Thread #6, living with incurable cancer, taking ALL the drugs, and remembering our fallen comrades

[SewingBees]

New thread!

Yes I think there is as it’s changed colour. I got up this morning and couldn’t get there in time I had to drag my drip stand and push things out of the way. Luckily I had a nappy on. I’m so humiliated. My niece has gone back to St Andrews via my sisters in Yorkshire. She was so helpful and seemed all grown up all of a sudden. I will miss her.

good luck today. I think they will put the camera up me later.

Have you had the camera yet?
Scan done. Wait for the 💩 to hit the 🪭

Has it at about 4. Passing loads of blood now and the nurses freaking out making me have bloods and everything. I keep telling them the 599k biopsies. The surgeon said it looks less inflamed so the steroids are working, I haven’t seen the oncologist yet. I would love to be set free tomorrow. I guess they will be messing with my steroids for awhile.

i hope you manage to sleep tonight, when will you hear?

Hang on in there. Hopefully things will settle eventually, they have to! Are you on a ward or own side room? How do
you feel in yourself?

I expect I will hear this week or next.
Totally exhausted.

How’s it going @EachandEveryone?

Okay, I'm back to give my review of the grounding sheet part 2, but before I do can I just say I'm so sorry that we are all going through the mire and honestly, if I could take away the utter shite that it is for all of us I would. Hating this at the moment.

Review of grounding sheet on the second attempt of placing it where it hurts the most (see previous post):
Reluctantly, because I do not want anyone to spend £80 on a piece of fabric with silver coloured threads running through it and then say it didn't work for them, but I think it's working for me again. Replaced it where my shoulders/upper torso would be and after 4 nights of use I've either woken up with less pain than usual or no pain. HOWEVER, the pain and inflammation is back usually within an hour of waking, so I'm still on the fence but sleeping better for it. I asked my husband to trial it for us on his bed in case it was a fluke as he has a dodgy knee but he refused (scaredy cat). Also, you can't place your mobile phone on it as it doesn't like it and it gives a bit of a weird 'shock' even though it's only plugged into the earth pin and not the electrical pins, but the company I bought mine from does warn of this. And you can't really wash them in the machine so I've been airing mine out in front of an open window every morning.

Action shots attached.

I got so tired and out of breath this morning trying to change my duvet cover that I bit the bullet and put an ad out on Facebook for a weekly cleaner. It took me an hour and a half in total between resting periods to get the whole bed changed. Will see if I can claim PIP to get help towards the cost. I can't believe how expensive it is to be poorly, I'm spending so much money at the moment trying to be comfortable with fancy support cushions, creams and potions to deal with the side effects of the treatment, the prescriptions I paid for initially for all the pain relief because no one thought to tell me I could fill out an exemption form until 7 weeks after my diagnosis (£90+ spent in total which I cannot claim back), and now not able to work and DWP being a whole 6 weeks behind their deadlines to make contact. I don't know how I would have managed if I the household was dependant on my income. Scary times.

@PrincessFluffyPants hello from
stifling hot Cheshire!

Re: the groundsheet. Think I’m going to give it miss. Like you, I’ve spent shitloads of cash recently, on creams, lotions, potions and god knows what else. My pay is going to come to a grinding halt as we progress into this year and then we will be screwed. Luckily DS is working and has cash. DD is at uni, working, but has a mega expensive social life. So every other day, it’s “ mother could you lend me x”
She’s got Leeds festival coming up too! 🙈🙄 sigh!

Are you claiming PIP? If not, get an application in quick! Also a pre payment certificate. Think it’s something like £11 per month and you can have as many prescriptions as you need.

Im also on the hunt for a cleaner. Im
done in. 4 adults living in the house at present. It’s taking its toll.

Scan results on 26th august ( unless I’ve a blood clot or I’m about to die!)

Onwards and upwards!

as you have cancer you’re eligible for free prescriptions you just need your GP to sign the form x

I’ve been having these thoughts.
What if I just quit all treatment, before they tell me the inevitable and let my body do its thing.

No scans
No scanxiety
No canulas
No blood tests
No jumping out my skin when hospital calls
No nausea
No constipation
No bowel blockage fears

Maybe it’s liberating
Maybe It’s utterly utterly selfish

How do I look at the family, with these thoughts?

@Enigma53you know what? No one can understand what you’re going through and how absolutely dog shit the treatments are, I think you need to chat with your family and get some information from your team but it’s important to make the right decision for you. There’s a lady on TikTok called ‘pippavulvarcancer’ she had the same operation I’m having (on Christmas bloody eve), she’s just found out the cancer has come back despite the chemo and the surgery so she’s declined everything and is going travelling with her husband and dog. And I don’t blame her one bit!!

