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 my tummy was never the same after my first drain either, I think it's because as the fluid fills, your organs adjust but then it's all drained in one go so they take up new positions. Has the wound healed now? Thinking of you on Wednesday, every step is one more closer to your surgery, easy to say but so hard when you're in the middle of it.

Hi everyone.
I am new to this thread. I am nervously waiting for results of biopsies, an MRI & a CT scan.
Last Wednesday I had a colonoscopy, they found a mass, which they said they are worried about.
I had my scans on Friday.
The waiting is not easy.

Thank you @Thymeout for the Sholley suggestion! Unfortunately, my issue is that I do like a mosh pit and a good amount of singing and dancing at a gig. My biggest problem is a lack of energy to sing and dance for several hours at a time. I don't think that any security bod is going to allow me to take a Sholley into the mosh pit regardless of how loudly I shout "but I've got cancer mate" at them!

@Fantasea its almost healed, it’s at that annoying itchy stage. To be fair I had a lot more stabbing pains the first week post drain, those have faded now approaching the 2 weeks mark but my lower abdomen feels really yucky and I can see the bloating starting to creep back already (I’m only 8.5st so it’s very very easy to see it as soon as it’s there).

I just keep telling myself that the doctors clearly feel I can afford to wait the month so it should be fine but it’s so hard to believe that. Having this happen during covid is just so much more stressful with the added waiting time for a “green zone”.

@HelpIcantfindaname Hello and welcome! The waiting and fear really is awful. Do you have an appointment to get your results?

@AGreatUsername No appointment yet.

Welcome to the thread no one wants to join @AGreatUsername @Tryhardermum @HelpIcantfindaname
I hope you find comfort in the thread and remember no question is ever too small to ask here. We are also great at listening to general woes.

Congratulations to @TopOfTheCliff on getting to the other end of the country. Such an achievement and a yard stick I won’t even attempt to meet.
@mowly77 That sounds absolute pants, I hope things resolve soon.

@thereisonlyoneofme I hear you on the spending, I put my BUPA claim in on Wednesday for having my radiotherapy on the NHS and I can see it pending into my account for tomorrow. I’ve already spent it all theoretically on various serious and fun things.

@HauntedDishcloth @MothralovesGojira I missed Sleaford Mods with loads of support acts in Nottingham last November and missed Yard Act last week because I just couldn’t face the drive and standing. We’ve still got Guns N Roses in July and Gorrillaz in August so I am hoping to make those.
I’m into week 3 of a sore vagine, after last years sore vagine episode I hoped never to have to revisit it. Nothing that has worked before is working now and it is miserable. I’m perfecting working on my laptop from bed and remembering to keep my camera switched off.

Hi, @MothralovesGojira, many thanks for sharing your story. I’m so sorry to hear about your sister-in-law and the change in yr treatment. My lump was also discovered at routine screening. I had a biopsy that found it was a grade 2, stage 1, dcis invasive tumour. I asked the surgeon about stats for the cancer being found to be worse after the lump is removed and checked compared with the biopsy findings and he said about 10%. It’s a worry but he seemed confident that the lumpectomy histology will confirm the biopsy findings. I’m freelance and the main earner, but i had to give up my contract cos I couldn’t tell them how long I’d need off for pre-ops, the surgery, ct scan, radiotherapy, etc. Obvs, a mastectomy would be disastrous for me in so many ways. My sis had radiotherapy for a pure dcis last year, which damaged her lungs, so that has increased my anxiety. Do u mind me asking what yr biopsy diagnosis was, as I don’t understand how they didn’t find it was aggressive from that?

@MrsPnut have seen gorillaz and they were fab!

That’s good to know, they are DD2’s favourite band, we’re seeing them at all points east so there is a good line up anyway.

Well glad Im not alone on the spending ! Its mostly on experiences/trips rather than objects etc, It is a bit boredom related, I wouldnt bother actually going out to a shop, though I did go to a jewellers to get a chain mended and came out with a ring and then had to get my nails done as they were dreadful and hands best kept in pockets. Justifying it all as its either a treat for good scan news, or a consolation for bad news.

@thereisonlyoneofme also spending money I don’t have like mad!

marina gig last night was great …

now at tate … then home to pick up DD. out and about trying to lift my depression.

Difficult day: went for the clinic before my final chemo and the CA125 hasn’t dropped so we are looking at the likelihood of metastases. There’ll be a scan next week, post chemo, to have a look for where the nasty little bastard might have migrated to. If nowhere, it’s all up in the air as to what’s causing it and what’s to be done. Not good.

@Tryhardermum

Basically, I have just been unlucky in that my tumour doubled in size. The consultant did say it was a tad unusual. I was diagnosed with a 7mm upper inner quadrant grade 2 invasive ductal carcinoma ER - HER2+ and that is what it was when it was removed but just bigger. The size and growth was the game changer when my treatment plan was changed. Hope this explains better.

