Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

@PatsFishTank great news on getting a room. Hope you can get comfortable now in your (kind of) own space

@cannaecookrisotto thank you I am still here.
Tuesday - that was yesterday wasnt it? So - ct scan not so good, bone scan clear.

Good news is no mastectomy because now that I asked to look at my scan they showed little blobs in my lung/s not sure whether one or both and a blob on my liver so now the plan is to move to chemo and targeted treatment as its HER2 posiitive.
Not sure why you cant just see your scan, its your body and your information.

Anyway now i have to go for Ecg which i am not sure i can do as it says lay on left hand side and i cant do that as my lumps are there and it hurts - anyone had one?
and oncologist appt next tuesday

Oscar - lovely spaniel dog is fine at the moment and i have research a new drug for his epilepsy, we have kept fits at bay for over three years and I am sure they have started again because of all the stress in our house.

Toilets fixed, its bliss!! Dont take your toilet for granted.

Also I am feeling so relieved that I dont have to have surgery, which was weighing heavily on me, i know that chemo was going to come anyway and now it just has to work harder and kill more cancer

Its been just over four weeks since I found out, it feels like years already, I cant concentrate and I cant see any sparkly unicorns at all.

Husband being very kind, sons giving me more cuddles than usual and love you mum but its a lonely place to be. Friends have been good too but my head is all over the place I am very tired and sleep a bit and then wake up in terror.

sorry i am moaning on now, i hope everyone is coping as well as its possible to in these circumstances and every day i am grateful for you all here posting and helping each other through this.

@cantbelieveIamhere
I’m really sorry to hear your CT was not so good and shown some blobs. Have they confirmed the blobs are cancerous or are they going to conduct further testing? Good that they have given you a plan to start treatment, when does your chemo start? Have they told you your regime? If they have, let us know and we can give you some chemo tips, I’m sure between us we’ve sampled the majority of chemo flavours.

ECG - they’ll help you with positioning so take their lead on that ❤️.

Good news on Oscar and a new drug to keep his seizures at bay!

Your mental health will be taking an absolute hammering - it might be worth getting in touch with your GP for something to help. The day after my diagnosis I was on the phone to them. I got some Diazepam 2mg. They were fine offering me stronger but I can’t really as have a 6 month old and she’d be getting pissed off with me in the night if I didn’t wake up quickly enough. She’d be throwing her teddy at me in protest. I was struggling last week so asked the GP to up my SSRI (Citalopram) slightly too by 10mg (so on 30mg now) and I’ve found the anxiety to have eased off the accelerator slightly.

Lovely your husband and son are being super attentive to you, it does help but I hear you on it being lonely still. It’s just fucking shit isn’t it.

No apologising ever on here for moaning. It’s the moaning thread, it’s what it’s for ❤️.

We’re here for you xx

@PatsFishTank
Film making! That must be so interesting. Just think, one day he could be like the next Steven Spielberg and be super rich and take you on posh holidays! My 8 year old wants to work in a pencil factory sharpening pencils so no such luck for me. I’ll have to indoctrinate my 6 month old earlier.

Christies are absolutely amazing. I actually look forward to my treatment days, you’ll be in brilliant hands if you go.

Great to hear about the convo with consultant and that your AML can be tracked more easily than others. It’s reassuring that your response to chemo can be more closely monitored, this was a huge worry for me when I first started. My tumour was 9cm, and the oncologist told me that the first two weeks of treatment were “crucial as the cancer is dangerously close to the skin and invasion” 🤮. So they had a very small window of opportunity to
operate if no response and I was petrified I wouldn’t catch it. Fortunately I responded very quickly which was hugely comforting. It makes going to Chemo
much more tolerable when you know it’s doing its job.

Big win on your own room! Good idea to get some home comforts in as you say, may as well make it your space whilst you’re there. How long have they said you’re going to be in?

@Ventress
Yeah she’s nice. I probed a bit about how woo she is and turns out she’s a woo person like us so next time I might prattle on about that for an hour 😂.

I get steroids as part of the pre-meds prior to chemu then they give me 4 daily for the next 2 days after treatment. (2 with breakfast and 2 with lunch). I finish all doses on the Friday lunch and by Christ do I miss them on Sat and Sunday. Fatigue kicks in. But my appetite carries on. They weighed me again today and I’ve gone up to 62kg. So that’s 1kg a week for the past 2 weeks… 😱.

