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

So sorry you've been told its cancer Sowhatywhaty. I also have breast cancer and 2 children at secondary, one doing GCSEs this summer and one year below with ASD. The pain I would not worry about, I did not get it but it had gone to my lymph node and could not feel a think, don't think pain is a sign. Its probably just standing at a strange angle doing mammos or something like that or anxiety. The next appointment they normally confirm the cancer and tell you what type, the grade, whether its hormone positive or negative and whether its HER2 positive or negative and start discussing treatment and sometimes book in further tests, I had a MRI of breast and CT. Those come in quite fast and your mind goes into overdrive but after that at least you focus on getting the cancer out. I hope its been caught early.

inkyscribbler Hope yours turns out benign. I think when they do biopsies its 25% chance its cancer, 75% benign but encouraging they have not said to you they think its cancer. I was told 100% certain its cancer at mine and there's a category down where they tell people probably cancer. If they did not say either of those would be cautiously optimistic about the outcome.

Good luck for the pre-op and port removal MrsPNut

Hope you have finally escaped now Mowly

My video oncology got pushed back to Monday and it clashed with chemo so they have moved chemo to 4.30pm, not sure that is viable but we will see. I also have a bruise from last weeks cannula and not sure they will get a vein though so far they have but down to the one arm due to lymph node clearance. Lots of neuropathy still, especially in both feet, urgh, only done 3/12 . The hands and legs do go with exercise but feet just its permanent.

DD is in France with MIL. MIL called at 8am asking DH if he had any friends who could take DD out today. Will be good for DD to go out. MIL just cooks lots of lovely French 5 course meals but with about 4,000 calories a day in, they are very nice but after a few days you feel like Michelin Man there as she hates anyone leaving the house and throws a tantrum if they do and DD is at the very stuffed about to explode stage after 3 days of food. She's normally a thin active gym bunny/runner and not used to just sitting and eating all day but that's all MIL does, cook and eat and the meals take about 3 hours each.

DH just told DS about the night away we have from the cancer charity and he nodded so appears fine with that, he is very anxious so best to check. Getting progress on his schools finally.

Love to everyone.

So sorry @Sowhatywhaty but as everyone says once else treatment gets moving it will be easier. The anxiety about pain and what’s going on inside your body is awful but agree pain not a sign of lymph node spread. Or even of breast cancer. I’ve only felt pain with this “haha I’m back ten years later, bitch”spread. Yes agree my first thought was DD and then telling my family was hell on earth. It’s awful to feel the trauma you’re inflicting on loved ones.

@Silkierabbit wow yes my MIL lives in France too but she’s not French so the 5 course endless meals are not so bad but still feature heavily - does seem mandatory in France!

I can’t believe I made it out of A&E but I did late last night. Unfortunately I have been diagnosed with a rare blood disease where my blood is too cold and clots itself binding all its platelets up. Then your liver gets fucked and can fail. Explains my extreme fatigue, nausea etc but as it’s somehow been caused by a cancer - and not one I have yet been diagnosed with - it is very fucking worrying. Most worrying of all they sent new schedule of treatment for the metastatic spread from breast they already know about (lungs; bones) and it’s not going to start until 29th which is another months’ delay. I’m not having that as I’m already so behind that really cuts my life expectancy further. I’ll call oncologist’s secretary monday who is brilliant and explain. But I do see that having the blood disease will complicate treatment to say the least. I would feel like the unluckiest person in the world — (and @MrsPnut if I could have actually got on the floor and had toddler tantrums I would have. Sadly being constantly cannulated and mainly trapped in bed put pay to that) — but it was so amazing to surprise DD with my presence this morning who said among other things : “I love you mummy! I don’t want you to be eaten by a crocodile!” AND I’ve just had amazing new wardrobes/bookshelves built into my bedroom and I want to live long enough to enjoy them! Both big and little things. I’ll probably be a despairing heap again tomorrow — but so it goes.

Glad you escaped Mowly but so sorry to hear about the blood disease and another cancer, urgh.

Well to be fair it’s not definitively another cancer, no one has said that, but the places I have cancer in are not listed as underlying cancers that cause the disease if you see what I mean? Might have been caused by an infection. Either way I’m doubly fucked now because it’s a serious condition, I have it, I feel like death and I STILL haven’t started any treatment for my actual fucking cancer.

