Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

That kind of thing drives me mad @NoodlesandDoodles

@Enigma52 hope you’re feeling a bit better today.

@NoodlesandDoodles how annoying, I hate that. Good luck for Monday.

Planting a flag in the sand as I finished my chemo today, all 6 months of it! DH has bought some Laduree macarons to celebrate 🧁! I’m knackered and battered but also euphoric that it’s over!

ps lots of other stuff to follow including either tamoxifen or letrazole etc etc but this bit done.

Ooooh, no i don't feel better.
Still coughing and spluttering
Ache like no one's business.
No, i don't like this. Feel scared, teary and alone. My brain is going down a dark rabbit hole!

I want to climb outside my own body!

😳😳😥😥😥

@Enigma52 Are you on your own? Is there anyone you can ask to be with you? It's horrible being unwell and in pain and having to do everything for yourself.

@SewingBees all i do is cry at the moment. Cry and wallow in self pity.
Every day, I try and set myself small
achievable goals. Today. I couldn't surface until 12 midday. Then jumped in the bath and cried some more!

Then the Head at my school where I work rang. I just about managed to hold a short conversation re: my return, which won't be next week as planned. Fit note submitted. I expect I will hear from OH soon.

Was discharged from hospital on Wednesday afternoon. They drained a load of fluid, but some will have collected in pockets and therefore difficult to drain. I just don't feel as better as they said I would. Is this it how? Feeling " ill" until the ribociclib decides to take force?

Oh and I missed my much looked forward to, complimentary therapy at this week, as I was in stupid hospital. That's the third one I've missed now!

DP is around but getting exasperated with my negativity. No in-laws. Parents are miles away, but so wish they were closer. Colleagues see me as " sick" now just spout stupid platitudes now and then.

My neighbour ( this is a a good one!)
Diagnosed with primary BC 16 years ago. I told her of my SBC in December. She was then proceeded to chat about her kitchen extension for 30 minutes! We do a school lift share and every week,asks DS how o am. DS said " pick up the phone and ask her" Of course she hasn't.

CT has been brought forward, due to poorly lung and I'm scared. No appetite and I almost forget the bastard is in the lining of my stomach too.

Sorry for mass self pity post.
Primary BC, well it does seem preferable!

How are you @SewingBees
Are you back at work next week? What do you do?

@Enigma52 No need to apologise for feeling sorry for yourself. You're in pain and in a hell of a place that few people understand.

Can you go back to your 'team' and tell them you're not feeling better even though they said you would? Sounds like it might need further investigation/action.

You could also call Macmillan - it might help you to talk to someone who will understand better than family friends and (hopeless) neighbours. Even if all you do is blub down the phone at them you might feel a bit better afterwards?

Thank you for asking after me. I hope to go back to work next week but my boss has said he wants HR to advise if I need an occ health assessment first. But he's so busy and HR are so busy I don't anticipate that question being answered quickly. In many ways it doesn't matter too much because I'm luckily on full pay, but I do need to start engaging my brain.

I'm going to 'pop in' to see my colleague anyway on Monday, and stay for the team meeting in an unofficial non-working capacity.

@SewingBees I know what you mean
about engaging the brain; mine has gone to mush, without a doubt.

It's good you are connecting with work, I guess that helps you feel more in the " loop" as it were.

I spoke to UNISON earlier and apparently conversations are held over the phone, rather than face to face.

Will call the nursing team next week I guess, or perhaps the Christie hotline again. I just want to feel well for even a little bit. Maybe something is brewing, but I don't know what. The whole of February I have felt rough. Perhaps it's the pleural effusion.

OH conversations I should add.
Must chase that up, as the referral was done a couple of weeks ago.

just saying hello. Waiting to find out if I got secondaries, I am told the scan looks "worrying" but nothing else except wait for appointment in April

@Enigma52 I'm sorry, sounds like you’re in a very difficult place. Feeling poorly is the worst! And a lot of people around us(you) do seem to fade away as our lives are consumed by this, it’s just miserable. And I’m sorry your parents aren’t closer, I’m sure it would help you and your DH.

I definitely think you should call your team to see if there is anything they can do to help move you through this. And MacMillan too.

It’s hard to think of anything at will help, if only the weather would cooperate and be nice enough for you to enjoy sitting outside for a while. Thinking of you 💐

@minimidge welcome! Sorry to hear your news, April seems a long way away. Are you feeling ok?

Glad that part was useful!

I'm out of it this week, been feeling terribly anxious. I actually missed out a whole load from the slides on diet. The section I posted was the advice for chemo brain and anti-inflammatory.

briefly, the rest also included the usual advice we get from reliable sources:

--eat lots of rainbow coloured plant foods, especially veg

--avoid or limit alcohol

sending you lots of love @Enigma52 x

@Enigma52 I can't imagine how you can be dealing with work right now that you're going through such horrendous medical issues.

I really hope the school aren't pressurising you to return too soon.

It sounds to me (no medical training) as if you really need time, peace and calm to gradually recover from the pleural effusion. Let alone everything else that you're having to deal with.

I'm not surprised you're struggling. I'm so sorry you feel so scared and alone. Please keep us updated how you are xxx Thinking of you x

@BreakfastClub80 Thanks. Just needed to let it all out I think. You are right, people are literally disappearing in front my eyes. They don't want to know! My best " friend " of 40 plus years, is being the absolute worst. Not interested; never calls. It's very hurtful actually. Will call the team next week I think.

Where are you up to with things? Is it surgery next ? How are you feeling about it all?

