Cancer Support Thread 85 - Hoping for a positive 2023

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Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

Hi everyone, I have tried to stay off the thread to cling on to some sort of hope and to continue to function so I can look after my 3 month old baby.

first of all, @thereisonlyoneofme i know nothing I will say will help but I just wanted to say that I feel your pain and I can understand how scary this feels. I am hoping there will be something they can do to help you and that you get to talk about the results in full. Try McMillan support line option 3 for a nurse to speak about it too. I also wanted to say that whilst I am not diagnosed yet (but fear it’s impeding) I am too developed horrible dizziness from Boxing Day and fear for the worst there.

@mowly77 i am so glad it was a good result for you & my heart goes out to you as I also have a small baby and know how extra heart breaking this is.

as an update, the X-ray and ortho consultant ruled out bone growth and I was sent with a suspicion of soft tissue sarcoma to ultrasound and mri. I had my ultrasound done yesterday and I was praying for sonographer to tell me that it was innoncent. Instead I got “I don’t know what it is”.... which I think is bad news. My lump has grown and causing very unpleasant synonyms locally in my pelvis, I feel super dizzy and short of breath .... also all pointing to a very sad state of things.

the worst thing is that I allowed myself to cling on to some hope and now relieving the horror of facing a very upsetting diagnosis....

I am so angry. I am angry it is happening to me when I have my darling little baby who needs me and who also has issues that will likely to require help....

I am angry my gp messed me about when I first found the lump at the end of November and my mind now spinning and i am blaming myself for not pushing them to pay attention to me sooner.

I am so so so so scared. And the moment bad news became very probabley husband once again getting more distant. And I also find it so hard to look after my darling baby, my heart breaks when he smiles at me. All I want is to be with him and see him grow up.

I am so angry it’s happening to me, everybody has been saying I am a hypochondriac and I pushed so many symptoms away and blamed so many of them on my pregnancy.

I miss my mom and my sister, I haven’t seen them since 2019as they live inadofferent country and since the pandemic visiting has become very difficult. Will I see them again? I worry that i won’t.

i am so sorry for this rant, I am feeling so so completely devastated, my heart is just ripping apart

Sending love, @Anxiouslikenoneother So much love....

Yay @mowly77 for a bit of good news! Of course you can’t process it, you have been steeling yourself to accept bad news so you are numb. May it stay this way for years and years!

@Anxiouslikenoneother well done for holding things together. You have come a long way without falling apart and so far your fears have not been realised. Keep practising anxiety control as much as you can. Have you tried apps like Calm or Headspace? By the time you get the results you will be like a Zen master and you will be serene and in control. Seriously though this drawn out stage of not knowing is awful and just has to be survived however you can. I hope they don’t keep you waiting too long for the MRI and results. Don’t be too afraid of the MRI it is nowhere as bad as you think it will be. And Knowledge is Power! Sending hugs

@user36372811 good idea to have a phone call. At least you will know what is going on sooner than expected. Fingers and everything crossed for you it’s good news.

@EachandEveryone do you have a start date yet?

@thereisonlyoneofme thinking of you. Is there any way we can help you? I find it comforting thinking of the army of invisible friends I have willing me onward even when the path is stony and uphill.

I’m plodding along. Still no hair. Legs and back weak, like gravity is extra strong. Trying to exercise but feeling pathetic. I think it’s the combination of Covid and dose dense Chemotherapy that has flattened me. I’m just so tired of all this. I’ve been having treatment for twenty of the last thirty months and knowing my luck I’ll get bonus chemo treatment after surgery too. I’m going away with my girlfriends this weekend so there’s a treat to look forward to even if I’m teetotal now and they are serious drinkers. DH is planning mad excursions without me!

Sending love to all including lurkers and anxious dabblers who aren’t sure if they should really be here.

Top - grizzled veteran of the thread

I hope it's ok for me to post here, if not I am really sorry. But I'm scared and angry with myself.

I have a breast clinic appointment on Monday for a lump in my breast.

I found it 6 months ago, got brave after a few days, went to GP who said "it's mobile, has give and you're still quite young, it's probably a hormonal cyst" and left it at that.

It has grown since. At first I didn't think on it much, but just before Xmas I thought "shiiit, this has actually grown a lot". I was working a busy retail job and didn't want to ruin the holidays by causing a fuss, and it's probably nothing anyway so I left it until kids were back at school.

