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

@TopOfTheCliff Belated condolences. Jealous of your immaculate kitchen! I am trying to convince DH to instal new flooring (engineered wood) in 2 bedrooms & living room - at the moment we have ancient, sanded & varnished floorboards which are falling apart. If you don’t wear slippers (I am looking at you, DH & DS) the chances of your foot ending up with a big, fat splinter are pretty high. He keeps saying ah, there’s no hurry (after living in this place for 11 years!!!), we are not moving. But this fecking recurrence has made me so, so “Feck the future, gimme now!” So am determined to use up some of my savings to pay for it (Georgian tenement = massive rooms).

@MadamBuxton My stomach is usually as strong as the proverbial ox. I have never suffered from travel sickness. I do detest throwing up, so when in the throes of EC I was trying to “push it all down” which made the whole experience even crappier.

@MadamBuxton wrt chemo and being nauseous I am normally a vomiter- hangovers, different foods, travelling, headaches all cause exorcist like emissions.
I told my onc team from the start and was on apretant and ondasetron straight away. I didn't have any post chemo nausea.
However I was on weekly cisplatin not the BC protocols.
The thing that did make me vomit was being given IV Dex as a bolus rather than an infusion. Again it was like a scene from the exorcist 🤢

I too am a vomiter, I can be sick just brushing my teeth. I’ve never been travel sick but migraines, hangovers, just feeling a little dodgy, morphine after my surgery all caused an outpouring.

Like Bri, I had weekly cisplatin and didn’t get nauseous but used aprepitant afterwards. With FEC, I have aprepitant, ondasetron, and metacloprimide to use if I need to. I’ve used aprepitant and one ondasetron but knowing I have them there might be helping me feel ok.

@TopOfTheCliff I’m glad your brother has come to ease some of your load, and I envy your tidied kitchen.

@Quinin and @ChipsandKetchup thanks so much for your replies about Docetaxel etc. I feel a little less fearful now.

I’m struggling with my baldy head. Hats really don’t suit me and when my head is bare the coldness almost feels mentholated, like I’ve spread toothpaste over my head. Anyone else feel like that?

Hi @MadamBuxton. I’ve just done 2 rounds of EC. I was given a super tablet for nausea that’s meant to last 10 to 12 days but I wasn’t prepared for the wave of nausea that hit me on the first night. Taking extra Metaclopromide helped. As others said, keep on top of the nausea. EC hasn’t been too bad. I’ve had constipation, sore tongue, tiredness in first few days and mild nausea at the beginning. I feel hungry a lot which is quite a nice feeling. Still manage a thimble of wine with my dinner!

@Lunificent I hear you on the hats. I struggled massively with what to do. I bought a £400 wig and didn't wear it once. Hats looked daft on me but I did end up wearing a LOT of slouch beanies I got from Amazon. Just thin sort of ones but they were so comfy.

If you want to PM me anytime I'll show you some pictures. Can always chuck them in the post to you if you want them.

Re Docetaxal- the chemo nurses would say to me that in their experience, Docetaxal is much better tolerated than EC. So if you're coping with EC you'll sail through Docetaxal. Just having no nausea for me was a godsend.

@MadamBuxton - my BCN recommended painting my nails black as it’s the UV light that can affect them. I haven’t cold capped but have frozen feet and hand mitts on to help with neuropathy. I cut toes from a pair of socks and fingers from gloves to go under them.

I have really gone off tea and coffee - it just tastes different. Lots of water helps flush the toxins through though and I feel worse when I don’t drink enough. I have had both diarrhoea and constipation so finding a balance is tricky.

@JeanLannes immediately after treatment I go off tea too and I'm normally a three cups in the morning kind of girl. Then about a week in I fancy it again and off we go. Tea ahoy.

Currently sat in the chair waiting for the Red Devil.

Hi everyone

Just after some advice. I was diagnosed with cancer in March 2020 and at the moment everything looks positive and shows that treatment has worked.
I struggle to talk about when I was diagnosed because it was just before lockdown in a room on my own with just the consultant and I think its affected me. I find it difficult talking about anything during that time. This morning in work I was talking to my colleague about something work related that happened the date I was diagnosed and I just keep going over and over in my head things that happened around that date.
Is it normal to feel like this?