@mowly77 That's great that you got to your gig!

We miss so much @MrsPnut don't we? We're due to see the Hella Mega and 21 Pilots at the end of next month and stay in London for a few days so I'm hoping that nothing gets in the way of that.

7th chemo done today, phew and only steroids today so half the dose and that is helping so much. DD on 2 week of GCSE mocks, today off, 20 exams to go but going very well so far. And Mr Floof is working his magic and keeping her calm. Same cannot be said for him, he is hyper, loveable but so very hyper. And 2 more chickens arrive on Friday so we will be up to 5 pets. Cleaner is coming for second one off clean on Saturday, well 2 for 4 hours, more hours than I wanted but we need it and should do most of house with that and rest is fine. My radiology appointment to discuss has been cancelled, maybe as 5 more chemos to go and finish date unknown but I wanted to hear from them to book a summer holiday. Will likely have to be in uk now chemo / radio plus gaps will likely go to end August but any holiday would be good. And in stunning news my asd and mute not writing y10 DS appears from GoForSchools to have taken 7 gcse mocks and passed 6 of them and other was a very near miss which should pass next year. There are 3 others he may also be doing / have done / no exam but maths so best subject and got 8 in maths mocks and its level 3 fsmq add maths and geography to hear from and 2 he did not sit. Its below what he should be getting but amazingly good progress and if continues would be enough to get onto A levels in physics, maths and fm. Trouble is he does no science lessons, no stats lessons. He got a 6 in physics, 5 in biology and 4 in chemistry with no lessons, no homework and nothing done at home. But gives some hope. Meet with Head of Stat Assessment on Thursday again for EHCP, having weekly meetings.

Have been invited to May Bumps garden party at Cambridge University, omg I actually will do something that is not a hospital visit. 😂Need to work on shoes, I have lots of lovely dresses to choose from but I used to always wear heels and now struggle with walking and currently go around in trainers. Trying to arrange a meetup for DS and his friend. Yes dear reader that would be 2 social events in a month, this may be a steroid induced fantasy but think its real and am on half steroids now. Last month my life was just chemo. I did have 2 lovely weekends away this year, one in Edinburgh and one in Wales with puffins so I cannot complain. Well I can.

MrsWooster So sorry to read your news. I really hope its not at stage 4. I did have a few weeks when they said I was probably stage 4 but then thankfully the scans dismissed things one by one. I just hope something similar happens. My bloods can be all over the place, I often get dodgy kidney and liver results on chemo but it changes which one is dodgy which week and they don't seem to care too much.

I am not too bad on spending apart from £1500 on the Maine Coon. DD is terrible and now asking for a new double bed for her and kitten. It does make sense but they are not cheap. Hopefully ESA will go to higher rate soon and back pay, I currently get the £77 a week one and had for 4 months. Otherwise its my savings which thankfully I have a lot of but 9% inflation, stock market going down and interest rates at 1% in savings accounts and not knowing if will work again as in village and cancer and SN child or how long will live makes me cautious to go too crazy with spending. Money is the least of our worries though, no mortgage and already enough pension and savings for between now and then though all done on 3% inflation and stock market at 3%.

Love to everyone.

Well done on getting to 2 social things Mowly a third and you could beat me. Hope it helps.

Hope you are having a lovely holiday Haunted

I had quite a quick recovery from mastectomy, 1 to 2 weeks, but no drain in and no reconstruction so have a chopped off breast for a few years thanks to NHS waiting lists, thankfully I am smaller breasted so not too bad and meant cancer was out quicker as would have had to wait 2 months more to have at same time. I would definitely recommend doing the scans radio if there is any way you can Try as they are needed for the best chance of surviving this and best treatment . I am a nervous wreck and have cried and screamed in mine so you won't be the first person or the last to be like this sadly but the important thing is to try and carry on despite the fear. Meds may help, pretending its not happening I use, does not work in scans for me but works rest of time when not on steroids. Could do eye mask and earphones with music if that might help. They are normally quite short at least. I have also been shocked by the total lack of emotional support and mine includes none from GP. I am just so glad have DH at home though he is ASD like so does not do emotions and so I have to get Samaritans when its really bad. Macmillan did give 6 counselling sessions which helped until steroids took it to a whole new level again but thankfully now halved after my screaming episode. I must be in the 5% that go completely loopy on them. Half dose is so much better.