I don’t mind today because I’m happy just to sit in my own bed in the same house as DD again. And I won’t mind when I am dead for obvious reasons. It’s the bit in between today and death that concerns me.

Ah well. I’ll speak to my onc on Monday and going to the Marsden in a couple of weeks. Fun times.

Oh @mowly77 what devastating news. You sound so strong, but it must be so hard. Thinking of you tonight. Words are inadequate.

Hi everyone, so i saw my surgeon on friday for the biopsy results. I still don't think they know what it is because i could hear him talking about me on the phone and the nurse told me he was still checking my scans. Anyway when he finally came in the room he brought the cancer nurse with him and i literally nearly had a heart attack. But he did say my biopsy showed NO cancerous cells. Phew massive relief. However he said he can't be sure there isn't any in the whole of the mass itself and the only way to know would be to remove it, chop it and check it. He said from my scan if they do find any then it doesn't look like it has spread anywhere else which is good. Surgery is coming round quick end of April/begin of May, massive op which will be 3/4hrs can't promise i won't need a stoma or my lady organs removing. I'll also have to stay in hospital for 5/7 days afterwards to recover. How do you all manage being away from children for so long? Never been away from my boy at all and the thought is killing me. Also i'll still not be recovered enough for his 4th birthday which makes me sad but it is what it is and at least it is getting taken out. Thank you all so much for your kind words and listening to me rambling on these past few weeks, i don't know what i would have done without your support

@AFB2022

So pleased for you.

Stop a minute and breathe. You thought it was cancer. You were worried it would have already spread and be incurable. Your GP said it looked like a carcinoma.

BUT the biopsy found NO malignant cells. There were NO signs of spread on the scans. Just press pause for a bit and enjoy this moment. Make it last. Don't rush straight into worrying about the op and missing your son and what the pathologist might say.

No amount of worrying can change the future - which is now looking a lot brighter than it might have been. You can do it. Congratulations! You've got through it this far. Pat yourself on the back and surprise yourself.

Now enjoy your Sunday!

@mowly77

God, what a nightmare. No wonder you're feeling wrecked. Am I right in thinking that if they can't find cancer in the usual places, it's more likely to be an auto-immune condition derived from a historic viral infection which is having a flare-up? Wondering if it's connected with your bc recurrence? If your immune system took its eye off the ball to squabble with itself instead of doing its job and zapping embryo cancer cells, treating the AI blood problem would also be beneficial to getting rid of the bc? Might make waiting for chemo easier to live with.

But you'd know more about this than me. Just seems a bit of a coincidence. It'll be interesting to have the Marsden's take on this.

In the meantime, hope the new bloods are helping you back into the land of the living. Nothing like the marvellous medicine of home and 3 yr old cuddles to make things better.

Glad they could not find any sign of cancer AFB Re 4th birthday, could you maybe tell them they get two birthdays this year like the Queen and have a quick thing on their birthday and something else later, maybe at 4 and 1/4 or 4 and 1/2. With the week you are in hospital maybe could they stay with a grandparent then its like a holiday for them if you have a suitable one. If not kids are quite adaptable, it will be a bit rubbish for you but health has to come first sometimes. They generally include some scary risks with things, maybe ask them what the chances are of those, quite often its almost never but its covering the legal side incase something does happen.

@mowly77 I'm so sorry it's so shit, but really glad you are home

@AFB2022 5 days will fly by, I was in hospital away from my kids for 5 weeks and 2 days, it killed me

@Sowhatywhaty sorry the news isn't good, the uncertainty is awful

My pain seems a bit better today, I'm really worried about how long I have been taking tramadol, don't want to become dependent. I'm getting bored of resting, which is probably a sign I'm getting a bit better. I've been asked out in a date on Friday night!! Would it be mad to say yes??

@MissSmiley SAY YES!!!! 😄😄

It would be mad to say yes MissSmiley but being normal is very overrated so go for it.

