Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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Haha! I always look as if I'm moving in too with bags dangling from my walker! I'm always looking for the perfect bags too to somehow make all my things look like less, I have to have ostomy supplies with me as well just in case so it's a lot. They never mentioned having heat bag things but I think someone may have given me one or two, will have to have a hunt round. I'll have to remember thick socks too!

@LuciaPillson I stuffed all my things in a reusable shopping bag - a Waitrose one in an attempt to look posh rather than my usual Aldi one with the big cheese picture on 😆

Yes well you wouldn't want to look cheesy! I'm sure the nurses are very impressed with the Waitrose bag! 😋

I like tote bags with zips in case it's raining out, I have one for the ostomy supplies and one without much in it, maybe spare carrier bags in case I find myself doing some shopping, but it isn't big enough to hold a lot of clothing. I tried a rucksack but it had so much in it that it wouldn't fit on the chemo chair with me and I like to have a bag close by... I can put some things in the basket of my walker but if taking a taxi or someone's driving me, it's easier if the basket is emptied since it has to be taken off the walker. I feel silly having so much stuff...... 😳💼🛒👜

I’m so frustrated with this name change, I tried to change it back to AGreatUsername but it says it is taken….by me 😭 So I am stuck with this now.

Terrible weekend, trying my best to carry on as usual but just crushed that they think I’m having a recurrence just 9 months out. Scared for the future. I know this bit is the worst but I’m terrified that we won’t find something that works. Fucking cancer.

Im now seeing that maybe I’ve been having some very minor symptoms again, not being so hungry, being hot ALL the time, trousers feeling tight even though I don’t look swollen at all. All these things are so minor I still don’t know if they’re caused by this recurrence or menopause!

My oncologist has referred me to a U.K. specialist for a second opinion, I have to pay privately because I’m in Wales whereas if I was in England it would be free, so that is a little annoying. MDT not until Wednesday so I have a few more days of limbo left, assuming they manage to look at me this week.

@StressIsMyFuel I’m not surprised you are rattled. This is scary stuff.
Can you log out of Mumsnet and log back in under the other name? @AGreatUsername is still there waiting for you.

I am bored. Back on pills with no energy missing out on fun stuff due to extreme lethargy. I’m getting fatter and less fit every day. Have had stern words with DH about not bringing me cake so instead he is bringing Scotch eggs and cheese pastries. Yummy but not healthy either. He is like a mother bird bringing treats back for his chick 😂
I have started the Zoe project which is quite diverting but I really don’t like bagels even though I chose them as a standard carb test. I was brave and did all the finger pricking as after all the injecting we have done with filgrastim it should be easy. Looking forward to finding my results. They say chemo should not affect them.

@StressIsMyFuel I'm so sorry you're having such a hard time at the moment and hoping that Wednesday comes round quickly for you so you know what the plan is, the waiting is torture. I'm also hoping you can have your second opinion very soon too, how annoying you have to pay for it. Cancer is truly the gift that keeps on giving. Regarding trying to revert to @AGreatUsername I had the same issue and in the end I changed to my previous username but with a lower case letter for one of the capitals. Not ideal but I felt 'reset'.

@Top a belated happy birthday from me, hope you had the best day! I am rather too keen on cakes and treats although I'm the one to blame for my overconsumption. Your DH sounds lovely though.

Sorry things are so scary atm Great Re usernames I did a slight change and threads I was already on kept old name, new threads new name. If you want could just add a number after the name or change to something like AReallyGreatUsername though we know its you. Re symptoms I have no idea, menopause, meds etc can cause so many symptoms.

I was also really cold during chemo, very strange though my hospital was tropical in temperature. They seem only to have heating off mode or 30C heating mode.

I have remedied it! Don’t ask me how, as I don’t know 😂

I am another cake lover. I would live on it if I could. I make cake all the time and just eat it.

@Brunonononooo did you manage to get out in the sunshine for a bit today?

