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

In case it's useful, I use the Insight Timer App for guided meditation and listen to Sarah McLeod cancer immunity support which makes me feel great.

Sarah Blondin is always insightful and has an incredible way with words and I love Lou Redmonds - stop caring about what other people think when I was losing my hair.

@ChickandLamb - the waiting is just the worse. I actually found the MRI quite relaxing. I took the view that whatever was there as there and it would just help them attack the problem.

I’ve started with the laxido sachets this weekend. Shot method was a great tip.

My day to day anxieties have too faded away since this diagnosis. The mediation sounds interesting as I’m still running on adrenaline and trying to process the events of the past month. It still doesn’t feel real. Conscious I may need more than a fighting spirit a few months down the line.

@ChickandLamb I have only just discovered hiking! Coffee & cake have been a staple part of my adult life.

@quinin I have started using Headspace app. which was recommended by my Maggie’s counsellor. They have all sorts of options that you can dip in and out of. Plus they have Coping with cancer module which I am ploughing through at the moment. One of the co-founders, Andy Puddicombe, went through cancer himself (and was also a Buddhist monk for a number of years) which to me makes all the difference - he is also the narrator of cancer and meditation modules. I know it shouldn’t but I feel he knows where cancer patients are coming from.

I thought about asking GP for medication but thought I would give meditation and mindfulness a go first. It’s not easy, doesn’t come naturally and it requires a lot of work on my part but I feel I will get there.

I still tend to burst into tears quite often. And I agree about limiting/getting rid of social media/news apps./anything that requires too much thinking. Light options all the way for me, too! I end up watching lots of cute animal videos, something which I have always avoided/tended not to watch, but now it’s one of the few light relieves that suit me at the moment.

I will try headspace as haven’t tried any of those type of app. I do listen to podcasts such as DID’s and those by Dr Rangan Chattergee while walking the dig. There are tons to listen to but the one by Edith Eger stood out when she said something along the lines that ‘there is no hierarchy in trauma’ meaning that a real fear to you is that - it’s real and no less important than her actual experience. This was something of a revelation to me after being brought up in the vein of ‘get over yourself, there’s always someone worse off than you’.

Thanks Balkan I'll take a look. I just found an interesting article in the Guardian about Andy Puddicombe and I do think it makes a difference from having gone through a cancer diagnosis as there is no end and that changes you.

Funnily enough I watched animal videos last night with DS having never had any interest before but really enjoyed them! It's a new appreciation I think for life and nature I think. I'm rewatching friends and loads of 80's movie like Ferris Bueller's day off which are keeping me entertained.

@JeanLannes the C word was first mentioned in September 2020 for me and I still feel as though it is all happening to someone else. I have also tried the Laxido shot as suggested my @MrsPnut - what a difference that has made, so much better!

@balkanscot I also still burst into tears very easily, I don't seem to get any warning like I used to.

Glad the laxido shots are working, it's so much easier to have one horrible mouthful and then drink a pint of water to take the taste away.

That was a great tip @MrsPnut. I have the orange flavour even though DH was under instructions to change to lemon and lime at the chemist. From those with experience is it worth taking one sachet every day during chemo? Or is it just a case of judging on a day by day basis? I took 3 yesterday and one the day before and it’s already made a difference.

@MrsPnut brilliant tip! I think I need to use a bit more water next time, my shot was still cloudy when I drank it but when I used to make it up with a whole glass of water, it was clear. Are your shots cloudy or do I need to wait longer?

@JeanLannes I have the orange flavour and they are revolting. Did you buy yours? You can get your GP to prescribe 30 sachets at a time and have you applied for free prescriptions? It is my understanding that Laxido works a day or two behind so you need to get a headstart. Perhaps take 2 spaced out the day before chemo and for the next couple of days. If you currently have success on your regime then perhaps stick with one a day for the next few days, then one every other day? It really is trial and error and you are running about 2 days behind. For me, I would rather be on the slighter looser side than trying to shift a boulder which is giving me contractions every 15 minutes!

