Cancer Support Thread #79 Newbies Welcome

[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

@NogbagTheBag Cancer and chemo can indeed do one.
I can't remember how old your kids are but I let my youngest daughter's form tutor know and also her favourite teacher (art) and they have been looking after her at school. She has a free pass to go to the art department whenever she wants and can hang out there at lunchtimes if she needs to. It helps her to have someone to talk to if she needs it.

Hi @feelinggeriatric- it hadn’t occurred to me that you could get pain from an implant. I feel it will be just my luck for the same to happen to me. Surgery for me is likely to be October, all going well.

I’m Interested in the discussion about cancer cause. My consultant told me it was was simply down to hormones and luck. My life has been ok but there have been many stressors: from childhood neglect, teens in care, teaching in tough schools, and home issues now e.g. my child’s mental health. I’m a fairly happy, steady person, but these things take their toll. I also think I’ve drunk too much. Not a binge drinker, but I was drinking half a bottle of wine with my dinner every night (not any more).

On another topic, I’m having my second breast scan tomorrow. My first was just before I started EC. My 2nd EC was on Monday. Does anyone know if it’s likely that the tumour will have shrunk? Any idea of what is the typical change in size, from one scan to the next?

Hand up here @NogbagTheBag I had FEC-T and it is reckoned to be “Tough but doable”. The FEC bit is like a huge gin overdose for a week, with some sneaky little white cell booster injections that make you feel grim. @Lunificent might be pleased to hear my two lumps disappeared after two rounds of FEC never to return. After each dose you get a good week to lick your wounds and build up to the next one.
My hair fell out around dose 2 FEC but grew back during the T bit. T is either Docetaxel or paclitaxel and is different. I found I had allergic reactions on the day of treatment so was dosed up with steroids to the eyeballs. I got more gut upset with T, sore mouth and bum, and was slowly being ground down but here I am six months on with a good head of hair and feeling pretty normal again. The best thing was I had a complete response to chemotherapy with no trace of cancer found at operation. It was definitely worth the trouble. Il vaut la peine as my French teacher says.
Hopefully you will be offered a PICC line which saves a lot of grief. We can talk you through that too. All this is manageable and the nurses are brilliant at keeping you going and countering the side effects. I couldn’t believe I started treatment about a mile from home in the middle of a pandemic free of charge and within two weeks of diagnosis. I love the NHS!
Regards to all
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@NogbagTheBag the BC ladies can advise you better on side effects but I do understand what you mean about wanting the chemo to start so you know what you're dealing with. I was a nutcase before my chemo started, I had been kept waiting for 3 months from my initial referral to the gynaecologist but I was still terrified. One thing I will say though is that once I began, I felt I was doing something about it, the waiting and worrying about it is the worst thing.

My Bc chemo was a long time ago and no idea what drugs I had plus I think they no longer physically inject (which was the worst bit). I had a newborn , and even then i found it manageable, not as horrendous as you imagine. No walk in the park but it's culmative I believe so certainly the first few months are ok. I had to go back for more anti nausea , and plan for constipation (think about diet). I had about a week each cycle when I had to sleep all the time basically.

I wouldn't be rushing to have it again but that's mainly as my veins are shot now and I hate having cannulas put in .

My hair fell out , that wasn't a huge issue - I tried the cap for about 20 seconds before deciding I wasn't that attached to my hair !!

@Lunificent it's definitely not pain. I don't want to put anyone off trying it. And I've had countless referrals to get it changed / have a flap / remove it but always wimped out as can't face more surgery with all the palava as I don't live with another adult so an op is quite involved logistically. But the team involved were absolutely willing to do whatever I wanted to sort it . It's mild discomfort .

Is it possible to get ascites 2 months after a full debulking for OC?
In a week I seem to have put on 2kg in weight ! Bit devastated as came out of hospital 5 kg lighter and its been lovely getting in to some of my clothes that havent seen the light of day for a couple of years.

Returning to this group after posting early in April when I had a cervical cancer diagnosis. I have now had the MRI and CT scans which showed nothing further of concern and I had a radical hysterectomy last week, chosing to have tubes and ovaries removed as well as the uterus and the cervix. I am waiting for the biopsy results from all that was removed.