Sorry to hear the scans were absolute shite. Is it like a tube? I’ve never had one. It must have been crap having a coughing fit in there whilst trying not to move!

Having my arms pinned to my sides sounds like my worst nightmare, do you get claustrophobic? I wouldn’t worry about being a problem customer, I’m a problem customer too but we have to advocate for ourselves and if that means they have a slightly harder day at work then it’s tough shit. It’s our bodies and our wellbeing at the end of the day ❤️.

Glass of wine - not sure if I mentioned but I had a tiny glass of lager shandy. I know I shouldn’t have, but DH had one and it looked so refreshing, my Ghandis Ass mouth was dribbling looking at it. So I drank one. Holy shit. About 15 minutes later I developed a rash on my face that looked like sunburn!!! I was flapping. I gave it 20 mins whilst frantically drinking water and it did settle. Never again. Hope the pre-Chemu bloods went well and you’re now all comfy on the couch relaxing xxx

@FcukBreastCancer
How was the cinema? Any good? Was the film worth a watch?
I need to re-hire a cleaner because a) I’m lazy bastard on a good day pre-cancer and b) I just can’t be arsed with it. A good cleaner is worth their weight in gold. My last cleaner was bloody brilliant at cleaning but very inconsistent in her turning up. So had to say a reluctant goodbye. I felt awful because I know she had young kids and needed the extra money but one clean every 4 weeks wasn’t doing anything worthwhile. So I need to hunt down a new one.

@ForestFlowerFairy
How was radio? How are you feeling lovely lady?

@DanFmDorking
lovely to hear from you sir! Do you go to a local pub for Sunday roast? Do you just have chicken or do you mix it up with some beef and gammon? I usually have a mix of all except turkey. I just really don’t like turkey, I find it tasteless and boring. DH made spag Bol with turkey mince once with the justification that it’s “healthier” bless him, but I had to pretend it was really nice then just suggest he stick to beef in future so I can actually taste his cooking on the blue moon he decides to cook for us.

In my news, Chemu today. All went as it should, I feel fine now, if not a bit wired off the Dex.

BCN called with my second lymph node biopsies - all come back clear!!
its all been a bit of a confusing faff with the nodes. The original surgeon told me they were clear on physical exam with his hands but the US was “suspicious” so radiologist took 2 biopsies.

whilst waiting for the first results, I met my oncologist for the first time and she examined me by hand. She said she could feel them enlarged and coupled with the US images, we “can expect the biopsies to come back lymph positive”.

But the biopsies came back negative. They discussed it at MDT and decided a second biopsy was needed due to the way the presented on scan. They said they suspect it’s a false negative.

So had second lot of lymph biopsies a week later. This radiologist (a different private one) took 4 biopsies from the same suspicious node and placed a titanium marker in at the same time.

They’ve all come back negative!

My oncologist rang the radiologist asking if they were confident in their “sampling”. Radiologist basically told my oncologist that they are absolutely confident in their sampling and it was bang on, and she took 4 from the same node. The results are negative so we have to believe the science 🤷🏼‍♀️.

I’m a bit wary and will speak to the surgeon about risks in terms of full node clearance vs SNB.

My oncologist really didn’t want to believe those results. I also gave radiologist a call after speaking to BCN and she said that yes it was enlarged on US but theres multiple reasons for enlarged lymph’s and she was super conscious of where she was taking samples from due to the suspicion of false negatives from inital
biospy, and that the odds of 4 biopsies coming back as false negatives wasn’t really gonna happen.

I keep eating so I’ll be rolling into Chemu in a few weeks at this rate.

Thinking about applying for PIP as want to try and reduce my hours a bit. I work for myself and I’m the breadwinner so feel under a lot of pressure to keep the ship afloat, so I’ll see if I can get any support whilst I’m on treatment to ease things.