@minimidge really really hoping your scan isn't as worrying as they think. If it is, you have joined the right group. These are a lovely bunch, who get exactly what you are thinking and feeling. Keep us posted 😊

@SummerCycling well the Head wasn't pressuring me into returning, it was just a few words he dropped in, making reference to schools being busy places/ germs/ needing to be A1 etc. Yes I I know that. I have worked in many schools, both as a teacher and TA. I know they operate. I just want to hang onto one little bit of non bloody cancer related life ( and yes I may never return to the school) but let me have some hope!

Anyway, I hope everyone has had an okay day?

Thanks for virtual support. It really does mean lots right now 🌷

Just checking in.
First cycle was Tuesday. Had a mild reaction to something which made me wheeze, so was dosed up on antihistamines which knocked me out and made me feel horrendously sick the next day.
Yesterday felt okay, managed a little bit of exercise and did a few house bits but today my eyes feel like they're floating in my skull and I'm struggling just to walk around the house. It's like the worst hangover ever.
Having horrible flashbacks and now feeling panicky about my next cycle. I feel so pathetic.

@youdontneedtopoo sorry you feel so rough. Please get on that sofa, rest. Make notes of all your side effects- they can tweak meds.
one down, try not to panic.

I had my ct scan on the 21 feb for my tumor in my anterior Medistinum area. Got my appointment on the 6th March with the consultant. He said when he booked the scan he’d have me in for a chat after the scan to see if there was any change. If not it will be 6 months till the next one. I know deep down there has been change as my neck, top of back and chest area have been painful. My neck and back have been sore for years but it’s got worse. Iv not been coping mentally with all this. My anxiety is awful. I can’t even look at my mobile with worrying the hospital has phoned. I’m going to ask for anxiety medicine at the doctors as I feel like I’m having panic attacks most days.

@youdontneedtopoo I agree with @thesandwich , write down everything and speak to your team about it. My first chemo cycle was the worst as I got really bad headaches. The pharmacist realised it was from steroid withdrawal and after that I always weaned off steroids. The headaches never happened again. I also got acid reflux so started taking antacids throughout rather than only when it came on. Might be worth asking to stay on a lower dose of antihistamines?
Overall, my cycles got easier so hopefully yours will too.

@Shityshitybangbang do you have anyone to talk to? Do you think that would help? I’m sorry you’re dealing with this, the wait to see your consultant must feel like forever. I think you’re right to speak to your GP too.
I have only really coped through these times by compartmentalising but I’ve only been able to do that because I haven’t had any pain etc, which makes it a bit easier to ignore. I hope the news is better than you fear 💐

@Enigma52 that’s unfortunate about your best friend, one of mine has disappeared since the new year when she stayed with me whilst my DH and DD went skiing. But she started a new job and I know she does disappear in these circumstances regardless.
I’m wondering if anyone will pop back up after my surgery (it’s at the end of March) but not banking on it. On the other hand, I’ve found out that I’ve got friends who are so wonderful and inspiring.
I think most people are so busy these days that they can turn the support on for a while but gradually their life takes over again. For a lot of us, the treatments and side effects and illnesses take much longer so we can’t get back to our life as quickly. But the very worst is when you’re feeling poorly and in pain, I tend to catastrophise then and worry I will never have my life back. Hopefully we all will, and the sooner the better!

@Shityshitybangbang just wanted to say that I know how you feel on the anxiety front; I'm the same.

I have sertraline from the GP, but am loathed to put more poison into my poor body.

My phone rang the other night NO CALLER ID. This only appears when the hospital ring. My heart went into my mouth, but It was my son!

Sending virtual support ❤️

@BreakfastClub80 you have hit the nail on the head. The pure unadulterated fear that surrounds this rubbish, is immense. I forget that people have their own busy lives and it does all revolve around me and my pain and suffering. Maybe I'm jealous because they healthy and can breathe normally. That they don't have to worry scans/ medication/ side effects/ pain/ canulas/ fluid on lungs etc. Yes I am jealous and that's unhealthy.

Doesn't all revolve round me..

Enigma52 · Yesterday 21:39
BreakfastClub80 · Yesterday 21:3

thank you for your kind words. Hope yous are doing ok. I’m waiting to see a phycologist. Not that that will do any good. I tend to keep my emotions to myself. It’s the panicking that’s really bad. If a number comes up from my local hospital or a 0131 number I literally hyperventilate. I work from 9-1 in a noisy warehouse. I even keep my phone in my car so I’m not looking at it to see if I have a call.
Im reluctant also about tablets, putting poison in my body. Before I used to pop pills like sweets. I have convinced myself that’s what gave me my colon cancer and this mass in chest. I know it’s not but your mind can make you think that. xx

@Shityshitybangbang how are you doing today?

I too am contemplating seeing a psychologist, but I doubt it will help much. I've also decided against the sertraline, as I don't want to feel utterly grim, as opposed to grim.

Been investigating gummies with additional " ingredients" to maybe help with sleep, not sure yet!

You won't have given yourself the colon cancer, if it's going to happen, it's going to happen. Seems you are lucky these days, if you can avoid ANY disease/ condition etc. Don't beat yourself up about it.

Hope today is better.
I'm still coughing, this could be it now, until the meds ( hopefully) kick in.

😊

Hi yes feeling ok today, still got my appointment on Wednesday but am trying to put it to the back of my head.
The oncologist said that too about the colon cancer, I was one of the unlucky ones. She says she has had strict vegan eaters, no alcohol and rigerous marathon runners being treated. But your minds all over the place when you get cancer. I think I’m mourning my old life. If that makes sense.
Hope your meds kick in soon. It will give you relief from the cough. 💕xx