Cancer Support Thread #79 Newbies Welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

@AlbertCampion thank you! I haven’t yet taken the dressings off so haven’t seen the extent of the blue dye. I read somewhere that the staining can last for up to a year, though??!

I’m also going to start Tamoxifen soon. Interested to hear how you find it. I’ve definitely put on a little weight thanks to overeating on the steroids and all the languishing in bed, but I was hoping to reign it in in time for the summer... Maybe wishful thinking!

@backformore A year?! Crikey! Well, at least I know it's not abnormal to still be there, then. DH says i look like a smurf! 😂

😂😂😂

Hi @Lizdeflores - I lived in the town you’re describing(I think) as a teenager and went to school there.

I previously asked a question about scan results but forgot to mention that I’m having chemo before surgery. I had my 2nd round of EC nearly 2 weeks ago and had my 2nd MR scan last Monday. Should I expect there to have been any change at all in the tumour size from pre EC to this point?

@Lunificent it's a very wild and windy day today no walks on the pier for me!

@AlbertCampion I did my fish fingers for lunch and at dinner was supposed to have the omelette without the garlic bread - but I did in fact succumb to two pieces. I felt I'd earned it though as I went on my first proper walk since glue-gate - a long walk indeed as we got very lost. I lost a lot of weight on EC but put some back already - very motivated to get a tummy to match my new boobs though.

I'm also anxious about combining work and radiotherapy not least as I have to accommodate a couple of live teaching sessions/week. May end up doing them from the hospital car park!

@TopOfTheCliff all things crossed for your biopsy. Sailing sounds fab though. I actually hardly ever cry but did have proper crying session a couple of weeks ago on the radiology table at the height of glue-gate. Just overwhelmed and had enough. Sometimes you just have to let it out - it can backfire if drs think we're handling things too well. I don't think my drs have any idea what a miserable cow I really am.

@MrsPnut what a royal pain - hope you're back on track asap.

@Babamamananarama really unacceptable! I guess there are reasons but surely it can be handled better than that.

@Bloodybridget how annoying to cancel plans - hope York is good though. I'm hoping to book a couple of short breaks when I finally get my future treatment dates sorted. We need out treats!

Especially glad for my port as follow-up will require 28 accesses (14 bloods, 14 infusions). I see some other newbies have ports - worth it for most of us to have a PICC or port as the cannulas mount up over time and can get more difficult. Pity so few people know how to use them though.

Glue-gate continues but it is improving. Still can't get my arm over my head but hoping I will get there.

All these blokes specialising in breast surgery. I bet there's not a woman anywhere who ever specialised in willy reconstruction.

@Lunificent you could possibly see a big change already but it's very variable. (I responded well to 4 x docetaxel/herceptin but then didn't respond to 3 x EC. But Top, I believe, had a very good response to EC. )

@Acinonyx2 this is the third year running I've missed out on a holiday in Scotland! I'm sorry you're having all the painful issues with glue allergy etc.
Re women dealing with willies, I worked for several years for the British Association of Urological Surgeons, and there was one somewhat terrifying but very funny female member who definitely got up close with penises! She was on the Board so we saw quite a lot of her.

@Bloodybridget I do love Scotland. Where are you hoping to go when possible? I have a mild obsession with getting up to the Faroe Islands some day. I wonder what the ratio of male: female patients is for urology surgery.

Morning, still in the gulag. I have hurt my back from the bed and had less than an hour of sleep. The doctors are on the ward and I am determined to go home today. Wish the doctors luck

@MrsPnut you have to wonder if they make staying in hospital so uncomfortable and sleepless so that they can keep people out. You couldn't design an experience less compatible with well-being!

Oh @MrsPnut that is crap! I'm sure the doctors are just as keen for you to go home as you are (especially if you turn into The Patient from Hell).

