Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

Sorry to hear that Nomorebear that's the same as I had, lobular and 5cms and another of 1.7cms and a LCIS and in 1 node with a then 14 and 15 year old. I am 1.5 years post treatment now but if you have any questions fine to pm me. Sending love.

Hope the lymph node clearance goes as well as it can Hellon I had that too as a second op and haven't got lymphoedema, exercise is important in minimising risk, initially the arm ones then did swimming. My mastectomy was also a bit lumpy but they redid it with the lymph node clearance and was better.

@catmomof3
Good luck with your PET scan this morning!

I always found the travelling exhausting as I live about 1hr20 from Waterloo as the train goes and then a tube/bus for 20-60 minutes to reach a venue. Which venue is your DD going to? I have always found door staff to fab and all of them have been great since I got cancer. If I ask then they do sometimes let me in quicker or let me take in chewing gum (dry mouth) or find somewhere for me to sit if I need it. I really should apply for an Access Card which would make my life easier all round.

What is an Access Card, @MothralovesGojira ?

@KentishMama
It's a card valid for 3 years which indicates what type of help you need to access entertainment venues. You need to have a recognisable disability or PIP/DLA to qualify - such as wheelchair user/visually impaired/unable to queue/disabled toilet facilities/need a carer+1 etc. It means that you don't have to show proof that you have additional needs each time you book tickets as you just give them your registration number and if you take it with you to a venue then you can avoid queues by showing it. You can find out more on accesscard.online - it costs £15 & lasts for 3 years. I wasn't going to get one but now that I have cancer again I may well do as it makes going to gigs easier.
If you get PIP/DLA you can also get a CEA card which allows you to take a carer with you for free when you go to the cinema. You just put your reg. number in on the booking page and it automatically gives you a second seat at no extra cost. It lasts a year and costs £6.

@LemonDrizzle10 I will try yoga and mindfulness I think, as things have got a bit ridiculous. Anything else to minimise these awful panic attacks. How do you find counselling? I was thinking of trying to access some counselling through the Maggies or local hospice maybe. Best of luck for Wednesday 🤞

@HellonHeels good luck today, hope all goes well for you. Keep us posted.

@Whatevershallidowithmylife thanks for taking the time to talk panic attack remedies; honesty, last Thursday, I was ready to call 999, just horrible.
I was going to start sertraline but bottled it, as didn't want any more medication in my body. I've got propranolol instead, so will see how that goes. I love the bathroom technique you shared because ironically, it is the bath I'm struggling with! I used to love a nice warm bath, but at the moment, they scare the pants off me. Something about if I lay back, the lung fluid will suffocate me.
Last night, managed to get in, with the curtain open and sit for a fe minutes. How's your bleeding now? Glad your time with your sister was lovely.

@KentishMama how's the trip going?
Yes, feet firmly on the ground, that's a good technique.

@EachandEveryone how's the joint pain? Do you take or use anything for it? Google Pernaton, it's a massage gel for joints, very fast acting and cooling to the skin.

@AGreatUsername long may stability last. You have to seize these moments of positivity whenever you can 😊

@catmomof3 how are you doing? Where are you up to with scans etc? Hang on in there, treatment will start soon and tog will hopefully feel better about things.

@Nomorebea best of luck with the appointment with plastics. I had a mastectomy 14 years ago; reconstructive surgery came later on. It is overwhelming I agree, but completely doable.

@MothralovesGojira I had to chuckle at the pic axe in head comment! If my DP breathes, he gets the death stare!
Did you have a heightened sense of smell? I have this and it's weird. It's going to use your techniques I think because I can't stay frozen to my bed for an hour! I also like the small furry animal suggestion, particularly useful for the dreaded scans etc. The odd thing is, that the bed freezing attack, came out of nowhere. One minute I was getting dressed, the next, I couldn't breathe and sweat was pouring from me. Thanks for sharing ideas, they will come in very useful I think.

@Tilllly Really hoping you are okay and comfortable. 🙏🌺

@catmomof3 just realised your scan is today. Best of luck 🤞 x

Currently on a post surgery high, eating biscuits and drinking coffee!

Thanks for all the good wishes!

@HellonHeels sounds just the ticket! Take it easy.

@lucysmam how are you? How's work going now?

Sending a wave to everyone.and especially to @Tillly

@Enigma52 Macmillan offer 4 sessions of free remote counselling, and I believe that Maggies can also arrange sessions with a psychologist. You can apply for the Macmillan sessions via their website. I hope you are feeling a bit better soon.

@HellonHeels good to hear the surgery is done, enjoy the coffee and biscuits!

@demivolte thanks, I may have a look at that, although I'm not sure what I would say, except I never feel well! That said, I've been off ribociclib for over a week ( on a break) and I do detect glimmers of feeling slightly better. Can't say off ribo though, unfortunately.

Had my pet ct scan which went fine today and my nurse called me today and when I explained the kidney function test situation she said she has never had anyone wait 3 weeks after the pet to have one so is going to sort that out for me, she said I'd wait a week maximum for the test.