Also - sending peace, rest and as much feeling well as possible to all in these wanky times xx

Hello all
Apologies for the silence - it's been a rough old week!
So bad news first then the positives. I don't think morphine is for me, seemed great the first few days, I could sleep, I managed to eat toast...and then I stopped being able to eat again, constantly felt lethargic and just couldn't shake the headaches, sinus pressure and painful throat. I tried upping the morphine but at 5mg every 4 hours and paracetamol 2 hours later I was getting worse
Spoke to the nurse yesterday who proposed I go back to cocodomal during the day, have morphine only to get me to sleep/through the night as she suspects the morphine is causing all the tiredness and lethargy without actually stopping the pain.
So I did that last night and slept from 10pm-4am, and as it was a chemo day and pumped full of steroids that's a good result. I'll stick to just the cocodomal and see if that helps today and we check in tomorrow to see how it's going before the weekend

So good news?? I have had my last chemo session and I am down to just 4 more radiotherapy sessions.
From what the nurses and oncologist have said I can expect the radiotherapy side effects to worsen over a few weeks and then they start to improve...so that means less than a month now

God I want to feel me again, and eat - I do feel a little odd at the hospital when I'm taking medicine and meal replacements through my feeding tube, I figured if I can't do it there then where can I?! I felt a little self conscious when a man started talking to me mid feed only to find out he had a rig tube and was struggling with it, although I did not appreciate his horror stories of the balloon bursting!

I am so pleased to read all your updates and see how you're all doing, I feel totally cut off at the moment (that's me I'm choosing to withdraw slightly) and it's so nice to hear @cantbelieveIamhere about a possible new drug for Oscar's epilepsy and what amazing news about surgery. I started with surgery so I do understand the apprehension, I've had a few surgeries though so for me and operation didn't feel like a big thing, if I'm honest that was the easiest part for me, not so much the recovery but I have a weird fascination with the ability to talk to the anaesthetist and wonder which sentence I'll pass out at!
@PatsFishTank son is doing at uni, we met the most excited film student at the cinema for 28 years later in the summer who spent a good 20 minutes telling us how it was filmed, and why it was ground breaking... It was a terrible terrible film, and at the end he looked so defeated and miffed that they'd ruined the franchise - I absolutely loved his passion, I do hope your son is as enthusiastic, it may be a tough industry but passion makes all the difference.
My daughter is second year law and my son is first year Finance, nothing fun or creative in our house. We try, but we fail!
I bought paints at the start of my diagnosis thinking I could get good at something creative and everyone laughed and said it was shit (that's encouragement in our house!) but I think I'll stick to my gardening as my one and only creative outlet, that and seeing/admiring artists and their creativity.
I think the saying should be "those that can do, those that can't buy"

@cannaecookrisotto I am delighted to hear your lymph nodes are clear, 2 tests must have been horrible but at least there's a level of certainty for you?
I would strongly recommend you seek some financial support as the breadwinner, these things all take time and it's far better to start sooner than later.
I'm still waiting on one insurance to confirm payment, but at least with one paid it isn't the end of the world, bills are paid.
Have you checked to see if you're covered under critical illness insurance if yiu have a mortgage?
We all pay enough bloody taxes and it's supposed to help for times like these, so take whatever you can and apply for everything.
I adore work, and I've loved keeping in touch with those I work with the last few weeks but there's no way I have the brain capacity to do anything other than celebrate their successes. One colleague did fill me in on some problems (now resolved) and I'm pleased she waited until after it was fixed as j doubt I'd have been any help, but unable to resist trying to help!

@cannaecookrisotto - Thank you - I pop along to my local pup - they have a choice of roast lamb, chicken, beef and gammon (not too keen on the gammon) - they show the football as well so if Arsenal win it's a double whammy!

I know what you mean about 'tasteless food' - I'm rather lucky with my Chemo drugs this time round because they changed my second drug and my current side effects aren't as bad as they have been with regard to taste.

I'm pleased your biopsies came back negative - well done 😜

@ForestFlowerFairy - Yes, chemo really messes with ones sleep schedule - I'm fed up with it - I'm pleased you've had your last session though - good luck with the radio stuff.

@cannaecookrisotto I Swear was a good watch, but hard hitting and I did shed some tears.
You should definitely apply for PIP or anything else on offer. Can you ask citizens advice? I think there could be other benefits based on NI contributions.
And a cleaner if you can afford it.
I assume you will have surgery at some pont? I'm pretty sure they will take out some nodes then. My surgeon consented me to remove them all in case the looked suspicious. However, she only needed to take the required sample.