@Acinonyx2 this trip was meant to be Glasgow first where we have family, then all of us (DP's sister, younger DD with her DP and their two DCs) to a rented house between Arisaig and Mallaig for a week, then DP, her DSis and me to a borrowed caravan near Tayvallich in Argyll for another week. I think DP will probably skip the caravan part and come home then out of pity for me! I so wanted to see all those beautiful landscapes. Although we've had lots of holidays in Scotland, I've really only seen a tiny bit of the Highlands or any of the country, really.

I've just looked at the Faroes tourist website and how to get there. Don't you think a ferry from Denmark would be amazing?

@Bloodybridget I love the islands but not ferries. I was in a serious boat accident years ago which has somewhat taken the joy out of ferries for me. I've also developed a fear of flying though so the actual getting there will be quite challenging!

It's difficult to see any area properly when you visit family - so you end up having to make a much longer trip to do both without missing anyone out.

Does anyone else have half an eye on the news waiting to hear the report of PNut's successful escape? 😆 {plays music from The Great Escape and Dam busters}

@BadEyeBri I am in Dambuster county! If there is news about an incident near the prison, it may be me. The hospital and prison face each other.

Army called in to quell hospital rebellion led by angry patient wielding Red Devil.

No violence needed, consultant wanted me to stay in. I said I didn’t want to and that I was going home.
I am waiting for oral antibiotics and my discharge letter.

@MrsPnut hope your home soon 👍🏻 Although if your hospital pharmacy is anything like my hospital pharmacy... well... you may be some time

I am home!!!!! The antibiotics came from their stock on the ward so I was out of there. I'm going to bed now.

@MrsPnut I have never understood this about hospital pharmacies! I was told in one of my discharges that I had to increase the dose of blood thinners but would have to wait 6 hours for the medication from the pharmacy! I'm pleased they're letting you home.

@MrsPnut oh yay, great news! Stock on the ward? I didn't know that existed!

@Lunificent I was on FEC-D and saw a reduction in tumour size after the first treatment (it started at 4cm and was pea-sized by the second treatment) but I think it's very variable. At that rate I'd expected it to be gone completely by the time I'd finished my six rounds of chemo, but there was still 6mm left - still pretty good response, but clearly it didn't continue to reduce at the same rate all the way through.

@Acinonyx2 I'm kind of relieved to hear that you've also found few people able to access the port - glad it's not just a Canada thing. It was sold to me as this wonder invention that would be useful for everything, but it turns out that most departments are reluctant to access it for fear of infection and because their nurses aren't trained to, which seems odd - it's so much easier than accessing a vein?! Still, I'm very glad I have it for the year of Herceptin that's following chemo (I make them use it for blood draws, too, which I think is a little unorthodox but dammit, I've been through enough and it's not much to ask!)

@backformore I have bloods from it too. I was having those done at my local practice but after the last failed attempt there switched - but means I have to go into the chemo ward for all my bloods as no-one else can access the port. I've had 2 people miss the port with the needle - the anaesthetist offered to start me off with something in the port before doing the cannula - and he missed it 3 times then gave up! So you really do need someone properly trained to do it.

Can't use it for the scan dye's either unless it's a power port which mine isn't - but even if it were, the staff there aren't trained to use one. Scan people have struggled so now I go upstairs to the vascular access dept, get the cannula done there and go back to the scan people.

If you have trouble with veins as I do it is worth persevering to get it done properly by people who are good at it. My BCN nurse makes the extra chemo/access appts when necessary now. Which reminds me - I'm due a flush and lock

@FizzyOrange it sure does usually take ages to get out of hospital.

@backformore as you also have residual Her+ tumour at surgery - has anyone discussed having trastuzumab emtansine instead of plain Herceptin going forward? It was also approved for use in Canada.

@MrsPnut crikey, hope you've had a sleep. What a nightmare.

@MadamBuxton how are you today?

@Acinonyx2 I don't understand why they can't use PICCs and Ports for scans. I have terrible bruising from the cannula the MRI team put in.

Been for an eye retest so hope they get the prescription right this time.

It's been 2 days since my MRI so don't know how long to leave it to hear from my BC nurse.

Big wave 👋

HC x