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

[LemonDrizzle10]

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I do hope my DC don’t have to have therapy as a result of my parenting.

My DH is a connoisseur of classic bicycles and has over 100 of them in our house. He gets his state pension soon and seems to think it is fun money for buying more bicycles. He restores and repairs bikes and rides them every day. I have been too weak through three years of cancer fun to fight him so the tide of clutter is very high in our house. There are pedals and cranks and sprockets everywhere. Well okay none in the bathroom or bedrooms so far.
Give me ideas for how to deal with him and his stuff. I did suggest moving to his and hers bungalows so he can live with his bicycles and come to visit me but I would miss him. I wondered about hiring burglars to empty the basement. Or a big auction to sell off the less loved ones. But until I am better I just watch and wonder and plot my revenge.

@lucysmam thank you for asking - I managed to get out and enjoy the sun with my two kids and I really felt the most normal I have done in a while.

@1Strawberrycat I am so sorry to hear how you’re feeling and hope that my moaning about not going out in the sunshine was not too trivial. That all sounds really shit and so unfair on top of everything cancer related. I also wonder whether Maggie’s might be helpful - I am a big fan of them as my aunty was one of the original founders of it with Maggie so I have always felt they were wonderful like she was. Is there a local centre to you? I don’t know the answers to the medical questions as I find it all confusing myself but maybe that is the kind of thing they could also help you with at Maggie’s. I totally get if you don’t want to engage with that kind of thing as I have struggled to force myself to get any emotional support but I have felt proud of myself for doing it in the end. Sorry if this is all waffle but I really feel for you from your post. Sending lots of good wishes x

@1Strawberrycat Macmillan can be worth trying as well, they have a financial advice line who might be able to see if you are eligible for any financial support you aren't getting like pip, esa, Macmillan grant, uc - these things can be painfully slow to get and a lot of hassle but then can be awarded for quite some time. Macmillan also have a counselling via BUPA scheme, Maggies have counselling and our one has things like art sessions, yoga online, a Where Now course after. I also used Samaritans when I felt really low, often they said the wrong thing but it was someone who had given up their time to help others which was all that mattered. I also found the charity SomethingToLookForwardTo brilliant, they gave me a week in Cornwall for our family, a night in another hotel, a boat cruise and tickets to a gardens. Sometimes I found counselling couldn't do anything but the days out could help change my mindset by seeing things worth carrying on for and knowing that someone very kind had donated and cared. I found BCNs quite variable, at ours you can change.

@LuciaPillson I got a rechargeable battery heat pad from Amazon as I was freezing during chemo (literally with the cold cap and ice slippers!) - it only lasted about an hour but I used it three or so hours in when I was getting really cold. Other than that I just had lots of layers.

Oh that sounds like a good idea.

Getting measured up for radiotherapy tomorrow first thing. On my birthday! Nieces are down as well I don’t know whether to take them with me just to show them a different side of my life or not. We will then go for lunch in Covent Garden using those free vouchers I applied for.

Happy birthday @EachandEveryone and good luck for tomorrow.
Hope you get to have lunch in the sunshine - where will you go?

@Florabritannica happy birthday!
At my end, a surprising turn of events with the nodule in my arm. This information might help someone in the future as none of the nurses, physio, doctor, or radiologist I asked seem to have ever encountered what appears to be nodules associated with cording. (I found two research papers from about 15 years ago that mention it, which prompted the course of action I took today). The first nodule was biopsied a few weeks back and showed only water. The second one (not scanned or biopsied) that popped up a few weeks later became really big yesterday, painful, red, and even harder than before. In desperation, instead of giving it a rest, I stretched my arm to the limit today, practically hanging off a door, until the cord passing through the hard nodule was super painful. Then, suddenly, the pain stopped! I felt the nodule and it has halved in size! It has certainly calmed me down about what it was. So, if anyone gets a really bad case of cording and, weeks later, mysterious lumps in the arm, it may well be connected..