I'm glad the cinema was good @FcukBreastCancer. I love the Everyman cinemas - so very civilised!

We really need a cleaner too. Ours quit just before first lockdown in 2020 and we've managed without since but now, with me largely of no use, I think it's the time to find a new one.

Good news about Oscar @cantbelieveIamhere! Do you know when the first chemo will be? I went straight to chemo too. I've had a few ECG's recently and I didn't have to lie on my side at all. They only take a minute or so. It takes longer to stick all the little stickies on and connect the leads than to do the ECG itself. Don't worry, they will work around what is comfortable for you.

Frankly the sparkly unicorns can do one. Have you been given any drugs to help with the stress and anxiety you are dealing with? If not, you should contact your GP and ask. Or ask at your oncology appointment if you can wait that long.

I went for my COVID jab this morning and cried at my lovely GP. He sent me away with a vast amount of morphine (and a straw (not really)).

Wonderful news about the lymph node biopsies @cannaecookrisotto . I'm thrilled for you, that's so positive! Definitely apply for PIP. It must be stress you don't need to be the "bread winner" at the moment. I'm sure you know that there's a section on the Macmillan website on financial support and they have a chat service. Definitely get a cleaner if you can and eat what the hell you like.

I've been trying to get company HR to clarify my sickness pay, and what insurance I have, for weeks. I think I know but I just want them to put it in writing. Very frustrating. If it gets to the point where I've used up my sick pay I will be applying for PIP too.

Nasty reaction to the alcohol there! I've put on weight over the summer too as I've been so sedentary but screw it. Everything tastes appalling so I'm going to eat what tastes best and if that's cake (or McD's), so be it
I've just done an online food order to the place we're staying in Cornwall and it mainly comprises of junk food - all the major food groups are represented - pizza, chocolate, sweets, crisps, plus wine for DH and DSIL

I'm glad that you have finished the chemo @ForestFlowerFairy Six precious hours of uninterrupted sleep - well done co-codamol! The end in sight for the radio too - I hope the side effects don't worsen too much.

DH and I are shaving each other's heads this evening. So much of my hair has fallen out now so I think it's time to get rid. DH has very short hair anyway so less different for him, but kind of him to join in. I admit that I thought the hair loss would be more patchy but it's actually just been an overall thinning. I now look like I've got a comb-over - not a great look!

Wishing you all a pain and stress free Thursday

@cannaecookrisottoi saw a Macmillan booklet on self employment and cancer which I picked up today
It has 5 sections:
How cancer may affect your work
Decision making
Keeping your business going
Financial support
Further important

I'm more than happy to take a million photos and send either the whole booklet or if there's a specific section I can just send that?

@ForestFlowerFairy
So lovely to see you!
It does sound like a rough old week indeed, but great that they’ve advised on cocodamol and morphine combo that’s resulted in a nice sleep! Everything feels less shit after a good sleep.

🥳 for last Chemu session!!! Less than a month and you should be coming over the brow of the hill. When will you be free of the feeding tube? After radio? Imagine how wonderful it will be, I’m so chuffed for you. The man’s horror stories were a bit misplaced but some men just waffle (sorry Dan) 😜.

Tbh the lymph biopsies were a walk in the park compared to the initial breast biopsy- that really did unleash hell. My lump doubled in size, leaking fluid from the incision holes and my skin looked like orange peel. Pain was awful. I actually thought I have IBC at that point so was panicking. But nope, just bog standard TNBC.

Yeah I’m going to look into PIP. I feel a bit bad because I’m still able to work, I do 2 days a week but I’d like to not feel like it’s mandatory if that makes sense. Some days I’m powering on whilst so bloody tired because otherwise my kids will be eating beans for days. DH works full time but his wages are like pocket money compared to what I get when I’m full time. So two days a week are covering the bills thankfully but I’m finding myself dipping into my savings pot for the extras.