Hi @user673419 I'm not in the same position as you as I'm still in treatment but I find it very hard to think about that first dark few days now and they weren't that long ago (March of this year). I'd say what you are experiencing is understandable. Have you been able to access any support like counselling.

Be kind to yourself. You have been through so much and I'm glad to hear your treatment has gone well.

I hope you don’t mind me posting here on behalf of my sis. She was diagnosed with breast cancer earlier this year (she’s only 34 😔) and after having surgery she is now about to start chemo (EC then Docetaxal) she just wants to know what to expect and if there was anything that you’d recommend to help her get through it?

My heart is beating really fast today. Day 5 after 2nd round of EC. Could it just be that I’ve had some coffee. Going to drink a lot of water and see if a nap helps.

@Namechange13101 If your sister is on Facebook them I would advise her to message the younger breast cancer network page.

user that sounds really hard. Has anyone ever suggested that you might have PTSD?
A good friend of mine developed PTSD in response to her cancer diagnosis. It is such a shocking and traumatic thing to happen.
I'm a massive advocate of accessing therapy/counselling - have you been able to have any?
Please don't struggle alone with this or try to bury your feelings. It sounds like perhaps you could do with some professional help to enable to to process the experience.

Lunificient have you looked into wigs yet?

I was so dubious about them but allowed myself to be referred to the NHS wig service. It's taken an aaaage (was diagnosed and referred end of Feb) but I picked up my wig this week and honestly it's a game changer. It has just made me feel so much more normal and 'myself'. I've got the same one I think as Pnut - the Rene Muse Breezy in dusky rose. I'm loving having pink hair.

I've also started my Safe Fit sessions and they are making a huge difference - thanks Top for the recommendation.

I'm starting to dread my next chemo round which will be from next Wednesday. I don't want to go into hospital again. I don't want to be stuck on a drip for 5 days feeling progressively more shit. I don't want to eat any more revolting hospital food and be stuck in a room without even a view out the window. Moan moan moan but I have unfortunately lost my zen about it.

@user673419 I think it’s very normal (if I’m anything to go by!). I was told I probably had cancer in December 2018 (so had to do the wait for tests over Christmas). I get very down when the anniversary draws near.

Also, because I’m clear but on a watch and wait regime I get very anxious around my scans.

It reached a peak last October so my oncologist put me on anti depressants and referred me to a psychiatrist. I remember her saying to me at our first session “you have suffered a huge physical and mental trauma so it’s not surprising you feel like this”.

Although we ourselves (and our families!) might think “I’ve got over the cancer so why can’t I get over it?” I don’t think any cancer professional will think like that.

So if you’re struggling please reach out for help

@TopOfTheCliff sounds like you are getting fitter by the day! Hope to join you soon.

Surgeons were yet again peering in shock and awe at my itchy breasts - they reckon at least another couple of weeks to settle down. This will delay radiotherapy and I won't be starting new chemo until after that so I am slightly anxious given my rampant node involvement. Y'all know how I hate chemo but I don't like thinking of those happy little cancer cells nesting around my body.

@Babamamananarama I hear you. I feel sick every time I go past the chemo door and my heart sinks when I think of all the visits looming. Of course we will just get on and do it in the end but I always have a an ear for a chemo-moan.

I was generally really sick and miserable for 5-6 after every cycle but it didn't kick in for a couple of days due to the steroids etc. Generally I was very bouncy and active the day of & after chemo. As the cycles went on recovery got slower - moving up to the third week.

But I don't feel any residual fatigue or illness now, 2 months on (just a little neuropathy and my nails are still affected). I was looking forward to this lull before radio/chemo - but I'm incapacitated by the intense irritation when I move around. Very boring

I did get a whole heap of bedding plants the other day with aspirations to plant them this weekend with dh's help. And I managed two and half pieces on the guitar.

@user673419 sounds like a very understandable reaction to me - I second the counselling suggestion.