Aah I’ve been overdoing things madly on a cycle tour for three days. I had so much pain after the Zolendronic acid Infusion I nearly cancelled the trip. Luckily I didn’t and I managed to cycle up Cheddar Gorge with my panniers! Cycling is great as you can eat whatever you like without feeling guilty. I’ve come home aching lots from the cycling but the original pains have all disappeared! I’ve got a week now before I set off on my three month adventure so I’ve got a mad week. I’m having my FIFTH Covid vaccine on Wednesday and a haircut that needs to last till July.
My last withheld post was full of messages to our new thread members but it never got published. I’ll try to explain what I am doing without upsetting the Mumsnet admin team before I set off. Meanwhile:

@AFB2022 I’m so glad the chance of a cancer seems to be receding for you. In a few months you will look back at all this like a bad dream hopefully. @Thymeout gave you some brilliant advice there

@mowly77 let’s hope you have an autoimmune coagulation disorder like @Thymeout suggested. That hopefully won’t stop your chemo nuking the secondaries. You are being amazing facing this dreadful situation and you must know we are all rooting for you in an invisible army.
I hope you get some of my DHs amazing rare platelets. He donates them and they are so special that they whizz off to the Marsden or Great Ormond Street or the John Radcliffe to people in your situation. Sent with love from Devon!
@MissSmiley I do hope things continue to get better for you. Can you wean down the tramadol at all yet? I found it made me feel so weird I couldn’t cope with it at all. Is the potential date someone you know already or a stranger?
@Silkierabbit good luck tomorrow with both your appointments.

To everybody on here stay strong and keep moving forward. Everything passes eventually!
Top xx

@TopOfTheCliff your adventures sound fabulous, I hope you enjoy the next stage.

I've only been on tramadol for three weeks and today I only had my morning dose and nothing else was needed, not sure if that will carry on because I needed that and oromorph on Friday. The date is with someone I haven't met before which is a bit scary, I've got five whole days to change my mind.

I had Stage 3c Ovarian cancer nearly 9 years ago - surgery, chemo, post chemo complications, life changing impact on my body yada yada.

I've had regular scans and check ups since (private medical through work thankfully) and only had one blip with a raise ca125 in that time which turned out to be nothing. But the longer since diagnosis, the more I think its just a matter of when, not if (based on statistics).

And I am having 'tweaks' in my abdomen again (aches and tweaks at original tumour sites, bloating, feeling full etc) so am scared its come back. I've pulled my scan forward to this week but will still have to wait 10 days until I know - and the worry is starting to paralyse me! Not fear for me, but the impact on my family again .

Anyone had recurrent oc? What were your symptoms? How did you tell your family if it did come back???

Sorry you're going through that @Chilver - I'm at the beginning of my journey but sitting in fear today because I can't get hold of the hospital and I don't know what's going on after my MRI scan. You've kept it at bay so far, fingers crossed you continue to do so. The waiting is horrible because you can't really plan

Sorry to hear you're in limbo land @SierraSapphire; the waiting is truly horrible. What are you doing to keep yourself occupied whilst you wait? I'm supposed to be finalising something for work that I really must just focus on and get off my desk!

I've been working (slightly unfocused!) @Chilver I was fine all weekend, but today just lost the plot a bit! I have just had a call from the hospital and they've said it's stage 1a (endometrial) - so that's obviously the best it can be. Otherwise I have been obsessively reading books about cancer, which is helping me think through changes I need to make. I mostly live a healthy lifestyle anyway, but it's thinking about stress and work-life balance, which I know hasn't been right. Did you make changes the first time?

So sorry to hear about your diagnosis, SierraSapphire but really pleased to hear that its stage 1a for you. Of all the cancers to get, that is an early diagnosis so lots of options and hope for you.

I too wonder about stress and work-life balance; I am rather driven (workaholic!) and last time had gone through a period of enormous stress from bereavement and throwing myself into work for a few years. That being said, I was already in the middle of massive life changes with having gone back to uni to change direction completely, gotten married and having a baby - so a lot of change happening back then! Now I am in a period of stress too - work is insane and I often work through the night to get things done, driven by my own work ethic but also pressure on my rather senior, stressful job. I do worry its caused the cancer to return, or could. Financially though, we need me to be earning what I earn I guess I've just slipped too far into the unhealth work-life balance....