I am feeling as good as can be expected physically after the operation but it is the mental health that is taking a battering. I am taking in all of the advice offered on this thread and looking at some of the meditation apps that I am sure will be useful for me. Like many of you, i am an anxious person who worries about everything but from the outside, most of my friends and family would never guess. I can't help but wonder what that anxiety caused. I eat heathily (paleo) and exercise a lot, I am not overweight although at the upper end of BMI since peri-menopause.

I have decided to give up wine while I am recovering: I wasn't a binge drinker but drank half a bottle too many nights, especially after diagnosis. I am hoping lack of booze, coupled with meditaion and some good supplements (including B vits, magnesium, Vit D and collagen) will ease the anxiety.

I have got huge comfort from reading all of your posts and knowing that I am not alone.

to all those going through this journey too.

Thanks everyone, it's reassuring that it's doable!

@MrsPnut we have told the kids school, they are keeping an eye on them. I think at the moment they are enjoying school as a distraction, but we'll see how it goes once treatment starts.

@FizzyOrange I think that's exactly it, I want to be doing something to fight this, I want to get started ASAP, good or bad. I just want to feel like I'm dealing with it.

@TopOfTheCliff that is helpful to know. I have no idea how it will be administered, no one has discuss that yet, does it happen on the day of the chemo?

It has been just over a week since diagnosis, I start chemo in a week and a half. I too love the NHS and I'm so glad I have access to all the healthcare I need without a big fat bill at the end!

I think the speed it's all happened is partly why my head is spinning a bit. That and having a 8 month old.

@feelinggeriatric, doing it with a newborn must have been frightning!

Having a baby and cancer at the same time does seem unfair to anyone, I wish it was like jury service and I could just defer it for a couple of years. I'll take the cancer later, just not when I'm trying to make the most of the squishy baby cuddles before he becomes a toddler! I know no time is ideal, cancer is always unfair.

@NogbagTheBag if they are going to offer you a PICC line you will get an appointment a day or two before the first dose. It is very painless but involves an XRay to check its location. I had mine after the nurse briefing and two days before dose One FEC.

Just been for a fun bike ride in the pouring rain with my cycle club ladies. I do feel better for exercise!
Regards to all
Top

Got through the weekend ok then had a bit of a meltdown this morning worrying about what the scans might show and going through the chemo. Started looking at head coverings and spent half an hour properly crying about it.
None of us deserve this shit!

No wonder you had a meltdown @Vinorosso74 looking at headcovers - they're either shown on awful fake plastic heads or on elegantly beautiful boho-looking models who'd look good wearing a hin bag! I found it really depressing. I concluded there's nothing properly nice or decent unless you suit the 50s look with a cute headscarf tied at the front & have the whole look to go with it. The next least worst options cost nearly £50 or have to be ordered from the US. I have got cheapies from Amazon/ebay & a couple are OK but that's out of literally dozens I've tried. My best thing is a "halo" wig under a cap or summer hat but that look's not suitable for all occasions. I need to go to a wig fitting but won't be up to it mentally til at least some time after my surgery

@ToastCosILoveIt welcome back, I also had a total hysterectomy due to OC but mine was 4 weeks ago. I am perpetually anxious but did have a little reprieve for the first week after I was home from hospital which I think was due to the relief that it was over. Were you given any advice regarding activity following your surgery? All I got was a leaflet which says not to lift more than the weight of half a kettle for 6 weeks!

@Vinorosso74 I also am not surprised you are in meltdown, the head coverings have caused me a lot of worry and upset. My hair was never that nice and I didn't think losing it would make me feel as dreadful as it has but for me it is confirmation to me and everyone else that I'm ill and I hate it. I have browsed through endless websites looking for wigs but have decided against it as I think I will just feel too silly wearing one. Another thing that worries me about a wig is that my scalp feels very sensitive even with a little regrowth (this will go in a few weeks as I restart chemo this week). I have bought some ready constructed lightweight turbans from Amazon which will do me for now. I was artistically rearranging silk scarves to begin with but they kept working loose and I feel self conscious rearranging them.