It’s a good call that Forest, I’ll check my policies. I love work too. I started my own business last year and it really took off. I quit a full time very high level corporate job and though fuck it. No quality of life, working all hours to keep up then the bastards asked me which half of my team I was making redundant!!! They gave me 24 hours to nominate. So 24 hours later they got my resignation instead. Then!! They realised how bollocksed they were without me and hired me back as a consultant - paying me more for 4 hours a week than I earned full time as PAYE… I didn’t actually want to go back so gave them a “fuck off” price. But they accepted, so whilst I was perplexed, I agreed. And my staff kept their jobs. I asked why on earth they could afford to pay inflated consultancy prices whilst making people redundant. Their answer? Because it comes out of a different pocket. That was 2 weeks before Christmas 2023. And I wasn’t about to have that conversation with the staff that kept the dept afloat, and without them I couldn’t have done the job anyway. But was the best thing I ever did. Never been short of work (I do a lot of public speaking on my area of expertise so without sounding like I’m blowing my own trumpet, I’m quite well known in our small niche world. Whereas now I’m pushing work away and I hate it.

@DanFmDorking
oh gosh Lamb!!! My local doesn’t do lamb but this would be a huge YES from me. Those tasty little lambs with mint sauce. I’ll be raiding the cupboards again in a minute but no lamb unfortunately.

@FcukBreastCancer
I’ll wait for the movie to come out on my dodgy Firestick haha! Best £70 a year ever.

I am on the hunt for a new cleaner. I need one. My kids can smell my weakness dad toys are just migrating downstairs like pigeons. I’m currently sat looking at a piano keyboard type thing that I can’t be arsed taking upstairs. It’s been there now for 2 weeks.

Yep, surgery will come post-chemo for me, so I’m guessing they’ll do a sentinel node biopsy thingy. I’ve said to remove all of mine. I’d rather they take them all and suffer the consequences of that than leave one of the sneaky fuckers in and have reoccurrence.

@Ventress
You could apply for PIP now, you can still work and have PIP, and it’s not means tested either. MacMillan can help with all the forms too! I think you should apply because why the hell not? Like you say, we pay our taxes and if we can’t utilise disability benefits when we’re now classed as disabled with cancer when can we? Even if you used it for buying yourself some treats or things to make you feel good, I say go for it.

I hate McDonald’s but love it at the same time?? Every time I eat it I think “god that was shit” but I sit there craving it. My daughter told her teacher once that all she eats is chicken nuggets 😂. I was like “that’s ok, that’s why you’re on school dinner, for a varied diet”. She does have other healthy food too but I just wanted to see the teacher do lemon purse lips.

Your food order looks like my daily one when I start getting peckish. I love sweets the best, anything tangy. I’m also obsessed with Marmite at the minute. Marmite on toast - but even better - Marmite on croissants!! I challenge you all to taste it. Like a mouth party of sweet and salty.

Shaving your head is supposed to be good for healthy hair regrowth, this is what I’m going to do too if I start losing it. Your hair will be back all shiny and soft, like a phoenix rising from the razor!

There’s some nice head soaps I’ve been looking at, I’ll post some links.

@cantbelieveIamhere
How are you doing lady? Xxx

My update - done some work this morning then festered on couch. Ate x2 Greggs bacon baps followed by x2 glazed doughnuts and a pumpkin spice caramel latte. I’m properly out of control.

Has anyone tasted that “Oat Pantry” porridge range? It’s honestly one of the nicest foods I’ve ever ate. I woke up at 1:30am last night and couldn’t sleep so went downstairs for a bowl of porridge (god help me see what I mean!!).

All the kids are now in bed so I’m going to watch The Accused on Netflix. And probably stuff my gob.

@cannaecookrisotto - ...but some men just waffle (sorry Dan) - you're right!

...my local doesn’t do lamb but this would be a huge YES from me. - yep, it'll be lamb on Sunday - Arsenal have a 2pm kick off so I'll have to be there a bit earlier

...I woke up at 1:30am last night and... - no problem there - if your body is hungry then feed it - it needn't be a lot - I've had many a midnight snack of cornflakes or porridge or Ambrosia creamed rice - yum yum

OMG all this talk of food!!
I've been making a mental list of all the food I can't wait to have again and I fully intend to gain the 7kg I've lost within the first week of eating.
Thanks to @DanFmDorking I'm adding a roast dinner, both my mother's roast chicken and now I have the urge for a carvery tour of all the pubs to find the best. Love a bit of lamb

I'm also adding in a full English, doughnuts on the seafront, Thai (tom yum soup and ALL the starters) we have an amazing tapas Asian style restaurant so you'll be wheeling me out of there as well.