@sellotapechicken but how do you make peace with a decision which will devastate those closest to you? Just how? For them, treatment = hope. For me, treatment = hell. I just don’t know. I can’t look at DC, so young and needing their mother, with these thoughts.

Please don’t tell me your mammoth surgery is on Christmas Eve?? I thought that was curative surgery? To allow to you live without fear of it returning?

Yes it is!! Yes the surgery is meant to be curative but sadly for pippa it has already spread before the surgery but they couldn’t see that on scans (microscopic spread ) I might throw my dummy out the pram and demand either November or Jan!

I had it in my head your surgery was July then moved to October?

No, I must die with the knowledge that I did everything I could. Having DC, living parents and a partner, changes everything.

Well, still intrigued by the ground sheet, but I'll pass on the £80 pricetag! I didn't realise they had to be plugged in. Interesting reaing @PrincessFluffyPants .

@EachandEveryone did they set you free?

@Enigma53 we're off to Wythenshawe this Friday. I fired off a grumpy email that no-one had responded about my medication query, then found a reply in my spam emails telling me to use the accessible entrance 🙈 oops. In the market for Leeds tix for next Friday - we keep checking for resale, just in case.

If you let your body do its own thing - there might still be nausea and constipation, and jumping out your skin when the hospital calls - I imagine they'd call more to check up on you!

@GoldenDog1 how're you?

We went out for breakfast with my dad this morning, showed him a house we'd applied for. Lovely house, niceley decorated, clean, good garden. Yeah, didn't get it. Landlord went with the application of the other people who viewed it. <sigh>.

Onwards & upwards indeed @Enigma53 . No other way to go.

@lucysmam I'm ok.
Had a CT scan on Monday, been told it will be at least 3 weeks until I get the results.
I expressed how unhappy I am about that but not much I can do about it.
Had chemo yesterday so feeling a bit blurgh this morning.
My GP arranged for me to have extra bloods which have shown my B12 and vitamin D is very low which probably explains why I have this bone deep fatigue and my head feels like it's constantly foggy.
Hopefully now I can get on top of it.
Sorry you didn't get the house you were looking at.
Hopefully an even better one will come through for you.

@Enigma53 good luck with your scan results too lovely. I hope you get some positive news.

@EachandEveryone how are you today?

Love to you all xxx

As I was reading what you had written this came to mind. A long few years ago I had my worst bout of depression, and I had a wonderful hospital psychotherapist assigned to me by the NHS who told me something that has stood by me through every depressive episode I've had since and that is that we are allowed to think what if without any guilt...it's a comfort reaction to plan an escape route when everything in your life is overwhelming and you can't see the point anymore. Having the escape route doesn't mean you are going to act on it, it just sits there in the background. It was quite liberating to know that I didn't have to feel any guilt at all about planning my "escape", I found it empowering knowing I had a Plan B and was able to carry on and get stronger mentally because if it.

Not one person here will question your resilience and I can only send you strength that you get through another day without little pain and in minimal discomfort, whatever decision you end up making for yourself over the next few weeks.

@PrincessFluffyPants thankyou, that’s very reassuring advice. It’s the guilt which eats at me. If I can have some kind of affirmation that it’s okay to have a “ Plan B” then that kind of makes me feel less “ bad” I probably never will act on it voluntarily ( and unless I’ve no choice ) more than likely carry on with things ( as tough as it is)

How are you today?

@GoldenDog1the waiting for scan results is the pits. Unless they see something awful, I won’t know mine until 26th Aug! Fingers and toes crossed all is stable for you too lovely 💕❤️💕

Currently in my chemo chair. HB is down to 82 from 87 in a week, so currently waiting for a doctor to make a decision on treatment. I’m exhausted because I took those fecking steroids too late yesterday and was awake all night! This is the when my Plan B ignites @PrincessFluffyPants

I’m still in! This is my fourth admission this year! My inflammatory markers are down they just need to be down abit more.

the tvn came and put me on a pico drain which will be coming home with me and which the district nurses are going to love.

I think I will cancel the carers as I can’t face the thought of the council going through all my finances when I barely have anything. I wouldn’t know how to get three months statements off my phone.

im on oral steroids 8 tablets! Which will be weaned down.

i pray it won’t affect my immunotherapy.

i should be home at the weekend

Omg my tumour is responding it’s halved in size I can’t stop crying

Omg, that’s amazing!!!!
Immunotherapy is working!! Hooray!!

Aw @EachandEveryone that's fabulous news! 🥳

Hopefully that's given you a boost!

How's chemo going @Enigma53 ?

@lucysmam chemo is chemo 🙄
So far, I’ve watched a relative faint, a patient vomit and 2 “ oh shit this patient is having chemo reaction” alarms!

@EachandEveryone brilliant news! Hope your hospital stay is short.

OMG! I am so pleased for you! The best news to hear all day! Amazing! How are you going to celebrate?

That’s incredible!!