@TopOfTheCliff @Thymeout it’s called Cold Agglutinins … nope me neither 🤷🏻‍♀️ Those are good ideas though … Worryingly my oncologist’s registrar called me today and he’s never heard it. But my oncologist is back tomorrow so I hope to fuck she has. Otherwise yes I am sure the Marsden has and I am counting down the days until the 25th when my appointment now is. Erm so there’s no treatment for it exactly if it’s secondary to cancer or an acute infection; you have to stay warm and take folic acid and that's it. The leaflet they gave me helpfully suggests moving to a warmer climate. It’s a fucker. I’m so lacking in energy I need a blood transfusion just to get downstairs to the loo or a drink. I JUST WANT TO GO OUTSIDE GODDAMNIT. Ah well. May I also add this is a wonderful disease to have during the current energy crisis. turns electric blanket up

@mowly77 I have no experience of cold agglutinins in cancer care but my MIL had this phenomenon for about 15 years.She had to keep warm eg wear slippers and gloves and hat outside and take folic acid.She also had regular small blood transfusions which were a nuisance for her but she had a heart condition which was made more risky by anaemia.it was an inconvenience and did cause some non life threatening issues but she led a normal life, dog walking, gardening, baking , socialising etc and died in advanced old age of her heart complaint in her own home.

I have a small business Chilver and it's been really hard since Covid and where I was good at taking holidays before, they've got swallowed up in the last couple of years. I'm also the main carer for my DM. I've been wanting to change things for quite a while, I guess this is my signal....

Glad you had a good cycle tour Top

I had oncology appointment finally today apparently what happened on Thursday was the oncologist was in a different video link to the one I had been sent. Spoke to her today and she cancelled todays chemo to give me a weeks break to see if neuropathy improves. I was very happy to have a weeks break after 3 weeks of feeling meh though DH was a bit shocked. I am not sure if it has any impact on success but there's a relatively low benefit to chemo to me and a risk of permanent neuropathy. Its actually gone today atm in legs, gums, eye (if that was neuropathy rather than eye issues), and hands is more off than on today and today is first day in about 2 weeks I had about an hours respite with the feet. So hopefully will calm this week. Its the week we go to the charity's hotel on Thursday night so that timing is great. I may even be able to do things and may add on more nights. Only issue is our 17 year old cat is very, very ill atm and may die today according to vet and DH. She had a uti a week ago given antibiotics recovered then started bleeding again on Friday. Husband called vet on Friday who said maybe she was just stressed and gave her anti-stress tablets and no new antibiotics and tablets for thyroid. I was quite worried by that and said to DH but he just thought vet knows best. She then bled so much yesterday half our bathroom floor was blood downstairs and its a big bathroom and not eating even tuna. DH called again today and explained she was nearly dead and vet said wait 2 hours then bring her in. Then DH takes her in and vet said she is nearly dead and bleeding a lot, hmm yes its what we told you. At least now she is on oxygen, antibiotics etc but vet said does not expect her to survive today due to volume of blood loss and age. Though no call yet so must still be alive atm and she is a tough thing. I was expecting her to die soon but not in such an awful way, we really need a different vets. I don't know if outcome would be different but at least she would not have been in so much suffering over weekend. Poor DH is blaming himself but its not him, he tried on Friday.

DD is back from Paris on Wednesday.

Love to everyone.

I am so sorry about your cat @Silkierabbit that sounds really horrible for all concerned. I had a cat die in a awful way at the vets before and I still feel guilty. I have a pretty old cat now with thyroid issues (on meds) & I’m dreading something happening to him. Especially whilst I can’t move, as DP is not a huge fan of the cats to say the least. Please don’t you or DP feel guilty, sounds like a shit vet. I hope he’ll at least be comfortable and die in peace.

@yikesanotherbooboo that’s interesting. Yes I think if it’s a primary disease as it sounds like it was with your MIL it’s very easy to take precautions and lead a normal life. But I’m still so ill I can barely get out of bed so I’m wondering if I need to have another zillion blood transfusions. Definitely does feel like when I had anaemia after giving birth when I lost so much blood I had to have a transfusion but about a zillion times worse. I do hope there’s a work around. I’d I feel like this until I die I shall … well, be very upset I guess.

Hallo everybody! I’m here because my soon to dh (literally - on Saturday) has been diagnosed with a melanoma on his back. We got the referral letter today which refers to lesions in the lymph nodes (felt when they examined him last week) and recommending urgent treatment etc. He’s going to phone up tomorrow to see if he can get a date for the excision but we’re also a bit struck by realising that this is likely to be stage 3 cancer. Does anyone on here have knowledge of stage 3 or 4 skin cancer treatment - maybe some good news stories?

He’s had the thing on his back for years and the doctors said it was nothing to worry about. It started growing and getting crusty so he went back again and they said it’s probably nothing but referred him to the dermatologist. Had the appointment last week and it’s all kicked off!