The doctor who referred me agreed it had grown a lot, and described it as firm and mobile. It's also quite tender and painful - it's on the side of my breast and has grown closer to the surface so it's always being caught with arm movements/pressing into bra, so I can't forget it's there now. :(

I am fucking terrified. I know it could still be "nothing", but all I can think is that if it's cancer I gave it an extra head start by not pushing the first GP for referral, and not paying it more attention in the following months and it's my fault for being stupid.

@LuvSmallDogs of course you can post here it’s what the thread is for. We all know how terrifying this stage is. Take heart from the fact that 9 out of 10 referrals to the breast clinic are for benign conditions. You will be seen for a mammogram and ultrasound scan and if needed a biopsy. They may reassure you and discharge you immediately or they may bring you back for biopsy results a week or so later. You will get an idea of what is going on even if they don’t spell it out till they have the results back. Have you got kind people you can rant to while you wait? Try to keep busy and don’t write your funeral plan quite yet. Rant away we understand!

Top x

@TopOfTheCliff thank you for being so nice. I moved where I am now over a year ago and have made precisely 0 friends here and other than seeing mum and dad once a week only have my husband and kids. I'm quite lonely to be honest.

I've had a bit of a rant at my husband but don't want to put too much on just him and when he said that if it was cancer I'd beat it because I'm so strong willed I got really annoyed and told him that wasn't how cancer worked.

My mum would probably start planning my funeral as you put it - hell she'd have me buried before the results come back - and I don't think I can deal with that from someone else.

@mowly77 I'm so pleased you've had some good news but totally understand how you can't process it. I don't trust good news and a few months ago rang the CNS for some results and then asked her to confirm my DOB as I was worried she had the wrong person up on the screen! I'm hoping your drugs work for you for a long, long time.

@user36372811 as Mowly says, I've had all combination of good and bad news with phone and face to face appointments, you can't read anything into that. It might be that they've had a cancellation of this might be the usual turnaround for results. It's terrifying but best to know as soon as possible, the longer you have to wait, the worse is gets. I'm hoping you get some reassurance soon.

@Top from one veteran to another, I understand how you must be so tired of all this now. I've been on my journey for 3 years now and have had treatment for the last 22 months out of 25 with a 4 month fight during Covid to get started on anything at all and am very weary of it all. I was explaining to my best friend at the weekend that I sometimes feel I don't want to do this anymore but then I feel guilty for even thinking that as I don't want to be 'set free'. I don't know what I want, well I do and that's to not have incurable cancer. I hope you have a lovely weekend with your girlfriends and I sometimes fancy a big drink too, 3 out of my many drugs don't mix with alcohol so I'm teetotal too. I might try the Calm app to see if it helps my anxiety too.

@user36372811 I have tied myself in knots over the significance of a face to face over a phone call and the speed of any results. There is no correlation and I've had all the 'combinations'. It's best to know as soon as possible, waiting just adds to the anxiety. I do hope you can get some reassurance very soon.

@Anxious thinking of you, I've permanently anxious too and do understand. I've been on beta blockers since the start of all my troubles, they calm me down a bit and just take the edge off, my GP was happy to put me on them. It might be worth having a chat with yours to see if you can get something to help.

@LuvSmallDogs of course you're welcome to join, come on in! Don't be so hard on yourself, you're doing something about it now and are on the right path to getting it sorted. I'm still going over some 'what ifs' that happened 3 years ago and I know it's silly but I find it hard to suppress those thoughts.

@thereisonlyoneofme thinking of you Xxx.

Hi everyone.
I am to have a lymph node biopsy tomorrow. They will sedate me and use a camera to go down my throat and through to the lymph nodes.

I have never even had sedation before although I have had many GA's.
Has anyone here had one? What will I expect? All I have been told is that I can't eat/drink for 6 hours before. I received my letter yesterday but there was supposed to be a leaflet explaining everything in the envelope, but there wasn't one.

I have to have the biopsy because I had a blood test which showed a high level of CA125. I was told it could mean ovarian cancer, but I had a total hysterectomy 4 years ago. The lymph nodes are infected (?) in my abdomen and chest. (I had a CT scan that showed this).
They talk about a primary that they can't see and the biopsy will show where it is.
I know very little about cancer and all the terms that go with it. If anyone here can shed some light on anything that I've said I would be most appreciative.
TY.