@cannaecookrisotto when do I not need the tube is nore linked to when can I eat again?! I dont know 😭 I managed to choke on a cup of tea today but I'm at that awkward phase where if I don't swallow the muscle weakens and it'll take longer so I have to try every day, but it hurts so much the tube is just easier, but of course doesn't help me longer term. They did mention speech therapy and physio at the start of all of this. I thought I could talk but realised that it's more my sil, mum and husband can understand me. To everyone else they strain to listen and mum took over at the pharmacy today which made me feel a bit crap even though she's trying to help. Talking is easier to practice than eating so I'm determined to keep doing that regardless of how frustrating it may be for others.

@ForestFlowerFairy - ...To everyone else they strain to listen... - Hmmmmm - your speech therapist has given you some phrases to practice (work with me here) - examples - Far Canal, Norfolk Enchants, Suffolk ‘n’ Bad, Big Fact Hunt, Mass Debaters, Shy Teds, Whale Oil Beef Hooked, Sofa king good, The Pork Hunts.
Childish but fun - well, childish anyway.
So long as you don’t get your mucking words fuddled up you’ll be fine.
Enjoy your Friday 😜

If I applied for PIP right now I’d spend it on a cleaner and cake! Everything tastes awful but I’m still really hungry. I am happy to accompany you on your food tour @ForestFlowerFairy, sounds luscious!

I bottled out of the hair shave last night but did it this morning. Not a full shave, more of an Eleven from Stranger Things. It a bit patchy (and I wouldn’t pay DH for his hairdressing skills) but it’s not too bad. I might be braver next time.

Just about to have my cannula done for chemo.

I hope everyone is doing okay today, all best wishes.

Ps roast lamb is my favourite too ❤️

@Ventress thank you for your ecg messages, I have rebooked appt for next thursday as they were sending me to the dodgy mobile cabin place and I couldnt face it. Also it was on a Saturday. I have decided I need to have some time at the weekends when no nasty phone calls or appts have to be dealt with for my peace of mind.

Hope you have a lovely break in cornwall, its a beautiful part of the world and get to relax and switch off from this.

@cannaecookrisotto I am amazed at your posts as you are keeping up with everyone and I dont seem to be able to manage that.
Oncologist appt on tuesday and I guess then i will be told what my plan for chemo might be and also targeted treatment because of all positive results including HER2. Yes the blobs and splodge are cancer, thats why no surgery as its now down to chemo to kill it all.

Have made a conscious effort not to think about IT today, and have read lots and had a lovely walk arouind a reservoir really early with Oscar, sun coming up it was beautiful. Baked a cake, made tomato sauce.
Bliss until your stomach goes lurching and you think oh yes I have cancer.

I too hope everyone is getting some peace each day and best wishes to you all.

@DanFmDorking
omg Ambrosia creamed rice! How did I not remember this for my midnight snack arsenal?? It’s going on my next food order that fella.

@ForestFlowerFairy
I’m so so sorry. It’s just dawned on me that I’ve done nothing but prattle on about me stuffing my face whilst you’ve got a blinking feeding tube!!! 🤣🤣. On the plus side, at least you’ve got a cracking list of foods ready to go from the waffling. The full English is a must.

I get you, so you need to swallow to strengthen the muscle and get off the tube. Might be worth re-mentioning the physio so they’ve got it lined up for when you’re ready and not messing you around for an appointment at the other end. My Nan had speech therapy after her stroke (we literally couldn’t understand her at all but the therapy really worked and her talking is completely back to normal now). Nan was tube fed for months but you couldn’t tell now. Chomping away on cake as normal. I visited her tonight and left her with a large glass of Sherry.

Defo on the keep talking and feck to how frustrating it is for others. They have to be patient, there’s nothing worse than someone jumping in when we’re perfectly capable of doing it ourselves is there. Makes us feel a bit decrepit. My mum tried spoon feeding me a yoghurt at Chemu one week… I was like move mother before I shove that spoon up your rectal passage.

@Ventress
Apply and spend it on a cleaner and cake 😂. Honestly, it takes a while to go through the process anyway so better to have it and not need it than be needing it and waiting months for it to go through. You’ve worked, you’ve paid taxes, you’re fully entitled to it! Even though you’re still working, it’s not means tested for that reason. I say go for it and get a cleaner, makes things easier for you and that’s time you could be resting and helping your body do what it needs to do - fuck those wanker cancer cells up.

