast nurse is around today to help me out.

@MrsPnut MDT today or next week. I had my consult, biopsies and MRI privately and I've been referred back to NHS for treatment. The last week waiting for my results was awful. I expected the worse so it was a relief to find out I was treatable.

Morning all!
Firstly a warm welcome and sympathy to @SerenaTuccot - a horrible situation for you and your family. Loads of support here for as long as you need it.
@BadEyeBri welcome to you too, it is very hard having to give bad news people we love; I think it's one of the saddest parts of having cancer, for me. I was glad my DM died years ago so I didn't have to tell her! Do you have a treatment plan yet? I reckon it's easier to tell people when you have a better idea of what will happen, and at stage 2b can you be reasonably optimistic about a good outcome?
@ANightLikeThis Welcome to you too. It's great having people come on to share their experience of unfamiliar drugs/treatments, and I hope the thread can be some use to you too.
@Anne1958 I remember your previous post, but I'm not sure I said hello then, so welcome to you too. I'm sure you know it's incredibly rare for ovarian ca to be diagnosed at stage 1, but it sounds like you've had a tough time with treatment and anxiety. Wishing you everything good, and happier times.
@thereisonlyoneofme I felt I made a good recovery from my debulking surgery in 2019, although the operation was very long due to some complications, and I spent 9 nights in hospital and came home as weak as a kitten! But I could certainly lift a kettle etc, and I remember being able to get out of bed without much discomfort within a couple of days of the op. I'm very pleased to hear that your team are now suggesting surgery.
@BitOfFun it's terrific that you are feeling in quite good shape physically and emotionally, definitely the time to make a bucket list! Re sex . . I'm almost entirely libido-free and have been since menopause, unfortunately, and am not even a touchy/cuddly type, but since I've been ill, DP and I have had lots more physical contact, and that's been good for both of us.
@Noidea2114 good grief is all I can say at your DH's shopping trip! Did you laugh? I think I'd have made him return all the peas and biscuits! Hope your oncology appointment goes OK on Friday. Getting info always good IME.
@HumphreysCorner hope PICC line goes in easily today. I had a constantly bleeding nose with first lot of chemo in 2019.
@MrsPnut so sorry your brachytherapy is so horrible. How many lots will you need?
@Lubballoo hope surgery goes very well today, wishing you a good recovery, and a walk asap!
@Acinonyx2 that's v good news from MRI, but I can understand that it's difficult to feel completely reassured re lumpectomy. I've seen other women here saying they've asked the consultant "What would you do in my position?"
I have to get going now, but am waving and sending all good wishes to everyone here.

@Thymeout @thereisonlyoneofme I had anterior resection in November due to rectal tumour with emergency TAH required due to endometriosis. All was stuck badly together. Everything removed via open surgery. I also had vagjnal shortening due to severe endometriosis in pouch of Douglas. It was 8 hour operation and surgeon told me afterwards incredibly complex. I was blissfully unaware. I was 6 days in hospital and pain well managed with drugs. I took everything they gave me. At home I was able to go about slowly. Hubby wouldn't let me do much but I'm very stubborn and was able to lift kettle etc as long as not too heavy. I have illestomy which hopefully will be reversed and as @Starmer advised it's manageable and you quickly learn it's routine. In terms of your dog I think as long as you can manage food and water should be ok. Do you have a garden it can run out to to do it's business. I fully understand your worries having two Labrador dogs. Hopefully you will get some help. Currently I'm on chemo and physically doing well. Odd twinge which to be expected after extensive surgery. As you've been advised the fear of recovery is usually worse than the actuality. You could speak to Macmillan about getting help post surgery. Most people are very willing to help. ❤️

Welcome @BadEyeBri. I told everyone while I was still in the car park as I didn't want to wait until I got home. I felt better once my chemo started.

Back home after the PICC fitting from hell. It took 3 attempts, 1 one the right and 2 on the left and 2 different nurses as my stupid veins still refused to bleed. Then when I got to X-ray to check the wire was in the right place I took my hoodie off and the blood poured onto the floor. X-ray didn't have any first aid kits so I had to go back to have it dressed and was met on the way by a nurse with swabs. Went back to X-ray then back to have the wire moved and cut then back to X-ray. Had my bloods taken and can't have chemo on Friday as my bloods are too low. A bit gutted even though it's only a week to wait. Since the nurse told me the wire goes into the top of my heart it's made me panic a bit.

Do feel light headed so going to rest a bit.

Big wave 👋 to all.

HC x

@Noidea2114 I know you are right and I need to call. I am definitely digging out the physio stuff and getting back on it ASAP.