@RoseOud I have stage 3c ovarian cancer. CA125 is a protein in the blood which is a response to inflammation, ovarian cancer being one of these things but any benign abdominal inflammation can cause a significant rise. I suspect the CT showed that the lymph nodes are enlarged which is why they want to investigate further. I can't see how you could have OC if you had a total hysterectomy 4 years ago. I’ve done rather too much reading about my condition and scoured forums for answers to various questions I've had and learned about things I didn't know, but not encountered this before. I hope that reassures you a little and feel free to ask me anything else. I've never had sedation but one of the other ladies will be able to advise you on what to expect. Hoping it all goes well tomorrow X.

Thank you for your quick reply.
I have seen 3 different doctors since this began and they all refer it back to 'it could be ovarian cancer'. I have to remind them that I don't have any ovaries and then they look a bit blank!
I don't feel unwell at all. All the signs of cancer I don't have, like losing weight without trying, tiredness etc.
But I do have problems with my bowel. I was born with Spina Bifida and have always had bowel and bladder problems. Constipation was the main problem I've had. I now use anal irrigation to empty my bowels 3 times per week. Since I started using this,I have had discomfort in that area, before and after using the irrigation. Gp prescribed buscopan for the discomfort. It has never been easy.
I wonder if an infection has got into me through this?
I suppose I'm grasping at straws as to what the answer is.
One day I'm thinking this is the answer then another day I can hear the last dr I spoke to saying 'prepare yourself for the worst'.
I'm so worried and like everyone on here says, the waiting is the worst.

Picc line going in on Thursday weekly chemo starts Friday. I was supposed to have a kidney function test on Friday afternoon should I cancel it or will they do that?

any tips on what to take/wear will be greatly appreciated x

@LuvSmallDogs just wanted to say I totally understand what you are going through. I am 36 and looks like I am facing a devastating diagnosis after dismissing a range of symptoms as pregnancy related. please keep me in the loop ok how you get on and one thing I can say to reassure you is that if you generally feel well in yourself it’s already a good start: i am worried things got too far with my condition as I never felt so unwell in my life - weight loss, breathlessness, fatigue and dizziness. I know it’s still scary but there is wealth of treatments available now and you are now getting on top of things and getting it investigated. Benign lumps can also grow. Big big hug to you

@TopOfTheCliff thank you for your kindness as always. I wish you were my gp when I went for the lump check back in November...

I also in awe of how amazing you are and a source of great support to so many people on this thread. 💕

Aw thanks @Anxiouslikenoneother that’s a nice thing to say!
On this thread we try to pay it forward. I had so much kindness from @BloodyBridget and others when I first posted I try to pass it on.

Welcome @RoseOud I had a colonoscopy with sedation and it means you are relaxed but conscious and able to cooperate with the staff. Some sedatives like midazolam also wipe your memory so although you are awake you can’t remember anything afterwards. Personally I love general anaesthetics as I sleep through and wake up ravenous when everything is over. You are understandably anxious and it is awful waiting to find out what is going on.

@LuvSmallDogs how old are your DC? I made friends through the DC and their activities that have lasted half a lifetime. It is hard to put yourself out there when you move and don’t know anybody though.

I just had yet another call to rearrange my surgery. This time it is being brought forward to next Tuesday so I have said yes please. I want it done before they change the date again. I feel like I am walking a rickety narrow plank trying to keep moving forwards while random saboteurs try to knock me off. I can just see the far side of the bridge in the distance!

It’s freezing here. I am going to light the log burner and get a good fug going.
Stay warm
Top

Hi everyone - and so sorry to everyone going through a hard time, or anxiously waiting results, or frightening procedures. Sending lots of love and positive thoughts - I am also in awe of you, @TopOfTheCliff, and your kindness and positivity. I hope you have a nice evening in front of the fire and keeping fingers crossed your surgery goes ahead on time next week.

@EachandEveryone - you were asking about what to take/wear, but I wasn't sure whether you meant for the chemo or Picc line. I don't have a picc line but for my chemo, I always wear comfy running leggings - they make me feel less stronger than sloppy joggers somehow, but also mean I can relax in comfort when I get home. My unit provide drinks and a sandwich if you are there over lunch, but I always take lots of water - I get very thirsty during chemo and the little cups they provide go so quickly. And something to read/watch/listen to for distraction. Some people say to take some sweets to suck if you get a nasty taste in your mouth during the infusion, but that hasn't happened to me so far.