@JeanLannes I've had a lot of pelvic radiotherapy which causes extreme dire rear. My chemo caused constipation. I cannot recommend lepicol enough to balance out the two. It's available on Amazon in sprinkle or capsule form and it's been amazing. It's normally a supplement for IBD sufferers. My onc team were fine with me taken it. Since I started lepicol I've had to take no laxitives and I've taken loperamide once.
Oh, and if anyone has a fooff of fire or a raw bum then the cavilon barrier products from 3M are the dogs bollocks. I used the cream and the wipes.

@user673419 I was diagnosed in 2020 and I'm approaching my 1st 'cancerversary'.
I look back constantly, how could I of had that devastating diagnosis, treatment ,surgery and life changing 'ball of crap' in just 1 year?
I also received my diagnosis in a room with a surgeon and no other support it's traumatic.
I have no great words of wisdom but our reactions to it all are completely normal. I'm about to start counselling to start dealing the issues that I have been left with.
I'm also finding being out walking listening to music or podcasts as I stomp round helps. I also challenged myself to start running and I'm doing couch to 5k which really helps me. I'm my head I'm a graceful gazelle, in reality I'm a red puffing steam engine

She is on Facebook so I’ll get her to look that group up. Thanks @MrsPnut 🙂

User I think it completely normal to feel that way, having cancer is such a difficult thing to process. I still can believe it's happened to me. My brain just can't compute it. I also really struggle to talk about it, I've never cried so much as I have in the last 10 weeks.

Some therapy will help I'm sure. I've been having energy therapy weekly to process the shock of the diagnosis out my body (among other things). If I didn't have cancer before that whole experience would have induced some cell changes. It was life changing.

My big news from today is I had the results of my PET and CT scan and there is no evidence of disease! The tumour has completely gone and nothing was seen in the nodes and no metastasis was found. They couldn't see anything. I can't quite believe it.

@quinin fantastic news! I'm delighted for you

@quinin fabulous news, I'm so pleased for you.

@BadEyeBri - thank you - I will look that up.

@quinin - so so pleased to hear that news.

@Acinonyx2 I am sorry you are still suffering glue allergy. I used Vaseline to dissolve the glue in my wounds and picked it all out. It felt much better! Also I took piriton for a week or so.

@Babamamananarama good for you getting going with SafeFit! It feels so good to be moving and stretching doesn’t it? My coach has become a good friend. For my brain I am doing French lessons online and I find myself practising verbs whenever I am bored in a waiting room. I’m trying to master the subjunctive but I have no idea what I’m doing!

I seem to be remarkably cheerful and balanced. I keep examining myself for signs of distress but I am eating well, sleeping well, much less pain and no anxiety. I think I am just one of those weird people who thrives under pressure. I keep getting nice cards and flowers from people worrying about me and I feel like a total fraud.
My dear widowed DM has just renewed her passport which is baffling. I wonder if she has plans to be a Merry Widow cruising the seas.

Great news @quinin!

I am only two days into diagnosis so think I am still processing the shock of it all. I have found that I am bounding about sorting all the things that need sorting with loads of energy, running from one appointment to the next and keeping relentlessly cheerful and positive for the benefit of my kids. I'm even looking forward to my surgery as I just want to know the cancer is out of my body. Then I find myself crying at random times and worry that I'm squashing all my feelings in an effort to cope with it all and not break down.

My MRI showed extensive DCIS today so the plan is for a single mastectomy with sentinel lymph node removal and reconstruction. Then I can decide if I want the other side off as well.

What I'm really struggling with now is the worry that it has spread as I first had symptoms a year ago but the mammogram and ultrasound were normal so I was told not to worry all was fine. The consultant was as shocked as I was when the biopsy came back positive and now the MRI shows lots of affected ducts. It makes me feel sick to think I have had cancer in my body for a year. And now every time I get pain in that breast I know it is the cancer doing it so it is now really freaking me out and I can't think of anything else. I just want the days to pass quickly before my surgery. Also worried that something might go wrong and the surgery is cancelled. What if my consultant gets ill or has to isolate for covid or the anaesthetist is no longer available? I don't think I could cope mentally with waiting any longer.