@AGreatUsername hopefully they get to reviewing you quickly!

I'm another fan of cake/sweet things. Need to be careful not to over-indulge but there are many bits and bobs left from the girls over the summer hols so I suspect I will finish off anything already open (so it doesn't go to waste, obvs 🙈).

I've had a nice day painting Elmer props and finishing off Colour Monsters. Few more monsters to finish off but I'm off for a shower first and will finish off any remaining before heading out tomorrow.

I'm fed up with lying in bed doing nothing and getting no-where. Depression kept me in bed and cancer makes me wonder if it's really worthwhile bothering. No-one comes to see me or they all come at the same time and never come back and no-one asks me how I am apart from to pay lip-service. The cancer clinic don't know who I am, I have no idea what they're talking about - one minute the cancers 3 cm then it's 6 cm then it's 3 cm again. My Her2 is borderline and needs sending away and then it's negative. Then it's borderline again and needs testing again. Then it hasn't been sent off and it's going to take 3 weeks, then it's back in 2 days and it's borderline negative. And then the oncologist appointment is on the 19th September when the consultants are going on strike. Is he my consultant, I thought the surgeon was my consultant and what the hell is a consultant anyway? Why do I have to know all these things and words I don't even understand? All I want to know is "will he be at this meeting or will it be cancelled because he/she/they are on strike?" Why is everything so difficult? I've got an elderly cat and elderly dog and they've got a grumpy hurting human to look after them. I can't do my exercises as it hurts so much, it's like ripping raw meat and it turns my stomach. I've got to sell my house and can't afford to live anywhere else as I have to give half the equity to my sons father. And my son doesn't bother to see how I am and come help me pack up the house. And mental health services are popping in next week and meanwhile I've never been so alone or lonely. Please don't say speak to my bcn. I did but she called me the wrong name.

I also love cake and sweet things so am truly stuffed if there's any truth in the sugar causes cancer myths but I refuse to believe them and make sure I just eat cake if there are too many calories. Sometimes I balance with haribos.

@AGreatUsername I hope you get some better news soon.
Just as you solve one problem, others pop up. Re my extreme fatigue last week, I asked about an iron infusion and due to my very low iron level, they agreed and I am going in on Wednesday. So might get more energy from that. Great. Next problem. On the swelling front, things are getting worse. I was given a sleeve for my upper arm swelling to try for a month and see if it is a transient thing that will resolve. I have worn it for a week (hate it) and it has kept the upper arm from further swelling. However, I now have swelling creeping up around my thumb! I will have to probably get a sleeve with the golve bit which would make it really visible even with long sleeve shirts. I am desperate to be considered for bypass surgery but of course it is incredibly expensive unless I can get on the clinical trial (which I don't think I qualify for). I will check my partner's work place insurance (which includes me) if they cover it but otherwise this may become really difficult. Why can't cancer be a linear process of treatment and recovery? Why just one knock back followed by another? So upsetting.
Strength to all.

I’m big though and funnily the scales have been the same since the beginning but my body shape is horrific, I look like I’ve developed a fat back and neck and this funny fat under my chin. And fine downy hair. I can’t fancy anything it’s all elastic waists and trainers good god my profile if I catch it is jus ugly.

Sorry cross posted Strawberrycat Sorry things are so difficult.

I also got the fat on back and neck thing Each and no real idea why, maybe the steroids but I hated it especially the neck as its hard to hide and also did not put on weight. I wondered if it was cushings from steroids but no idea. Or Tamoxifen water retention.

I have not been on steroids for a year though and back is normal now but neck isn't. I hate it and would love to have a solution. I did fail one of the endo tests so cushings is possible.

@1Strawberrycat it sounds like you have a lot on your plate. Could/would you give somewhere like Maggies a shot? They are so very helpful and compassionate I find them way more use than my specialist nurses who never answer the phone.