Happy Birthday Each

Glad its improving isa. I had cording after my surgery and just got fed up with it and stretched beyond the limit thinking this will either solve it or break my arm and thankfully it snapped and solved it and I had normal movement again.

I too am one of those people that drops in and out of this thread. After being immersed in Cancerland, I’m gradually trying to leave and get some sense of new normality.

I returned to my yoga class on Sunday. I found it a little bit emotional to be back in the class doing something that I had stopped because of the bastard lack of hair. Can’t wait to go again and hopefully radiotherapy won’t stop me.

Out of interest, does anyone have a sore lower forearm where the chemo went in? I found during yoga that this part of my arm hurt more than the lymph nodes. Will it get better the further out from treatment or is it just part of me now?

I can’t recommend Macmillan enough for helping with financial advice. The lady sorted out my ESA like an angel from above! I’m very grateful.

Hugs to those needing it today. @EachandEveryone hope the measuring session goes well - that’s my next step. @TopOfTheCliff I do enjoy your updates. I think you should combat the cycle invasion of your house with a trip to a chandlery! @lucysmam Your teaching resources are amazing! You are so creative…your school must love you!

Top I did wonder with the bikes do you think he would go for a cancer charity auction of bikes? When I met DH he had about 50 towels and socks full of holes he would not part with despite money being not an issue and I eventually solved this with a donation to a charity bag with an apology note from me and some decent things from me to cover it. There's a lovely charity SomethingToLookForwardTo, though any charity could work.

Thanks @Whattodotomorrow I'm quite enjoying working through the list I have atm (Owl Babies today) - not sure what I'll do when I get to the bottom of it 🤔 I'm sure there's plenty more I could do though!

I agree about Macmillan helping with financial applications - the lady who rang me literally needed just my bank details to complete my PIP application & it came through in a couple of weeks. Definitely appreciated with all the travel to/from appointments.

@EachandEveryone a free birthday lunch sounds even better than just a free lunch! I hope you're off somewhere nice?

My dad has realised this morning that he could have been driving me to and from appointments while waiting for his updated one to arrive. So no bus to get bloods done this week & dropped off at the door of the chemo unit 🥳

I'm a tad baffled by the appointment system for my oncologist today - I need to change the 20th, either to the 21st or either the Weds or Thurs of the week after. The receptionist who rang back could only offer late pm appointments for the Weds which I don't really want once waiting times & waiting for buses is accounted for. So, I enquired about changing to ether Thursday as a one off - apparently the different day needs to be approved by the oncologist 🤷‍♀️

What the difference between Weds/Thurs is, I do not know. Plenty of folks having the same treatment as me on a Friday go on Thurs to the same clinic. Anyway - apparently there is no movement whatsoever, so wtf am I meant to do? Change my (paid for) plans, again, or skip this one? Or...I don't know.

Maybe if I had been listened to when I asked for late morning because it's easier on the bus, I wouldn't be struggling now but the lady I spoke to last week was in such a rush I don't think she was at all listening to anything I said. I'm quite glad I didn't ask her any of my list questions tbh, I suspect they'd either have been dismissed or not answered enough.

Hi all, can I ask those of you with breast cancer what did it feel like?

I've had a biopsy of a lump I couldn't and still can't feel as my nipple became inverted and I got sent to the breast clinic because of that.

I
Dr said it was most likely cancer but wait til
The biopsy results are back but then he said if it's not cancer I need to be very aware of my breasts because of my family history, but what am I feeling for??

Hi @Eggtheparrot, hope you don't have to wait too long for your results, everything seems to be a two week wait with breast cancer! I can tell you that mine felt like a ball inside my boob, on the side, I found it whilst showering. My cancer is invasive ductal. I'm not sure how other types of breast cancer would feel...

Happy Birthday @EachandEveryone hope you had a lovely lunch!

I had my picc line inserted today. The guy (Bill) said I behaved very well for someone who looked terrified when they walked through the door :). I think I was probably stressed from being late for my appt, I hate being late but idiot people who can't drive caused multiple accidents on my journey holding me up.