I stir it until it is clear, I use a normal sized glass but put only a little water in and then the sachet.

@MrsPnut hot or cold water?

@JeanLannes I'm quite an Edith Eger fan - I've got The gift and The Choice.

I should try Headspace - I haven't been very patient with meditation but I'm sure it would be good for me if I could crack it. @quinin I haven't seen Heal but will check it out and the other apps/people you mention. Anyone interested in Herceptin I watched the dramatization 'Living Proof' Amazon Prime about the dr developing that drug.

Jan 2020 I got into the Miracle Morning programme developed by Hal Elrod. I had quite a good system but couldn't keep it going through treatment - although I did keep a few bits of it and would like to re-instate it properly. As it happens, Hal is a major survivor - initially from a near-fatal car crash then again from a very aggressive cancer. He's quite an inspirational guy.

More recently I got into manifesting - which I have a notebook for. I find reading back through the ideas/plans part in particular very helpful to keep a broad overview of my situation in mind.

Anyone else got either of the following after surgery?

I've got some seroma-type swelling on the node surgery side. I get some relief with a hot pad - I don't think it's getting either better or worse. It's not a bad of fluid - just swollen and rather painful. Not due to have a check until Friday.

I also seem to be reacting to the surgical glue - the itching is quite something but not all over - it's worst in my cleavage. I've got some hydrocortisone oil and taking Claritin but it's still pretty itchy.

Can't get my arm up more than horizontal - hoping that will improve. Not the end of the world if I don't get full mobility back but I need more than this.

I'm phasing back into work which is quite challenging - mainly just hard to focus.

@FizzyOrange cold water
@Acinonyx2 I still have swelling on the node removal side and my new best friend is a microwaveable stegosaurus.

MOAN ALERT

Eugh I am so done with hospital.
I have been here since Tuesday night and my normal 4/5 day stretch has elongated out interminably somehow. They didn't finish pushing the last of my bags of chemo through til 2am last night and then woke me up for kidney protector drugs at 5.45 so I am beyond shattered. I've found this round has knocked me far more than my previous two with lots of breathlessness, swelling and have almost completely lost my appetite (normally the steroids make me eat like a horse).
I've finally got a pint of blood up now to try to send me out with a bit of vim, been waiting all day for it and being woken up every single time I manage to close my eyes and nod off.
I so badly want to go home and eat something nice and simultaneously sleep for like 3 days!

Can I ask if you were told to have any dental treatment before chemo?
I had no idea, and am having trouble with two teeth that are extraction jobs as they are more filling than teeth. Im also a terrible coward so in the normal run of things would have sedation when having work done.
Got two more chemos to do then on Niraparib I think. Wonder if this info will also apply to that. Anyone any experience ?

Sorry thats a general query not a reply to anyones post. Why cant you edit !!

@MrsPnut did anyone suggest draining it? How is your arm movement?

@Babamamananarama the weird way people schedule things 24 hours a day in hospital is just bonkers and a form of torture. Hope you get out soon.

@thereisonlyoneofme I was advised to get dental work done first but is does partly depend on the chemo/drug so perhaps check with your oncologist? I am a BIG dental coward!!

@Acinonyx2 Mine is just swelling but they say it will go down eventually. They were concerned about me burning myself with the heat but once they realised it was a child’s hottie they calmed down.

@Babamamananarama That was the worst part of my overnight stay. Waking me up to do obs and trying to take blood at 5:30am. Piss off and leave me alone. Also when you are handing over to the next nurse don’t bother complaining that I only have one vein that blood can be taken from and you failed twice, especially when I can hear you.

@thereisonlyoneofme I had a broken tooth fixed before I started treatment.

@Babamamananarama I hope your vim (amazing term) returns to you soon and you're home in your own bed. 5 straight days sounds horrible and you've done well to keep your pecker in place til now. Hats off to you.