Hope everyone else is doing ok today 💜

@catmomof3 good news re: your scan... 1 week sounds better than 3! 😊

@Enigma52
Yes, OMG....the smell thing. I became a bloodhound on acid tracking down 'smells' that only I could smell. It's never completely gone away either weirdly.
The worst bit for me was the phantom burning smell that smelt like a bonfire in my nostrils. It was so distressing as it would last for hours and I would end up curled in a ball crying.
My menopause started in my early 40's after I was given a 4 month course of Tamoxifen for breast pain due to having 'cysty' breasts. No one told me that Tamoxifen would trigger early menopause and then I was ignored by my GP for a good 5 or so years until a locum GP mentioned HRT. By that time I was a basket case of anxiety, aggression and brain fog so severe I gave up studying. You name the meno symptom and I had it - except for any good ones like super energy or a sex drive. My vaginal atrophy was very severe and became untreatable so DP & I have been celibate for 10 years now but we're ok with that. I found a HRT that suited me and stayed on for about 3 yrs until supplies dried up and I've had nothing since as I'm now on the other side and much better. The lasting effect, apart from not having a working lady garden, was that I retained the very keen sense of smell which is a hindrance when people eat garlic or don't wash but excellent for tracking down the slight whiff of damp caused by a slow leak behind the bath. I still get the phantom burning smell occasionally so I pray that the house doesn't catch fire as I will probably ignore the smell of smoke!

@MothralovesGojira I'm feeling SO reassured reading this, it's insane, but it all resonates! The smell thing is bonkers; I can literally smell unwashed socks a mile away. Don't get me started on perfume and aftershave. DS (16) has an assortment of body sprays and each one makes me heave! Yep, I have VA ( or fire crotch!). Can't do much in that dept as bits are shrivelled and have pretty much left the building! I've tried local oestrogen but I need the forbidden systemic HRT.

Crikey, I fear I've also become a basket case of rage, mood swings and anxiety ( hence the crippling panic attack I guess!) How to manage it, I have no idea. Maybe I should have persevered with the sertraline; but was loathed to feed my body more drugs.

Im glad you are on the other side at least and I will certainly hope and pray your house doesn't catch fire!!

@Enigma52
I'm glad that you're reassured.
I have found that talking about the menopause is a bit like how we don't talk about the realities of giving birth or how shit cancer treatment really is. It's not until you go looking for answers that you get the answers you seek for questions that you didn't know to ask. I think that what amazes me is that we are more up front about the symptoms of menopause these days but that our grandmothers suffered in silence, as they did with most things I suppose, and that attitude still prevails.
I found the level of aggression that I felt was really shocking as prior to it I was the type who did zen meditation and smoothed things with calm assurance (apart from when it came to twats on the PTA) but I actually got to the point where I wanted to smack people in the supermarket before I went to the GP yet again to beg for help. I felt murderous.
Perhaps Enigma it is time to consider sertraline or similar again seeing as the HRT route is closed to you. It will give you a rough ride for a few weeks but if you don't feel better after a month then try something else but what to you stand to gain if it does work?

Talking of murderous....I'm back to imagining DP with an axe in his head. I spent 2 hours making a lovely shepherds pie plus lots of lovely veg which he's eaten and then run off to the pub with a mate leaving me with all the washing up/dishwasher loading!

Can I ask how long it took to get a diagnosis letter? I still haven't met my consultant and I really need this letter for British Airways to hold my booking and I'm meant to travel in July so really want to sort it asap. It's stressing me out and I really don't want to claim on travel insurance as that seems rather complicated.

@catmomof3
Your cancer nurse should be able to provide something but your GP should already have been notified of your diagnosis via letter so should be able to give you a copy if you ask. My hospital never sends a diagnosis letter direct to the patient but does send one to the GP and that where I got mine from.
You should get a letter from your GP surgery anyway telling you what you can expect from them. The gist of mine was 'sorry you've got cancer, here are some websites that can help you, don't call us'.
Don't forget that you need to get your prescription exemption form from your surgery and they should automatically sign off on it because they already know that you have cancer. You are entitled to a 5 year exemption from prescription charges because you have cancer - it's a simple form that you return to the surgery and then you get the exemption card through the post within a few weeks.

@MothralovesGojira I will do a econsult tomorrow and ask if they can sort me out a copy. My nurse was under the impression the consultant would give me one but I haven't seen them yet. I already get free prescriptions because I'm on ESA so I don't need to worry about that. I just want to sort these flights out asap because it's just adding to my stress.

@catmomof3
Honestly apply for it because you don't know what's around the corner and it's another of those things that gives you peace of mind. If you lose ESA even if it's temporary, you lose your free prescriptions. You get an exemption for 5 years regardless of your circumstances with a NHS prescription card.

@MothralovesGojira I will enquire about that today as well 👍🏻

How is everyone?

It's 4:46 in the morning where I am, and jetlag is kicking my butt. But I'm kind of glad because it's my last day anyway, and if I'm still jetlagged today, readjusting to UK time is easier. I know that sounds odd, but trust me.

I've had to answer so many questions about my health situation this week. From so many people. Who then all act very surprised that I'm able to make bad jokes about it, and that I'm in one piece and living my life. I guess that's a compliment of sorts, but what do they want? Do they expect me to share my deep, dark fears? I somehow don't think random colleagues are ready to hear that I've no idea what my prognosis even looks like after two unrelated primary cancer; and that I'm petrified that there'll be a third; and that my life goals have basically been reduced to hoping I can see DS9 into adulthood, which some days feels very unlikely.

Rant over. One more day of pointless meetings, and then I get to fly home and hug my family tight.

@KentishMama It's tough where colleagues are concerned and you are right, what do we actually say to them? My response so far, has been three words " it's bloody hard!"
Get your meetings out the way and then back to family; that's important.

I've come to the conclusion that you can probably only share deepest darkest fears, with those who can handle the truth, or a counsellor/ psychologist. My oldest friend of 40+ years absolutely does not want to know about my latest diagnosis, as it " makes her cry!" Support is shite quite frankly, absolute shite.

Safe journey home @KentishMama and then I hope you get to rest a bit?