I’m betting your hair looks really cool. I’ve always said if I have to shave mine (which I will if it starts coming out, I’d rather have a shaved head than wispy bits wafting about) then I’ll fully style it out. Go shaven, get some big earrings and look like a bald chick.

@cantbelieveIamhere
I do it by a mixture of reading all the messages and then scrolling up on my phone as I’m tagging. But there’s no pressure to reply to everything, even if you want to come and have a rant, that’s ok ❤️.

The oncologist appointment is always a nerve racking experience, I was shitting myself for mine but it was ok, I felt better walking out than I did walking in and I’m sure you will too. Having that set plan makes us feel a bit more in control of a shituation (yes shituation - new word I’ve just made up) that we’ve had zero control over so far.

I’m truly sorry to hear they’ve confirmed the other blobs as cancer. What I will say is, this chemo is magnificent stuff and really powerful. It’s practically melted my tumour nearly in just six weeks and whist the thought of chemo is very daunting, it’s also quite empowering going in each week and knowing that it’s doing its job. I’ve been very lucky on side effects, cold capping has helped me keep all of my hair so far and I enjoy talking to the other patients and chatting with the nurses. It’s a bit of a day out at this point for me. I’m on Paclitaxol and Carboplatin weekly for 12 weeks then Epirubicin and Cyclophosphomide every 3 weeks for 12 weeks.

One thing to give you a heads up about - after my oncologist appointment I received a letter in the post, basically outlining everything about my cancer, staging, treatment etc. I opened it and was alone (I’m grateful my children weren’t here) and it absolutely floored me. I nearly crawled under my bed and refuse to come out. For me, seeing it written in black and white like that was the worst point up to then, and it was like I was reading about someone else. My brain was really struggling to compute “this is me”. It was massively triggering (I hate the word triggering and it’s overuse but it’s the only way I can describe it). I contacted my BCN and explained that I am fine for them to keep hold of my letters until I request them, unless it’s an appointment or a very urgent need to know type letter. I’m mentioning all this to you as forewarned is forearmed. You can have somebody there if you need whilst you open the letters, or be alone if you think you might need a moment.

The best practical advice I can give you going into chemo is to drink plenty of water every day. I also drink an electrolyte drink and I’m convinced that staying so hydrated is helping flush the toxins through me and keeping toxicity down, thus resulting in feeling normal-ish.

You can also get a referral to psychology if you need it, and don’t forget your GP is there to support you as well. I got straight onto mine for some anti-anxiety meds and to increase my Citalopram. You need to look after your mental and emotional wellbeing as much as your physical side too. I’m not usually one for sharing and talking but I’ve had too. If I was to keep it inside I think would have combusted.

For me, the start of “coping” better came the day I started treatment. I felt back in the driving seat and proactive.

Do keep coming here, you can rant, scream, say anything to us and sometimes just getting it out of your head and into the ether can make a big difference and bring some peace ❤️.

I can’t believe I missed this one!

I’ll find it on their website, don’t take a million photos that will drive you crackers but I’m very grateful you thought of me and would do that ❤️.

i’m going to have a mooch on their website now and find their secrets about this x

@cannaecookrisotto - ... omg Ambrosia creamed rice! ... Oh yes - and this is a big favourite of mine - Ambrosia Devon Custard - 'But I haven't got anything to put the custard ON - 'er, you just need a spoon'.

How are you feeling about the hair shave today @Ventress? I imagine it may take some getting used to - does choosing to do it have the empowering feeling people talk of, or just another level of shitery?

And yes, your absolutely welcome to my tour of food! I feel like wiping the whiteboard of all my emergency numbers and adding all the foods instead that need eating, I'm also wondering if I should add foods I don't like to see if my taste buds have changed. Olives, cheesy cauliflower, fish, German potato, vermici - maybe even at the suggestions here ambrosia creamed rice and porridge - that and custard have always been things I've avoided,🤢 maybe I'll like those things after all this? It could be a whole food re-education.

Perhaps my new speech therapist @DanFmDorking can double as a food coach?!