I'm taking a couple of days off work, and going away by the sea with friends later this week. I am so bored of the slog of treatment (although it's been going on much less time for me than for lots of you on this thread), so am looking forward to a change of scene and different company, but also oddly anxious. I haven't been anywhere overnight since I started chemo and I feel like my world has shrunk - a bit like I felt when we started being able to get out and about again after lockdown. But it will be lovely to have a break before my next cycle (next week).

@EachandEveryone, I initially took lots of stuff to my first chemo appointment. Partly because I had no idea what to expect and partly because I was also having immunotherapy and they had to keep me in and observe me for 6 hours afterwards. That was a very long day … my oncology day unit doesn’t provide any food, apart from little packets of biscuits, so I always took a packed lunch with me, a sandwich, some crisps, grapes etc and a big bottle of water, even though they provided water, squash, tea, coffee etc. I learnt very quickly that it’s a good idea to drink as much water as you can, it may be just psychological, but I always felt better when I drank lots before chemo, on the day and the few days after. I felt I was flushing it through my system more quickly. (I also had awful constipation and water definitely helped, alongside Laxido and softeners, sorry if TMI but the constipation made it miserable)
I also took a book, although someone is constantly coming over to set things up, do the flush, sort out the chemo drugs etc, so I didn’t really get much reading done. I mainly read threads on Mumsnet or Twitter or played crappy games like candy crush on my phone. I don’t know what everyone else’s experience is / was, but on my oncology suite, everyone ignored each other. Very few people wanted to chat.
I also took hand cream. And maybe a few sweets / chocolate too.
In terms of clothes, be comfy and wear tops you can easily take in and off if you get too hot/ cold. I always liked a cardigan around my shoulders.
Good luck on Friday. It’s always good to get the first one ticked off!
(Apologies if I’ve wittered on too much…)

@dotty2 , I know exactly what you mean about a shrunken world. I feel as though I’ve been on the edge of the real world for the last 10 months. A weekend away will hopefully do you the world of good. I have become terribly bored of my own house, as comfortable and reassuring as it is. I very much enjoy any little trip which takes me away.

@RoseOud any inflammation in the bowel can cause CA125 to rise and the fact that your discomfort has only started since using the anal irrigation ties in with this. Buscopan just stops the cramps rather than calming the inflammation so you might feel a bit more comfortable but the amount of inflammation wouldn't change. I've found that many doctors mull things over out loud, three of them not being able to make a connection with OC and the absence of your ovaries tends to suggest they also can't explain it.

Hello All
I'm new here, got diagnosed yesterday.
Not over the shock yet.
Got op next Tue

Hi all

Can I join you? Diagnosed with stage 2 triple negative breast cancer in November, I’m on chemo and immunotherapy. Oh, and my husband left me in September so also doing this alone.

@EachandEveryone i’m not a veteran of chemo, only 2 sessions under my belt but would definitely recommend taking a big bottle of water and some snacks. Take something to read or watch but nothing you’re too invested in as it’s hard to concentrate. Layers of clothing which are easy to put in/take off eg a big scarf - some of the drugs are cold going in so can make you quite chilly.

@EachandEveryone phone charger is must.

Did they say how long you would be there for? Mine was 6-7 hours but there appeared to be a fair few people who were in and out within an hour or two. I didn't get offered any food or drink other than water so go prepared. They did let me wonder around and go to the cafe etc though

Well things arent going well. Started steriods on Sundaym they dont seem to be helping at all. PhonedGP for advice, none forthcoming, cant get even a phone appointment, ring again tomorrow morning and see if I can get one then, No.13in the queue today no appointments, Told them it was urgent no result, so dont expect any help from them at all. Decided that its best for dog to go sooner rather than later.Cant speak to anyone at Oncology hospital to get advice, no one answering phones. Feel very hopeless today.Sorry shouldnt post here really depressing you allwith our own problems, no oone else to talk to

@thereisonlyoneofme so sorry to read your update. But please keep posting. Would contacting PALS be any help to get through to onc? Do you have a nurse specialist? Or Macmillan? Are you getting any support/ referral to your local hospice? They can help with so many things.
welcome to newbies- so sorry you have to join us. Best advice is stay off Google, stick to Macmillan, breast cancer now etc. And ask anything.

I have never even had sedation before although I have had many GA's.

Roseoud, I’ve had sedation for a few hospital procedures. In fact I had a knee replacement done on Monday by epidural and sedation. It’s a nice an aesthetic. Very, very gentle with no vomiting etc afterwards. They slowly run the medicine into your cannula and you just drift away into a soft sleep.

hth 😊