I'm starting my chemo tomorrow which is also probably making me quite tense. My OH is out bike riding tonight with a friend so I am visiting said friends wife for a lovely bit of cold rose.

Its so hot, we have no aircon at work and we have heat presses active at 160 degrees, I literally feel like I am melting....

Hello @EggTheParrot and welcome. The short answer is anything unusual for you needs checking out. Lumps can be benign or malignant, and a typical benign lump will be smooth and mobile and doesn’t affect the skin. A malignant one may be hard, craggy, tethered to skin or muscle, and the skin may be reddened or puckered. But to be honest they all need checking out and the days of GPs reassuring you without referral for tests are long gone or should be. My lumps were so small and I had had years of cysts so I nearly didn’t get them checked but both were cancerous. Nine out of ten people going to the clinic get a benign diagnosis. It’s a horrible time waiting for results so feel feel to rant here but Stay Away From Google! Stick to Macmillan, NHS or Breast cancer Now sites as they won’t frighten you as much.

@Whattodotomorrow lovely to see you drop by. I love my yoga class and it really helps stretch out the arm and shoulder muscles that get so tight after radiotherapy as well as healing my soul.

I am almost a week into the Zoe Project now with the blood glucose monitor on my arm and a series of bizarre food tests to do. It’s very interesting and I really like the food combining principles. I’m getting nice normal results which is a comfort as I am about three stone heavier than I should be. I won’t start losing weight till I’m off the Capecitabine as lowering calories makes me even more exhausted than I am already. Seven weeks to go! I just made a very healthy carrot cake with raisins and almonds as well as carrots and no icing on top.

I look forward to graduating off the thread and becoming a casual visitor but I think I may be trapped here forever in a doomed manner like the ancient mariner.

@Whattodotomorrow I have the sore forearm on the chemo infusion side. It felt really tight in that area so I stretched it a bit. Poor arm has had all sorts of chemicals pushed up it - no wonder it’s complaining!

Happy Birthday @EachandEveryone, hope you’ve had a lovely day…and cake, obviously 🎂

I'm another one that has been dipping in and out of the thread. I wanted to ask about scans. Is it normal to have CT, Pet-CT and then MRI after a positive biopsy for BC?

I had BC 6 years ago and now have a recurrence in the same area.
I haven't seen the consultant for 8 weeks while all these scans have been happening. I am due to see him Friday for results of pet-ct but then out of the blue today I have been called in for an MRI on my spine.

I am just wondering if this is normal practice or whether I should be worried?

Well, after all the difficulty getting through to someone, and then changing my appointment...it was very easily changed by the oncologists own PA to the 21st, just after 11am 🙄 She was lovely on the phone too - I quite often find I can feeeeel the eyeroll when I'm asking for using public transport or already having something on the calendar to be accommodated 🤷‍♀️

Shame you can't bank sleep though - it'll be a late one the night before 💤💤

@Whattodotomorrow I meant to reply about the sore forearm earlier, LemonDrizzle's post has just jogged my memory. My left one is sometimes sore - feels bruised even though there's nothing visible.

@EggTheParrot I hope you're not waiting too long for answers - it's bloody horrible waiting!

For a positive addition to the thread - dd1 bagged her very first job this afternoon! She's filled in the (online) paperwork & is just waiting for her first shift now. We need to pick up some black jeans for her to wear, at the weekend.

@Crimsonbow @Scandimandy @LemonDrizzle10 @TopOfTheCliff thank you for all the present suggestions for my friend. Afternoon tea in the post sent me down a rabbit hole of what subscriptions one can sign up for these days 😁 I ended up with a book subscription, as we are always lending/recommending to each other so I know her taste!! Plus some Prosecco to drink while she's reading. Hopefully all that will go down well!

My DC are back at school and I am sooooo grateful. AND they're at the same school now so only one place to take them and we can walk to it. Hoping that this helps stop me gaining too much chemo weight- I know it's not the end of the world in itself if I do, but I really can't afford to outgrow all my clothes.

@lucysmam congrats to your DD!

@Scandimandy good luck with chemo.

