Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

New thread

@CoachBeardsJane thank you very much for replying, having such detailed info does help me feel slightly better about it. Really appreciate you taking the time to explain. I definitely won’t be a martyr, I have had surgeries before and tried to avoid too main painkillers but won’t be for this one. I’m sorry you struggled so much with the morphine, I don’t think I have had it before so not sure whether I will have a bad reaction I guess. It must be really difficult being a patient when you are used to being on the other side of it and making the decisions.

@Remaker not at all, I think I am already in a bit of a state about it but haven’t heard about post surgery blues. I want to know what to expect when I am there so it’s really helpful to hear other people’s experiences. Thank you for sharing yours. I’m glad to hear you don’t remember anything as I am nervous about the spinal block - when I had my c sections they really struggled to get the needle in and I think I will already be in such a panic that if I am being messed with for ages I might be sent over the edge! My older son will be off school but the younger one is only one and slightly feral so I can imagine him tearing around the ward and ripping cannulas out etc which is another reason I think it’s best to stick with FaceTime…I guess I might change my mind when I am there as I will miss them terribly but I really think hospitals are no place for children and I don’t want them to see me struggling.

@Brunonononooo I found the staff in theatres were some of the nicest people I have met during treatment.Before surgery I was trying very hard to hold it together and when I reached theatre I fell apart. I was immediately surrounded by hugely empathetic staff who offered a listening ear. As soon as I was cannulated the anethetist gave me a 'sip' of the anaesthetic to help me relax.It worked and I was soon rabbiting on about lego!
PCAs are great but when thats removed don't be afraid to be very assertive in insisting they keep on top of your pain. It wasn't my experience but reading this thread and other health threads you do sometimes need to be a strong advocate for yourself.
I made the same decision as you regarding my son coming into hospital however I was only in for 4 days maybe as your mobility improves there will be somewhere away from the ward you could see them.
I expected the worst from my surgery but it wasn't like that at all and hopefully your experience will be better than your expecting x

Ive been awarded my PIP it only took a couple of weeks!

@Lisdeflores thank you for sharing your experience too. I am very nervous about that too, being dropped off at 7am by myself I think I will be hysterical but really want to try and hold it together so my husband isn’t even more worried than he already is. Will just think of the lovely people I will hopefully see inside!

OK I will try to be strong I think and ensure I ask for what I need. Everything is getting on top of me a bit and I have relied on my husband to do all my asking so far but he won’t be there in the hospital as visiting hours are still quite restricted since covid so I need to try and put my big girl pants on (and they will be very very big post APR surgery I am sure!!!)

Really appreciate everyone sharing experiences, it helps me feel so much more prepared for what is to come.

@FairyWren7 is it an inferior vena cava filter you are having fitted? I had one before my surgery and am happy to answer any questions you may have.

@Brunonononooo

@Brunonononooo maybe you can defer the decision about your children to when you're there, it doesn't have to be one you make in advance. See how you get on and if you have a good day yet could come and say hi. Can your DH take them anywhere near to the hospital (like a park or something) so they can go there beforehand and burn off some energy, then come for a quick sit down and snack with you and tell you about it? You could pack some treats in your hospital bag so you have something to give them if they come and visit. And if they don't then you get to eat it 😉

Or if you think it's best not (and my DS was like that at 1yo and still kind of is at 7, so I totally get it 😁) is there anything fun you can set up beforehand with your older DC? Like a present- sticker book or something - that they can open while they're FaceTiming you? Often children don't know what to say on FT so it's good if you have something to give it a bit of structure. Or if they're old enough, a game that you can play remotely like Batteships, or get them to read to you.

Obviously none of this is vital and I'm sure you'll be fine when it comes to it but it might help if there is something concrete you can do in advance to make you feel like you have A Plan (that's how my mind always works anyway 🙂)

@LemonDrizzle10 love that! Just need to try and remember it!

@AllotmentTime thank you for those ideas I hadn’t really thought about it at all but those are such good suggestions. I will get him something to do with Ninjago which is his current obsession. You’re right he doesn’t really understand FaceTime very well as he is only five and the one year old will just run around saying ‘cheese’ which will at least cheer me up! I may feel differently about them visiting when I am there and I know I will miss them so much, two weeks seems such a long time without them. I keep crying when I think about it actually, that part is upsetting me more than the pain post surgery as then my mind goes down the path of them never seeing me again if I don’t manage to beat this stupid blood cancer. It’s a wild ride and I haven’t even had any treatment yet!

Sorry typo…stupid BLOODY cancer.

This thread moves on so quickly! Sorry to those new to the thread but there is a wealth of information here.

@bringonyourwreckingball @CoachBeardsJane and @Scandimandy I hope you’re all managing with the pain and getting stronger day by day. Fingers crossed about the nipple construction and that it hasn’t failed.

@EachandEveryone thats great news about your PIP claim. And so quick! I put my firm in last week but I’m not holding my breath…my pay goes to half pay this month which is going to be pretty tough.

I’ve got my surgery coming up in August. I had thought it would be 4 weeks from my last chemo but it’s actually more like 6 and half weeks which makes me nervous. Am I being ridiculous thinking the tumour might start to grow again? I do have a Phesgo in between…and I suppose it gives me 2 weeks of normality in the summer holidays for the children. What are other people’s experience of the timeline from chemo to surgery?

@TopOfTheCliff I know it probably feel like it for you but I can’t believe you’re already half way through your cape…it’s flown by! I remember you starting it with a ridiculous amount of pills to take!