@AGreatUsername someone told me that a wound itching means it's healing. I kept mine covered with dressings until the scabs fell off but when I had a filter put in through my groin and had a similar wound, they said to take the dressing off after 24 hours and air it so I don't know what is best really. I had the same timeline of symptoms you're describing and it really gets you down doesn't it? I was very thin at the time too (not now lol) and mine was noticeably filling again after a week. I had 5 drains in total, 7.5 litres the first time, then 3 lots of 10 litres each and finally just (just) 3 litres. I was frantic with the waiting too and my surgery was delayed by a further 2 weeks as they needed a colorectal surgeon to attend as well. Having all this happen in a pandemic is just another kicking when you're down.

@MrsWooster I'm really sorry to hear your update and am thinking of you Xx.

@MrsPnut and everyone else missing things, cancer is the gift that just keeps giving isn't it? I had to decline a party invitation recently from a neighbour having a big birthday in a hotel, all the other neighbours were going and it would just have been too 'peopley' for me. I cried on and off for about 2 days, not about the party as such but that I'm always having to say no to things.

Hi everyone, new to the thread and still at the rabbit-in-the-headlights stage. Found a lump in right breast, fast tracked and had mammo, ultrasound and biopsy. 2 weeks later told it was ILC with a mass of 19mm - scary but manageable with lumpectomy and radiotherapy. Then an MRI and follow-up appt with consultant yesterday who said it's actually 44mm and there's another one of 22mm and it's a mastectomy. I was in denial before and am now in shock. Do I want reconstruction? Er no, don't think so, just want it all to be over. I've read some of your stories on here and you all sound so brave and grounded 💐

Welcome @Billandben444 to the thread that no one wants to join.
It’s tricky when the plan changes without warning, I remember how I felt when I had an about turn on which of my cancers would be treated first, thankfully my oncologist was great at explaining the reasons for it.

No question or comment is ever to small for here, we’ve all had different experiences and hopefully that will help you get through it.

@MrsWooster so sorry to hear your news.

Thank you @MrsPnut x

Welcome BillandBen That is similar size to mine. Mine was 2 cancers in right breast on surgery invasive lobular x 2, 46mm and 17mm, that though in my case was a downgrade from stage 3 as they expected over 50mm to start with spread into chest and skin from mri and when two cancers they said they normally just count biggest and downgraded it to stage 2B.

It is a shock when plan changes, I was first told luctemptomy plus 3 weeks radiation or just mastectomy and then hormone treatment and in the end its been mastectomy which was really fine for me just one or two weeks with mild pain though get painkillers in for after as they gave me none and fluffy soft cushions or pillows about 3 or so one for under arm and I got a reclining chair but can do a wedge pillow on bed. I did not do immediate reconstruction as they said extra 2 month wait for that and wanted cancer out but if do delay its a very long wait for delayed reconstruction like 2 to 3 years at mine. But it got cancer out and mine had gone to lymph node but not chest or skin like mri said so glad got op when I did even if I look a bit trashed, easy to hide with clothes and got a free knitted knocker and aqua knocker from the charity knitted knockers. I am smaller breasted though, harder to hide if you are much bigger, I am arounf a B to C cup and been OK. Then I had full lymph node clearance surgery, again fine and nhs sent me private for free, gosh that was so nice, stayed overnight, own room and bathroom, lots of nurses, amazing food, more pain but worst over in a week and private gave me a whole carrier bag of meds including super strong ones. Then came the real shock chemo was needed, they do that based on Predict Breast model 10 year benefits, its free online and enter your details and at mine over 3% benefit over 10 years chemo is recommended, you select yes to hormone treatment and put 5 or 10 years. 3% to 5% is a grey area and chemo may benefit so they send it off for further test to see yes or no. Mine was 6% and test I got on nhs with pleading and being terrified of chemo and it came back yes recommend chemo so mid chemo now. Then its radio, which heard is fine, just tired and then hormone tablets.

If there is anything you want to know just ask. I am definitely not brave or grounded but when the options are to save your life and you have kids especially I have 2 one with SN you have to get on with it really and work through the anxiety. Distraction helps, Macmillan have counselling via bupa and we are here for you and you meet people with cancer along the way. I have 2 amazing ladies who message me all the time. Do you have children? Take care. I am a bit chemo brained so excuse my rambling.

If you’ve been following my story, my Dad has been ill . He is in hospital and has contracted covid. It has gone from this morning for my step mum being told don’t go in for 10 days, to visit anytime with PPE.
They have advised her I shouldn’t go in but they wouldn’t stop me.
I have my first Zoledronic acid infusion tomorrow at 8.30.
He is 3 hours away.
I feel shit but I cannot have my daughters risk losing me as well as their Dad this year, coping with me having cancer has been bad enough.

@Billandben444 welcome to our lovely thread but sorry you find yourself here. I've certainly not brave or grounded and have spent most of the last two years as a ball of anxiety. I've had so much support and reassurance on here so ask away and hope we all can help you.