@thereisonlyoneofme are you sure the weight gain isn't due to eating more now that you're home? I came out of hospital after my OC debulking about 4kg lighter but have already put it all back on in 4 weeks and I hardly ate for the first week. I am at just over 1kg heavier than I was a week ago but I have presumed it is due to me being back on the biscuits and snacks. I think 2 months is very soon for the ascites to be back. My abdomen still looks rather swollen and puffy, I wasn't expecting a washboard stomach but I am a bit disappointed it still sticks out as much as it does.

Had my appointment - the consultant just put gloves on and felt the lump and had a look and said it doesn’t look bad however he’s diagnosed me with a benign salivary gland tumour. Have to go back in 6 weeks to see if it’s got any bigger and if it has then it’s turned malignant

Spoke to a lovely Macmillan nurse. She doesn't think my ache is anything to worry about. She said bone pain develops fast and wouldn't be in that place. I'm 12 years on from super aggressive cancer too, so odds are so low that it would come back now as a met. Cant quite process this yet and feel the relief but hoping to feel it soon!

So I'm just waiting for my womb biopsy date. Having another breakthrough bleed - which I guess might explain my huge weekend wobble . Refusing to panic over this though. Also consultant told me i was high risk due to bc and nurse said that was basically bollocks.

@TopOfTheCliff I followed your suggestion this morning and wiped around with Vaseline to see if there maybe some leftover traces of glue left behind. Definitely improved a couple of troublesome spots. Reaction has been quite severe - surgeon has me on steroids and antihistamines and reckons it will be another couple of weeks to get it controlled. Feel like I'm encased in sandpaper and missing my walks

@Vinorosso74 you'll get through chemo. The problem is the shifting goalposts - you think you're on one road and find yourself on another.

@HauntedDishcloth when is your surgery - what kind are you having?

@FizzyOrange I had lost weight but it's returning!

@AlbertCampion are you doing it this week? I had yogurt/blackberries/banana for lunch. It's always the stretch to dinner and after that is toughest for me. If dd leaves any of her dinner I won't be able to help myself.

@MamaOl93 the good old watch and wait strategy. Hope you are not too anxious.

@feelinggeriatric I'm sure the ongoing anxiety never leaves but hope you get some reassurance soon.

@Acinonyx2 is that a thing? Not gonna lie I feel better for finally having an appointment but knowing it’s a tumour even though it’s benign is scary.

@MamaOl93 it's a thing in medicine generally - but with good reason.

On the subject of head coverings, I now have a whole pile of different hats, caps and bandanas that I have tried! But the most compliments I've had is when I take one of my everyday scarves (long, lightweight, neck scarf), and tie it round my head. I just fold it in half lengthways, place the centre over my head and tie the two ends into a knot at the nape of my neck. It also has the advantage of being soft on my head which is still v sore.

I did try a wig but I found it was just too uncomfortable - tight and hot and just not me.

@Acinonyx2 Yes, I have started today! A small selection of salad leaves for lunch, then some steamed white fish, broccoli and carrots for dinner. Plus two cups of white coffee. That's my 500 calories and I am peckish but not ravenous at the moment.

I did some research and I think it is ok to combine 5-2 with 16-8, so I am trying that. The downside is that means I now can't eat anything til midday tomorrow, which is a daunting prospect.

@AlbertCampion your dinner was rather more classy than mine - dd and I had fish fingers. I also feel quite OK. I don't usually eat until 11-12 am anyway. Which is your next day?

I knew I would have to have a wig for my online summer school. Another 5 mm or so and I might be ready to launch my menacing skin-head granny look.

PS I weigh myself same time every Monday morning to track changes. Sometimes takes a couple of weeks or so to see any but I can hope. Don't mind if it's slow as long as it's decreasing.

@Acinonyx2 I was going to go for Wednesday but as radiotherapy starts then I might postpone til Thursday. When's your next day?

Tbh I would have preferred fish fingers - the white fish was v bland and unappealing!