Stop feeling guilty, small rant (BENCHLAND) (Part 1)

Life after a breast cancer diagnosis Living with breast cancer
1301

Good evening Ladies…

just read the article in the Guardian about what not to say ---- and some of the responses (on the webpage)

Quite amazing how so many of the respondees seem to feel a bit ‘insulted’ that their comments to the BC ladies are misunderstood. Yes it IS hard to know what to say when we tell friends we have/have had BC, but surely people can think a bit before they open their gobs. Or perhaps try NOT to think of something appropriate, just empathise…

My Support Group of One said ‘oh sh#t’ which just about summed it up.

ho hum

grumpy

Must go to stir the scotch broth for visitors tomorrow - if there is any left over, I’ll send it to Benchland if someone else can provide the nice bread

1302

Not sure which bench I need to sit on. Had a really bizarre 24 hours, from an all time low yesterday to finding shoots of human kindness today. Yesterday I was feeling totally deserted by my department & work colleagues & today I got a text out of the blue from one of them who hasn’t spoken to me since my MX in January & also had a leaflet for a support group through the post from another. I also discovered from a visitor today that despite my boss not acknowledging me saying I had reached my 10 year service point the news was sent out in an internal newsletter which also mentioned that I was off having treatment. Feels really weird as with me not bring at work & seeing internal stuff I was the only one thinking my service had gone unnoticed. Maybe a paper copy sent to me might have been nice. I also went out to lunch today with a friend & whilst we were chatting in Cafe Rouge a gentleman came up to me & took my hand and asked how I was doing & proceeded to tell me that his sister had just gone through treatment for breast cancer. It was quite a surreal moment. My friend thought I knew him but he was a complete stranger. I was actually quite touched & he wished me luck. I did do a quick check of the prosthesis positioning as I wasn’t aware that my friend & I had mentioned BC during our conversation so maybe it was just a lucky guess on his behalf that it was chemo for BC that I was undergoing. I feel a bit teary now thinking about him. I didn’t feel offended at all, quite the opposite. Bless him. He didn’t have to do that.

Despite going out for lunch I also had another visitor tonight as well…and we snuck out to have a very quick drink & check out the OH of rock chick Cromercrab whose band was playing. I didn’t stay long but it felt good to be naughty!

I am now tucked up in bed minus bunnies as they seem to prefer the garden tonight ( but being a softy the back door is open so they can come in later). I feel stronger today having made it clear to my family that I need their help for the rest of my treatment plus organising social activities on good days to offset the isolation of being alone during the week. So crazy sobbing lady to happy slightly stunned one.

Night all

Twinky x

1303

That’s good news, Twinks. Being naughty is sometimes the right thing to do!

Off to my pit and it looks like the CSL bench isn’t quite as populated as it’s been recently.

Sweet dreams, and here’s hoping I don’t end up on the insomnia stool again tonight. I’m getting bored of seeing 3am.

CM
x

1304

mornin choccie - it’s 10 past 3!!

1305

I am glad you are feeling slightly more recognised Twinky, it is a lonely thing this B…disease especially during chemo. As for 10 past three Norberte it is dark and so quiet here at 4.19. However, reading the forumpistings (i do love the ipad spell check) makes it less of an ordeal…so budge up on the. Comfy bench I am going to browse the Internet until sunrise.
Cackles

1306

Twinkie just a quickly to say how much I enjoyed reading your post today. I hope things are on the up for you and that you feel less alone. lOve to all others in Benchland. Val

1307

Someone must have put lavender on my pillow, for the first night in ages I managed to sleep most of the night without hot flushes, bladder, cat or disturbing thoughts about what I’d like to do to the ******* waking me up. Feel almost human today! Having my “last day of freedom” before the new job and enjoying it, as well as the prospect for Monday.