@BadEyeBri I was diagnosed with breast cancer in September and, like you, I didn't tell any of my family (apart from DH) that I was having investigations. Where possible, I told people face to face once I knew, and I made sure that my mum and my sister both had other people around who they could lean on once I'd told them. We also had a family WhatsApp thread already set up, which has become a really useful way for me to keep them all up to date with my treatment in one go, so I am not repeating myself. I have a DS, and we found this video really useful when telling him: We found he has been more resilient than we thought, but he has nevertheless found it difficult. We told his school and they have been great and even arranged some counselling for him. Good luck with telling people. x

I have just been in for pre-chemo bloods and PICC care. It turned out my PICC has become blocked so it turned into a complete fiasco. They couldn't get blood from me via a needle, so had to cannulate which was really sore. I came over all faint and so they had to stop and recline me - all this was in the chemo suite as they hadn't anticipated any problems. They then took out the PICC and have scheduled me in tomorrow to have another one put in. I did not have a pleasant experience having one fitted the first time around, so am dreading it. Just so fed up - it seems to have been one thing after another this cycle and I am drained and done. Can't believe I am only halfway through chemo. 🙁

@HumphreysCorner @AlbertCampion I am squirming on your behalves! What a nightmare - exactly the kind of thing I dread myself (I've had some cannula sagas and an infected port mid chemo). I hope they really get you both sorted out. Chemo is rough enough without these extra challenges. Hopefully onwards and upwards from here.

Oh @HumphreysCorner I must have cross-posted with you! So sorry to hear about your PICC woes. I had a similarly unpleasant time and feel very squeamish about it all. Hope you feel better soon.

@AlbertCampion they were about to send me home and come back next week for another try but thankfully the 2nd nurse managed it. It's bleeding again now. Hope your refit is a more positive experience.

Thank you for the welcome @Bloodybridget - I’m glad to have found such a supportive thread. I’m sending strength and warm wishes to everyone here.

@AlbertCampion I too have been having trouble with arm stiffness/pain after my lymph node removal/mastectomy in December. I had to stop the physio exercises after having emergency surgery on a haematoma in my reconstructed breast three weeks after the initial op, which definitely set me back. But I restarted the stage one exercises very gently (and maybe not as diligently as I should have done!) and, after about four weeks, have regained a lot more mobility/less pain in that shoulder. So I second others’ advice about talking to your BCN or physio, as I’m sure it’s not too late to fix. And best of luck with the PICC tomorrow.

@HumphreysCorner I empathise with the nosebleeds, I’ve been getting them too - thanks, presumably, to the Herceptin. I’m also bruising at the drop of a hat, along with having a couple of haematomas post-surgery. My bloods are fine and the doctors don’t seem overly concerned, so I guess it’s just a side-effect I’ll have to put up with.

@merlotbythefire I can report that my second Kadcyla treatment was absolutely fine, barely any side-effects. Hope it continues that way!

Finally, a question of my own - has anyone had issues with their feet/toenails after docetaxel treatment? The skin around my big toenails has been inflamed and bleeding (though not infected) for a few weeks now, and the podiatrist has just started treating them with silver nitrate as there’s hypergranulated tissue on both toes. They’ve cut back one of the nails, which had become separated from the nail bed. The oncologists reckon it was caused by the docetaxel I had last autumn, but it seems to be taking forever to heal and at the moment it’s too painful to put on a proper pair of shoes to walk anywhere. I’d love to get back to (gentle) exercise again, so if anyone has any tips, I’d be very grateful. It’s a small problem in the scheme of things, but a frustrating one!

Hello everyone. I hope its ok to post here. I'm 42 with 2 kids and have an urgent gynae appointment on Monday to have a look at a suspicious looking lesion on my labia. I'm on methotrexate for another condition and also was due to start drugs for MS any time soon. I understand there is an increased risk of some cancers when you take methotrexate. I have also had cell changes in the past and have been exposed to HPV.

I'm trying my best not to freak out but its so hard. I'm so in awe of all of the posts I have read and how you are all getting through each crappy day.

Have told my DH who is being amazing and a couple of friends that I work with, just to explain the time off, but feel like life is on hold until Monday. And I know Monday won't be the end of it, maybe even just the beginning.

Evening all and welcome to the newcomers.
@FrankieDettol the rule is NO GOOGLING while you wait, it just scares you. We will hold your hand and distract you. Could you turn out a cupboard or batch freeze some meals? Just try not to run ahead of yourself. You will cope when you get there. Hugs x This is the hardest bit.
@AlbertCampion have you got the Breast Care Now leaflet of exercises for post lymph node removal? I’m sure if you start again and build up you will get there. You have to ignore the pain a bit when you stretch up to get the tissue to lengthen but it won’t have shrunk permanently. I still have nerve pain and numbness two months on but today started light weight training which made me very happy.

I also applied for the FRAME trial to build resilience but failed the selection because they are looking for anxious and depressed cancer patients and I was apparently too jolly in the screening questions.

I have to say that after going through chemotherapy and feeling so ill with it everything else has been trivial in comparison. It seems minor to grumble about leaky wounds or soreness after radiotherapy. I’m even tolerating my DH filling the house with his hobby without moaning at him. And the lockdown and Covid stuff passes right by me. I just hope it lasts!
Greetings to all and fingers crossed for @InOtterNews
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@FrankieDettol I know exactly how you feel. I got my diagnosis of cervical cancer yesterday. Waiting for my biopsy results was the worst week of my life. I had convinced myself that I wouldn't be treatable. The results were a relief. I'm just waiting on my MDT to confirm a treatment plan.
Sending you strength from afar, whatever the outcome it is unlikely to be as terrible as your imagination. Don't bottle it all up.