@cannaecookrisotto please please continue to prattle on about food.
This whole experience has taught me a few things, I'm not too bothered by alcohol, I actually really like my life and yes there's things that can be improved but I do not have any 'wake up calls' as to how I should have been doing things and OMG do I love and miss food!! My entire thing has been when I'm better were going out to eat more, I've a list of local places I've heard are good and never been to, I'm going to cook more to experiment and not eat the same things over and over and I want to be open to trying lots of new foods.
And maybe, even though I'm not bothered by alcohol a small glass of sherry and I shall cheers you're wonderful Nan, I'm glad you got to visit again so soon.
Oh, and seriously happy to take the pics of the booklet if you can't find it online. You do an awesome job keeping us all boyed up, it's the least I can do.

@cantbelieveIamhere great to hear you're taking some positive steps forward and decisions around appointments - I must admit I've just accepted everything I've been told/given without consideration but I did have an MRI in a carpark mobile on the same day we had our annual village open garden and I wish I'd rearranged it, it really ruined the day as I spent all morning worrying about it instead of enjoying the open garden. Protecting your weekend and your time to clear your mind is so important.

🎉Just 2 radiotherapy sessions to go 🎉

@cantbelieveIamhereI absolutely agree with @cannaecookrisotto. I would also say that my oncologist told me that secondary BC in lungs/liver is a totally different, and more treatable beast than primary lung cancer. I hope they get you started on your chemo soon. I was sitting getting mine yesterday imagining it like pac man chomping through the bastard cancer 😊

More Later as we are packing and DH is doing all the work!

Just hear to add a little on the hair discussion. I had long hair down to the middle of my back this time last year. My lovely hairdresser cut it short for me before chemo (and wouldn't let me pay!). Not going to lie, I cried like a baby the night before I had my hair cut off. Then DD3 and I shaved the remainder off a few weeks later when it started to fall out in earnest. And we laughed like drains as we did it because it was so ridiculous- my daughter's resilience never fails to astonish and support me.

Long way of saying that actually shaving it off was absolutely the right thing for me. I felt better ( my scalp was so prickly as the hair fell out, and all that went away with the shave) and it was one less thing to upset me. I rocked the chemo hats from Anna Bandana and hats4heads. It was winter, so a hat was a must even in the house!

I remember posting on here that my DH was being so unfeeling about my hair loss. I got lots of sympathy. What I didn't think to tell everyone later was that at Christmas (I started chemo on 19th December) he had bought me a woolly hat and a fedora, one pink and one purple, to replace my long purple hair... That man does not do words, only actions.

@ventress thanks for the encouraging information about secondary cancers, I shall cling to that piece of info. happy holidays to you, i love cornwall although I have only been twice. Amazing scenery and history.

@cannaecookrisotto thank you for the chemo info.
Do you wear cold mits and socks? to stop neuropathy?

I do think I will probably feel better once I know when its all going to start even though I may feel physically worse.

I totally agree about the letters they do floor you seeing it in writing and it weirdly is far worse than when they tell you in person. I might just file them rather than read them in future as they do my head in.

@ForestFlowerFairy wow the tube sounds really difficult I have no words for it really as I cant imagine how uncomfortable it must be.

Again I do read the posts but only taking half in, I am sending thanks to you all for the posts and info and encouragement for those of us following in your footsteps.

@ForestFlowerFairy also great only two more radiotherapy sessions!

Only 2 more radiotherapy sessions is fantastic @ForestFlowerFairy. I’m looking forward to you telling us about your culinary adventures!

As @Poledrahas said my scalp had become really tingly and very sensitive and that has really improved, even though I haven’t fully shaved it. DH bought me a beanie and a bobble hat. I’m mainly wearing a baseball cap at the moment as it’s too warm for the others. I’m rather hoping for a nice craft market down here in Cornwall where I can get some hats or scarves to swan around in.

Your story is lovely @Poledra. My hair was just about long enough to tie back so I didn’t think I’d be so emotionally tied to it but seeing so much come out each day was becoming hard. I am actually surprised at how okay I am with my new baldness (bald chick cool 😎 )

My sister did the cold cap and kept most of her hair. What she did lose has grown back as a different texture and curlier (it was dead straight before). It’s not noticeable to me though @cannaecookrisotto

No you have lost me now @DanFmDorking- roasts yes, milk puddings no. Loathe them all! Or perhaps u won’t after this, who knows?