1308

Have been on CSL bench for a bit today. Pharmacist phoned up and said I should take my chemo. I have to take them tomorrow morning so that means the weekend is trashed. Onc isn’t going to reduce dose. Had some stuff planned so just a bit miffed. Didn’t get the call until about 5 ish and I hesitate to take it at night. Had a good day with friends today and that phone call brought me back down to earth with a jolt. Moan moan

X sarah

1309

I havn’t visited the benches for some time but really must take up residence on the “why doesn’t my mum understand” bench. My mum has been responsible for quite a few visits to the benchs since I was diagnosed, but todays telephone conversation really got me infuriated!
I finished rads on Tuesday this week, and returned to work (after a nine month treatment plan of surgery, chemo & rads) yesterday. My conversation today was all about work. I explained I had done two half days as I am very tired. Today my work colleagues finished at half two and so did I (I did not want to be in office on own in case I had to answer the phone - I am not up to speed with current work stuff yet and I was really tired). My mum asked why I didn’t work any longer, and I told her why, then she said, “you can’t go around the rest of your life saying you need a rest due to having cancer”, you have to get on with it, I always have had to. This is depsite me telling her my doctor said I need rest and that most people take a month off after rads to recover! My mum then said"you have had nine months off, you shouldn’t need anymore!" grrrrrr…I nearly hung up on her

1310

Sorry you have had a bad day with your Mum. I think she is being totally unreasonable. You have done the right thing coming on here to let off steam. I have a Mum who makes me feel like this at times but she is now in a Nursing Home with dementia now…but she can still get under my skin at times. Then on the other hand I have 2 daughters and I am sure I must drive them mad at times too. Being a Mum is hard. Try to ignore her harsh words…easier said than done I know. Hugs, Val

1311

Dizzycloud - I admire you for returning to work so soon after finishing rads - I finished last week am still exhausted and have been signed for 6 weeks so I will not be fatigued when I go back. The problem is nobody knows unless they have been through it or going through it how it affects the way we are or feel. Easy for me to say but take a deep breath !!!

I think you should hop on the FFS bench !!!

Take care xx

1312

thanks Val and Ermintrude, letting off steam helps tremendously. I have been swearing non stop since I got off phone! lol

Ermintrude, I would have been signed off for another month if I could have afforded to, but my sick pay stopped and ESA at £67 a week would not have paid my bills. As it is I will struggle on reduced hours, and I am not sure I will feel up to working 40 hours a week for some time yet (if at all). I will hop of the FFS bench!

Val - you are right, being a mum is hard. I have a teenager, and at times I have said some harsh things to her (in moments of anger), but I always appologise.

1313

I really don’t know what to feel, it’s all so new to me.
I thought a small lumpectomy, clear lymphs and just a few weeks of radio was cause to celebrate last week.
Today i have to dicide chemo or not as the cancer was grade 3 and eostrogen receptor positive.
I find it really stressful to have to make choises on how ill i am going to be wieghed up against a percentage chance of cancer coming back?
No levels of stress, worry just trying to get through,
Vivibell

1314

Dizzy, you are doing so well to be back. my onc wouldn’t countenance me returning for at least 4 weeks, and i took 6… and it was still too soon! I was lucky, like you, and did a phased return, and that did work. Tell your mum evidence shows that a phased return is more likely to be successful, so it’s good for the employer and the employee… but perhaps you don’t want to mention it again!!! You sit on the FF bench love… every right… I’m just staggering to the k*******d bench… Jane

1315

thanks Jane, I think I will join you in the “k*******d” bench. Just had eleven hours of sleep and am still exhausted. Nearly overdosed on Tamoxifen this morning after picking up my 20mg packet instead of my 10mg supply. Luckily I had only taken one before I realised!. I have now put my 20mg supply away in a drawer to stop me doing this again.
Going to have to grit my teeth in further conversations with my mum. She just doesn’t think sometimes. Its not as if I have been on holiday for nine months. People who havn’t been though it have no idea just what the treatment and having cancer does to you. It didn’t help the conversation last night when my mums first words were “have you filled up your car, petrol stikes are going to happen again” , to which I replied in my exhausted state “I don’t really care”, and then got “well you should do, how are you going to get to work?”. I then went onto say I can’t just bang in £90 worth of fuel just in case, as I am skint. I know my mum cares, she just says the wrong things!