Form! Stupid predictive text!

@Brunonononooo 5 and 1 are hard ages to FT with, it's rough. My DM used to read to DS over FT (he turned 5 during covid) she would have the book and have the iPad pointed at it, so he could see the book and hear her voice. That worked, kind of 😂 maybe you could do him a bedtime story.

Remember you can always come and get a virtual hug in here as well ☺️ the brilliance of the Internet is there's always someone around to talk to!

https://www.gov.uk/government/news/major-agreement-to-deliver-new-cancer-vaccine-trials

This is the amazing trial my DD has just joined as a research registrar. I am so proud of her!

Today she is going to meet Sir Chris Whitby and Prof Ugur Sahir at the Palace of Westminster. How cool is that? Proud mum!

@TopOfTheCliff wow I am not surprised you are proud! What an amazing thing for your daughter to be working on.

@AllotmentTime yes I might try and read to him if I feel OK to. Really hope I will after the initial few days. You are right, mumsnet can be so brilliant for support at all hours of the day or night. I used it so much when I was up with my babies feeding them and this definitely isn’t special like those times were…but it will be useful to know someone somewhere will be awake.

@TopOfTheCliff that’s definitely a proud Mum moment!
Hooray for the clever scientists!
So many people I know have raised money for Cancer Research this year. Everyone knows at least one person who’s affected.
Hope mini-Top has an amazing day.

@Whattodotomorrow it’s good to have a break before surgery. The Phesgo will keep the cancer at bay while you get a bit fitter and stronger before the operation. I find any time there is a pause between onslaughts I start to feel better and remember what life can be like. Great that it’s summer holidays too so you can do some fun things with the DC.
Thanks for the nice comments about DD folks. She is a star!

@TopOfTheCliff She is a star - and it must be immensely satisfying for her to work on cancer vaccines when she knows how it's affected you.

Hope everyone is having a good day - trying to kick those negative thoughts and discomfort into touch.

@FairyWren7 I know what you mean about wanting to minimise risk of recurrence. I am at a stage where I just want them to 'throw the book' at it and get rid of it. I am somewhat less concerned about the aesthetic appearance. I think I might eventually get more obsessive about what it looks like. I would take that as a good sign though. If the main concern is what it looks like, it means the medical worries have faded. Fingers crossed we will all get there.
The dressings were all removed at my first appointment post surgery, so about 10 days post surgery. The scars look tolerable, apart from the one under my arm which continues to cause me issues, but I am seeing a physiotherapist about that next week.
The drains were removed before I left hospital, so on day 5. I was a bit concerned about that, as there seemed to still be quite a lot of liquid draining. The result seems to have been just a somewhat bloated abdomen and breast/armpit area since then, but nothing requiring the re-insertion of drains.
As to removing nodes from the non-cancer side, that is odd. Do they have any reason to think there was anything suspicious on your left side? They didn't do that with me, but I wonder whether they have been over-relaxed about my other breast. I was going to opt for a double mastectomy and reconstruction, but I did not have enough belly fat for two boobs, so they said it was fine to do just the right side for now and just monitor the left side and decide what to do about the left breast in a year or so. Not sure what to make of that.

@Whattodotomorrow I know how you feel about wondering whether the cancer will start up again while you wait for the next treatment. I am in the reverse situation to you. I have had surgery almost three weeks ago, seeing the oncologist to discuss chemotherapy for the first time tomorrow and am already getting quite concerned about the wait between surgery and chemotherapy. Feels like surgery will have all been for nothing if they don't get a move on with the chemotherapy. It is nice of course to have some time to recover, but not if you keep interpreting every niggle and moment of feeling unwell as a bad sign. It is strange to be looking forward to chemotherapy starting. I am both dreading it and wanting it to begin and be harsh (ie. effective).
@TopOfTheCliff congrats to your DD! We need more trials like this. Vaccines will hopefully be the answer in future, avoiding the need for all of this suffering.

I did not have enough belly fat for two boobs

I can donate some to you!!!

I was rather disappointed that they didn't remove more than they needed when they did some 'lipo work' to give me a softer breast!

Wow you must be a super, super proud mum Top! And the initiative sounds amazing…I want to sign up for it! Fingers crossed the next steps are discovered soon. X

@isaxx I agree with you about wanting the strongest chemotherapy to see off the cancer so have soldiered through mine twice (FEC-THP and EC-T) without any reductions in dose. The IV chemo is brutal but effective. I hope you get a treatment plan soon. You will probably be asked to sign the consent form tomorrow then get a session with the chemo nurse to explain everything then perhaps a PICC line and a start date. I had my port fitted then trotted round to the chemo unit and started treatment the same day. It took about a fortnight from seeing the consultant to starting treatment both times.
It does seem with my current treatment that getting side effects is associated with a better outcome which is encouraging when my feet and hands are sore and I can barely get off the bed. My tasks for today are doing the recycling and sorting out yesterday’s laundry. My reward is a drink with friends later tonight. I’m learning to accept small gains.

Very stuck in my own head today. Meant to be prepping for a trip at the weekend, and I'm doing the tasks, but my head isn't in it.

I received a copy of the letter that the gynaecologist sent to the gp so I've been googling but in my defence it's cos I don't understand lots of the words! My O-RADS score is 4, which wasn't mentioned in the appointment. Google tells me that means there's a 10-50% chance my tumour is malignant. The difference in those numbers is huge!