@thereisonlyoneofme I scheduled a dentist appointment before and had a hygienist appointment brought forward before I started. I used to be on a monthly plan and got four hygienist appointments a year but suspended that for now. I'm paranoid my breath stinks because I was told I can't floss and only use a soft brush although I'm cleaning more often and because I'm drinking so much I'm not getting such a dry mouth. I was given a high fluoride toothpaste by the hygienist to use.

The sores in my undercarriage are getting worse. I've used sudacrem today but it's a call to the care team tomorrow. This is not a place I want infections.

Also knackered - slept so much and fed up today.

Sending best wishes to you all.

@PhannyPharts I also worry about my teeth not being cleaned properly.

@FizzyOrange - yes the orange prescribed from the doctor. I don’t find it too bad by following the shot method. I didn’t realise I could get free prescriptions! I’m surprised the doc / comm nurses / bcn didn’t mention it. Thank you for letting me know.

@Acinonyx2 hope you make some headway with the glue and swelling tomorrow. All sounds uncomfortable. I loved the choice but didn’t buy the gift because of the mixed reviews but I’m guessing you’d recommend? I am hoping to watch living proof tonight with DH who is in my good books for doing the ironing. I’ve worked most of the day abs it’s been good to (try and) concentrate on something else.

@Babamamananarama - your stay sounds thoroughly miserable and I hope you’re now safely ensconced at home.

Week 2 of Chemo for me tomorrow. Port still feels sore but no doubt they will take a look. Don’t feel much like them using it. Am interested to know (and have fingers crossed) that the filigrastim has made a difference to my neutrophils.

Greetings all. I've just had a massive catch up on the last few days posts. While the weather was good I was outside gardening cycling and playing with my boat but now it's gone back to winter gales I am indoors again. I'm pretty stiff and sore which I think is the anastrozole hormone blocker doing its thing but I also have an arthritic hip demanding attention. Go away - I can't face a joint replacement this year!

@ChipsAndKetchup welcome. I went through treatment at the same time as you for a HER2 + and ER + breast cancer and am now recovering after chemotherapy, lumpectomy, axillary clearance and radiotherapy. I'm still on Herceptin for a few more months.

I keep checking my mental state as the nurses keep asking anxiously if I am okay but I seem to be as resilient as ever. My main complaint is my wrecked fat body with the dodgy hip, mended broken ankle and the arm that is at risk of Lymphoedema. It all hurts at different times but exercise is helping and I have lost about 9kg so far. I am so fed up of the overweight unfit person I have become but I can't trade myself in so will have to keep working on getting fitter.

@Acinonyx2 I am sure I was allergic to the Dermabond glue. I had a fine rash after surgery and it itched like crazy. The surgeons didn't believe me but I recall I had similar after gallbladder surgery too. I picked all the glue out of the wounds and gave myself a nice infection which I don't recommend. I used Piriton and Betnovate. Vaseline seems to dissolve it nicely too. It's all healed up after four months anyway.

Good news about scans for most but @MrsPnut you have had a tough time. Fingers crossed the next one is encouraging. Nobody wants chemotherapy but at least it seems to destroy the enemy pretty effectively. Sending hugs xx

I'm starving now so off to cook up a healthy supper. I could really enjoy a big curry with all the side dishes and poppadums and nan bread and little sauces. But that's what got me into this state! Will power is needed Top!

Best wishes to all and @Babamamananarama I hope you have escaped home full of vim. Or at least to a quiet bedroom where you can sleep for three days!

To those saying you did not know you could claim free prescriptions and others please check if you can get any other benefits. My daughter was entitled to I think either ESA or PIP ( may all come under Universal Credit now) as people with cancer are treated as a special group if not able to work and she did not know about this until someone told her so worth checking.

Thanks @TopOfTheCliff. My mental state is very much up and down. I've had sore ribs for a week or so and convinced myself it's back. The oncologist assured me it's not and now the sore feeling has gone. My head is typically all over the place.

If you're interested in a read, my friend who is a stage 4 melanoma survivor sent me this document which is worth a look.

www.midyorks.nhs.uk/download/doc/docm93jijm4n7096.pdf?amp;ver=8839

Hope your hip feels better soon. Have you tried acupuncture?