1316

It’s a bit difficult dizzycloud, at least you were on the phone and not face to face!! Just try and keep calm, hard when you feel rotten, good intentions are there but your Mum’s just saying it the wrong way, instead of boosting you it’s bringing you down!Grrrrrrrrrrrrr, just keep ranting away, makes you feel better to get it all out.
I’m on the “ouchy ouch” bench today courtesy of rheumatology, thank you, may pop over to the “softly crying” bench via the “feeling a bit sorry for myself” bench real soon xx

1317

Vivibell.

My sympathies are with you. I was put in exactly the same situation as you and I know it’s a truly terrible place to be. Chemo is bad enough without having to CHOOSE to have it. Your decision is yours alone, and you have to be happy with what you decide. Can you put up with the chemo knowing you didn’t have to have it and the cancer could come back anyway? Could you cope if the cancer came back and you hadn’t “thrown everything at it”? Those are the main questions.

Find all the information you can, talk to friends, family, (anyone who will listen!). I rang my onc BC Nurse and both the BCC helpline and the Macmillan Support line and their people were marvellous - they let me talk at them for ages, offering support and encouragement to find my own answer, and it really helped. One of the things they suggested was to write all your thoughts and arguments down - (I did it as pros and cons lists). Keep going back to it and adding to it or crossing out things you no longer agree with. I found this really helpful.

I am NOT recommending this as a decision for you, but I did decide for ME that chemo wasn’t worth it, as it only improved survival from 80 to 85% (some people may shriek ‘ONLY???’ at that - we’re all different!) I discovered from Onc BC Nurse that most people are either told they’re having chemo or it’s not mentioned at all. The fact that it’s your choice makes you a borderline case. That info helped me to be more confident in saying ‘no’ - before I had thought that most people had to decide.

For me, the thought of going through all that yuckiness knowing it wouldn’t guarantee to stop the cancer coming back just was too much, especially as without chemo I can get back to ‘normal’ sooner and try to put it behind me knowing that if it did come back IT COULD HAVE DONE ANYWAY!

As I say, we all think differently, and you will have to live with your decision, so don’t let anyone persuade you into something you are uncomfortable with. I cried a lot, shouted, swore and went through a hideous few days, in constant one-man debate with myself but then I suddenly felt calm and realised I had made my decision.

When I told the Oncologist, she was absolutely fine with it and did not try to persuade me to change my mind. She did offer me another hormone therapy, Zoladex, to fast track my menopause - which would improve survival statistics by 3% - thus regaining most of that lost by declining chemo!!

Feel free to PM me if you want to talk, but I really don’t want to try to persuade you either way!

Good Luck - I’ll be thinking of you. Hugs.

1318

Goodness me, it sounds like the alligators are snapping a the heels of various Benchlanders, I must dig more pits to trap them.

Best stock up the spoons, hankies and calorie-free ultra-tasty chocolate and cake I think.

Those new to Benchland might want to use Katy’s transmat beam (in the shed) to move around and explore the place a bit. Look out for low-flying Benchlanders bungeeing around and losing the marbles from their pockets. Thankfully the boingy stuff (as per kiddies playgrounds) prevents major injury. Feel free to install new benches or faciltities any time.

1319

Thank you once again RevCat, this seems to be your permanent job in Benchland, no one does it quite like you!!! Be careful with the digging, those poor wrists.
Had a quiet day, visited my Mum, am about to have my grandaughter overnight as daughter not too well at the moment, so am off to the “childhood” bench tonight, reading stories and playing and telling each other secrets, I love it!! xx

1320

Good evening ladies

Not feeling guilty, not wanting a rant

BUT have spent some time today in tears re: no possibility of ‘evening up’ surgery…

Actually yes I do feel guilty - I should be glad I’m still alive and not fussing about being lop-sided, but I WANT TO BE SYMMETRICAL.

Sorry ladies, I do know this is a minor concern cos so many ladies have a worse scenario to cope with and I shouldn’t make a fuss…

I will NOT let this situation influence the rest of my life, 30 years at least, so kicking my ar** into gear and thinking of lop-sidedness as badge of survival.

sorry Ladies - I did need a rant!!!

By the way, Doggies had a lovely coastal walk today, then Barley threw up due to eating rotting seagull - lovely!!!

grumpy
xxx