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.

Ah, they're a divine little chain of country house hotels: https://www.thepighotel.com/. All a lot further south than you are, but maybe you fancy a little trip to... say, Bath?

I'm so ready to start treatment now but I have no idea after the MDT on Friday how much longer I have to wait. Even though my nurse will call me to tell me what happened do I still have to wait for an appointment from my gynaecologist to talk it through before I get assigned an oncologist? They say things are moving fast behind the scenes but it doesn't feel like it.

I've deffo come to terms with the situation at hand, still dreading staging but it is what it is and all I can do fight it for myself, my daughter and my cats.

Hope everyone else is doing as well as they can be 💜

Hey @catmomof3 chances are you’ll just see your oncologist now and you should get treatment starting soon. Again it all depends on what they decide to do whether chemo, radiotherapy, surgery etc. They might want to send you for a PET scan first. I know you just want to get started though!

Oh so I won't see the gynaecologist again? Do you think my nurse will know who will be taking over my care when she calls me on Friday? I'd like to look them up before I meet them if possible (autism thing).

Also someone who knows someone who has chemo at the same place I'll be having mine told her the room is so small you can't have someone sit with you, I was hoping my mum would be able to sit with me for a bit while I get settled so if this is true bit bummed about that as she is usually my voice if I go non verbal. 🤔

@catmomof3 If you need chemo, then take your mum along to the prep meeting you'll be invited to. She can then explain that you need to have her there to manage communication with the team. It's a reasonable request, as an accommodation for your autism. They'll be able to find a larger room or squeeze a chair in the corner if that's necessary.

@KentishMama Yes I will do that, she plans to attend every meeting anyway and even though I told her doesn't need to stay for the whole of chemo she wants to make sure I'm all settled before leaving me for a few hours. I only go non verbal when I'm extremely stressed and overwhelmed but once I'm into the routine and know what happens I think she'll be fine to leave me.

@catmomof3 you will probably have a meeting with the oncologist to explain the treatment and get your written consent. Then quite likely you will have a meeting with a chemo unit nurse to explain some more in terms of effects and side effects and arrange a PICC line if you are having one. If there is radiotherapy the same process happens with that too. They take it step by step but it all goes quite quickly once they have a plan. Hang on to all the leaflets they give you as they are very useful to look back on after you get home (and can’t remember anything they said!)

@TopOfTheCliff I'm not having a picc unless my veins in my arm fail me. The thought of a picc actually kept me awake all last night as I kept having visions of a nurse trying to stick a needle in my hand 😅😭

Im so annoyed both my ankles have blown up and they were the only dainty things I had left🙁 i wonder if its my bp drugs? Ireally hope they go down.

I've received PIP!!

Form requested 21/02
Form completed 18/03
Form posted 20/03

PIP benefit in bank 04/04
Letter received Today to confirm
It's legit!! 🙂

Gosh I'm shocked!

&enigma - good! Do you have someone who can apply for carers allowance too? I’ve never ever had any benefits and it did feel wrong but I’m using them to keep my heating on, have a cleaner in for an hour, getting lymphoedema massages £60 a pop. That’s what it’s there for.
@catmomof3 i was terrified too but a picc line is blooming amazing- given you don’t like needles you may want to reconsider but you can do this at a later date if you want to. What time is your appointment on Friday?

I had a portacath (port) rather than picc line, and it was a-ma-zing. When I was in hospital for the whole surgery/complications/sepsis debacle, we ran out of veins within a week or so because they were pumping me to of an antibiotic that is really harsh on the veins - and I kept thinking how easy it would have been if I'd still had my port!

Totally unrelated to cancer, but I've just found out that evil-bitch-boss-from-hell has been fired, and my team and I are moving to an absolutely lovely manager. And I'm so happy! Not happy that she's experienced a firing, but just so happy I'll get to work with nice people!!!

@Enigma52 I'm so happy that it's the actual Pip! Fantastic! There is an important rule for unexpected money: You have to buy yourself something nice and unnecessary first, before you spend the rest on everyday stuff. A treat! Even if it's just a nice ice-cream or a magazine you've been wanting to read.

@Whatevershallidowithmylife well my partner could be my carer ( maybe?)
The last time I claimed any benefits, was during my primary diagnosis and was too poorly from chemo to even
apply for jobs, let alone work a job. DS was only 2 at the time.
I've been having reflexology at the local hospice, but will now use some of PIP for acupuncture and massage etc for cancer induced anxiety.

Speaking of PICC lines, I think I need one too. Veins on both arms are done for!

@catmomof3 things will be moving quick now, hang on tight. It may seem dreadfully slow and feel as though no one is doing anything, but they will be. Having your mum must be a great comfort? Keep us posted.

Oh @KentishMama I was so excited! Tried jumping up and down with excitement, but poorly lung was having none of it ( spoil sport!!) No issues buying something unnecessary at all! 😋🍫🍦

@KentishMama Great job news! Working with nice people is such a bonus these days.
Evil-bitch-boss, is not worthy of working with nice hardworking people. Good riddance!

@Whatevershallidowithmylife I don't have an appointment, the MDT is Friday and my nurse is gonna call me to tell me what was discussed and confirm it's cancer they found.

Hi all Ive got a decision to make over treatment to my lymph nodes and I am stuck.

I can either have full axillary clearance or radiotherapy. I was going to choose radio, until I found out that the risk of lymphoedema was only slightly less than for the surgery. How do I choose?

I still have to have radio on the breast after WLE

Sending keep on keeping on vibes to everyone on this thread.

If it's any help I was just told to have full clearance. Healed really quickly, I have some numbness under my arm but full movement. It's been absolutely fine and it was a relief to have them out (all of mine tested positive for cancer). Good luck.

@HellonHeels I chose to go for surgery thinking I could have chemo or radiotherapy as a back up but due to circumstances surgery didn’t happen. I would still have chosen surgery.

Hi all, just popping on to say I've had a good result following surgery - a pathological complete response and lymph node biopsies were clear. I'm very relieved I don't need any more chemo and will just stay on phesgo.

@HellonHeels best of luck with your surgery.

@catmomof3 I hope Friday goes as well as it can. I had a port as well and it has been very easy to use and spared my (apparently rubbish) veins repeated attempts at access.

@Enigma52
Yay! I'm so pleased for you. Please spend some of your arrears on something just for you - I bought a lovely handbag with mine.....and then another one 😏

@catmomof3
What scares you about having a picc line?
A lot of chemo can't be put in through the inside elbow and these are the veins that you want to keep healthy if you can. A picc actually helps to reduce vein collapse and is (as far as my experience goes) painless. When I had mine put in it took about an hour and didn't hurt at all and didn't cause any pain while it was in. I had all my chemo and blood tests done through it and all scans requiring contrast dyes etc were put through it too. I found that it made everything less traumatic for me.
Yes, you do have tubing in your body but you can't feel it.
Yes, it can be a bit inconvenient because it has to be checked & flushed weekly and you can't swim/bathe/shower without a cover on it
But...it did make my experience much better.

In other news - I went back to work yesterday which was an adventure. Our computers went down so I couldn't have my return to work interview or discuss a work plan. Then we had to call the police due to a very awkward 'customer' and then the till broke. Luckily we're all post-meno ladies with huge fuck-it buckets but I felt like I'd slugged it out on a battlefield all day when I finally dragged my weary carcass on to the bus at 5.30pm! This morning my joints ache but I'm ok so it's a win I guess.

Yay! 🥳

Well, she hasn't been fired without calls has she? She's had opportunities and not taking advantage of them so don't feel bad about it. I'm really glad that you've got a positive work environment to go back to