@1Strawberrycat that sounds truly truly shite on top of the usual cancer crap. I'm another one who's cancer nurse probably couldn't pick me out of a police lineup. I'm not even sure of her name, that's how little contact we've had!

Do you have a plan when the house is sold?

I'm sorry you've not got a lot of real life support right now, but am sending lots of virtual hugs. I get what you mean about people paying lip service too. In my more charitable moments I try and consider that they probably don't know what I need from them right now - hell, half the time I don't know myself. But yeah, it does show you who you can really rely on.

@1Strawberrycat sorry cross posted. Really sorry to hear how you're feeling. Feel free to speak to us and do try Maggie's. I have not been myself but a friend who had BC four years ago said it was a lifeline for her and strongly recommended dropping in.

Sorry I keep dropping in and out of this thread, I know I'm like one of those annoying people you just want to tell to fuck off 🙄😅 Disappointingly, I've had no more run ins with the local constabulary this week!

Got the news on Friday that I'll need chemotherapy, starts on Wednesday and will last for five months. I went to pieces and spent most of Friday crying. I was supposed to be going back to work tomorrow FFS 😡

On the bright side, I got referred to the local cancer charity who have been really helpful. Amongst other things I am allowed free sessions with their psychologist so have an appointment tomorrow... I will probably spend most of it complaining about my mother 🙄😂

@1Strawberrycat sorry you are feeling defeated. I was being grumpy today but when I read your post I realised I am actually very lucky and happy apart from the double cancer nonsense. Have you got any idea where you want to live when all this cancer crap is out the way? Could you maybe rent for a while until you have recovered your health?( I have a fantasy about going and living in a holiday lodge by the sea away from all DHs clutter but he would just get worse while I was hiding from it). Or could you negotiate a delay in selling until your treatment is over? Is your Ex at all reasonable?
The hospital stuff will sort itself out eventually. You have a surgeon in the breast clinic who works with a team ( radiology, pathology, oncology) and they make a plan for you. The oncologist delivers the chemo or radiotherapy bits then sends you back to the breast clinic for follow up. In my case that is mainly with the nurses. My surgeon changes every time. (I like the current one.) The oncologist here works on strike days as she doesn’t want her patients to be harmed.
I wish the nurses didn’t all know me as I have been hanging around them like a bad smell for three years now. I bribe them with cake to get better treatment and it seems to work.
Having cancer does mean you get some priority from health services, and there are lots of nice things charities will send you. Have you asked for a Little Lifts hamper for example? You can get one free for chemo or radiotherapy and it is full of lovely things.
Sending positive waves to you. This too will pass!
Top

@AGreatUsername @1Strawberrycat @isaxx @PollyCreo and everyone else I've left out - big big hugs and I'm sorry things are difficult and upsetting. May we all somehow experience happy moments amidst it all.

Thank you @LuciaPillson 😊 I know I'm one of the luckier ones on here. Strength to you all xx

@PollyCreo what a shock to have your plans derailed like that. You are allowed to have a good wallow and maybe even a session in our Virtual Rage Room which has been restocked with old China and small televisions for you to smash up. Then you will pick yourself up and get on with it as we all have to. Your friends will all say how brave and inspiring you are and if you don’t tell them to fuck off you will deserve a medal or another session in the rage room.
Is your mother worthy of a Mumsnet thread? Or just averagely annoying?
I hope this week is useful and you get all the information you need. Ask us if you need help. Collectively we have huge knowledge of Chemotherapy and how to survive it.

I need therapy to cope with lovely DH and his obsessive collecting. My house is full of Stuff and I can’t get rid of it unless I get rid of him too. But he’s adorable and I am enabling him. Help!

@TopOfTheCliff thank you, you really got me 🥰
My mother... she's a whole other MN thread 😅

Getting my head around chemo now, I know it won't be pleasant but looking into wigs and eyebrows solutions. I'm not a vain person but I've had long blond hair all my life and I'll probably miss it when it's gone.

What is your DH collecting?!