@EggTheParrot put a marble under a couple of layers of blanket and roll it between your fingers a little. Mine felt like that, although not as hard as a marble. Felt the same to me (and the GP) as my previous fibroadenomas, so that may be an uncommon presentation!

Any Stephen King fans looking for something to do may like to know that his latest book, Holly, is out today. And with that news I'm off to read it 😁

I'm not up to date with the thread as I was on holiday last week & see it's moved on by at least 10 pages since before I went! I suppose I'm a graduate of the thread, as Top put it, but I'm still have to take my daily cancer pill (currently Tamoxifen) and have the bone infusions over the next 2.5yrs, so I still check in most days.

While I was away & out of my day-to-day setting I could go the whole day without thinking about any aspect of my cancer experience. I couldn't go longer than that because every time I get dressed or undressed, the changes in my body serve as great big reminders! It made me feel irrationally jealous of people with different cancers that don't have lasting visible effects (if there are any), because they could go longer without being reminded of it. What is the longest anyone on here can go without being aware of it?

@HauntedDishcloth
Dunno, I'm reminded all the bloody time, what with the ostomy and the portacath and the low weight and the not-good diagnosis and the resulting constant terror anxiety. But I guess my best solution is not to let my brain think about things. It's a no-think zone around here! So getting immersed in a series or a book or... uh.... a thread about whether someone's being unreasonable to take a bite out of five random LPs in her DH's vinyl collection because he inadvertently dyed her white sport socks a mucousy shade of green and he thinks it's funny AND ALSO (drip feed) he has a stupid nickname for the cat (ltb!!) helps. 😄

Also forgive me for my ignorance but are you, or have you got a haunted dishcloth? 😁

I'm a two time graduate of this thread, does that mean I have a masters in cancer patient😂 I can go for quite a long time without actively thinking about cancer and can carry on leading my life.
However I don't think it's ever that far from my mind.
For me what brings it all back is hearing people plan for the future and their assumption that I will be there with them.That always rocks me back on my heels. When it happens I have to take a deep breath and carry on because I want to get all I can out of my life and I think I do

@HauntedDishcloth its nice to forget about it for a while isn’t it? Currently I have to remember several times a day, showering and dressing - I wonder if that will change when I have the reconstruction? I hope so. And radiotherapy - which I’m almost getting used to.

I think I’ve had a virus or something the last couple of days or it’s the radiotherapy kicking in. 11/15 at the moment. I’m exhausted and I can’t sleep. Husband keeps crashing about and all I want to do is sleep at 9.30pm! I was so fatigued yesterday I stayed in bed until lunchtime and he had to drive me to radiotherapy. Not feeling much better today.

But I did have a good run of a few days and we managed to get up to the city to see the Goddess exhibition - about women’s image in film, dinner and a light show.

I start to get excited and make plans and then I end up feeling dreadful again. Just so tired.

@TopOfTheCliff you’ll get there. You can see the end. Time will do it’s job and it will be over. I can’t believe it’s seven weeks since my surgery today.

Keep on keeping on… that’s all we can do. X

I also have finished treatment. I have said before that it’s easier physically to have had a hysterectomy than other things because it’s inside, though I am reminded sometimes when I pee and worry about finding blood (it has happened since my cancer because of vaginal atrophy). I also still have a chemo hairstyle to remind me, though it’s not looking so mullet-like since I had it cut! It’s a mess though, including the grey growing out, and I feel scruffy for work.

I don’t think about cancer much at the moment, and I’m getting used to planning life as if everything is okay. It does come into my mind every hour or two but not in the panicky terrified way it was earlier in the year, only as a fleeting thought, but I think that’s because I’ve fairly recently had a scan and a biopsy, I think it’ll come back nearer my next exam / scan.

@Whattodotomorrow I had some residual vein pain in my arm after chemo but it seems to have gone. I’m getting back into yoga too!

DD is still home from uni and I have rejoined the posh gym I was a member of before cancer (more normality!) so we are going to spend the day there by the outside pool.