Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

Batshit hope you have some answers and a little more clarity soon. Totally get the feeling sick.

Also get the it’s so treatable response being upsetting. Your boyfriend may have been trying to comfort you, or himself. Maybe you needed time to say, think and feel ‘This is shit.’ Because it is.

Solidarity and a hug, if you want one. Angrily chuck it away if you don’t.

Thank you @GrannyGoggles , hug gratefully received. I think the 'it's treatable' comments make it sound like you take a course of tablets and you're sorted. Not possibly months of quite aggressive treatment, and surgery. But hey, you're alive! I think he was making himself feel better, but made me feel worse!

@BatshitCrazyWoman abso blooody lutely on that one!

I've told a couple of friends now about mastectomy, chemo, further drugs, etc after the two operations now. One has said "you're on the journey back to health now". I get what she means but want to shout at her that this is not like getting over a cold and sitting in bed with a lemsip and a magazine. The journey back to health is like Frodo's journey to mount doom.

How right you are @dancingwhilstfacingthemusic! I love the Lord of the Rings reference too! I always feel that to friends without experience of cancer the treatments we go through are just words. A neighbour said recently when my mdt team was still considering chemo for me, "Oh maybe it'll be just be a short course of chemo so you won't have to stop working for too long?" I felt like shrieking do you know a short course of chemo lasts 12 weeks? But I don't know her well enough so I just smiled and said hopefully I won't need it.

Thinking of you @BatshitCrazyWoman and know being told things like treatable is hard. I'm an awkward bugger and hard taskmaster as sometimes I like it cos it makes the cancer experience seem solvable to me but other times I f-ing hate it and want to shout you have the treatment then!

Yup. People keep telling me it’ll all be behind me soon. They mean well but it just makes me feel even shitter about the ovarian suppression treatment I’m undergoing and endocrine treatment

I didn't get home from the hospital until 8.15 last night, and I'm not an evening person at all!

I'm still not certain what the exact name of my cancer is, it's ductal, hormone and HER2 positive. I have a CT PET scan on Friday, possibly seeing the oncologist next week, and maybe starting chemo next week too. Also have another appointment with my consultant next week. I've decided to go off sick from work - I wouldn't really want to be doing a 3 hour a day commute and then all this stuff on top. It feels so surreal. I was supposed to be on holiday this week 😔

I'm on my boyfriend/partner's private health insurance, so will be travelling up to the London Bridge Hospital/HCA Shard for appointments and chemo. It's a centre of excellence, apparently. And I can have reflexology during chemo sessions. I told a friend that, and she said oh that sounds lovely, then realised what she'd said and we both burst out laughing!

BatshitCrazyWoman I can really relate to your journey.

I'm going to get my complete pathology this morning.
Actually I feel strangely calm.
As my DD2 just said, what can be worse than being told you have cancer. And she's kind of right.

Anything else must be easier.

As usually I'm expecting the worst and hoping for the best.

We have the major drama of having to park before the appointment and that's always fun!

@BatshitCrazyWoman bloody hell, how did we all end up in this? I hope you feel that you have fewer tabs open on the browser now you’ve made the work decision. I’m closing the last couple of caseloads down and have contacted all bookings with cover I’ve arranged. I feel a sense of space to recover and really can’t think about the other side and work afterwards yet. My job brings too much of an infection risk so it was clearcut to stop.

my breast nurse is phoning today to discuss my choice (between flat and immediate reconstruction). Having had a lovely friend yesterday take her top off to show me her double reconstruction with tattooed nipples, the choice is confirmed. We’ve at least got to give it a go now.

all the best today @drivinmecrazy

@BatshitCrazyWoman That sounds like triple positive IDC - invasive ductal carcinoma. In some ways triple positive is good because that means there are three types of receptors there that they can target with treatment. More receptors, more options. And HER2 treatment has come along in leaps and bounds in the last few years.
And great that you have the option to go private. I have had a bunch of appointments with HCA on Harley Street, and they've been good. All the scheduling is so much easier when you get private treatment. No waiting for NHS letters that get lost in the post!

@drivinmecrazy Fingers crossed for today.

I'm taking a sick day today - which I never do. I've recently started to take Metformin for insulin resistance caused by my cancer treatments, and while I tolerated it okay at first, I've had stomach and digestive issues since the end of last week. Have been awake with a bad tummy ache and diarrhoea all night. I emailed the consultant who's immediately taking me off the meds, but bleurgh... I hate all of this. You take medicine to kill cancer, the medicine causes some other issue, then you take more medicine to manage those effects... It never ends.

How did it go, @drivinmecrazy ? And I hope you managed to park, that's a stress you don't need on top of everything else!

The oncologist I've been referred to is going on holiday (how very dare he!) and the best his secretary could do was a telephone appointment this evening (I don't do evenings!!! But obviously will have to suck it up). I don't see how I can start chemo after just a phone chat with him and he's not back until the end of September. But maybe I can?

Off HRT now, am hoping as I'm 60 that I won't have too many symptoms. Not sleeping that well, even with the magnesium glycinate, and get 6 hours at the most. Such fun!

That sounds shitty, @KentishMama x

What did you decide to do? I also work for the nhs in a stressful job and aim so glad I do. They really can’t touch you. Full pay for the first six months and half pay the next. At that point I went on to Uc and because I rent it more than added to wages so I felt no urgency to go back. Macmillan are very good for advice on this,

im now on my second lot of treatment after been back only six months and my full time wage is stopping in September and Iamexpecting some involvement from work although it hasn’t started yet.

I had a mastectomy yesterday. Feeling surprisingly ok. A bit painful but nothing dreadful. Phew

I hope you continue to heal well and be pain free @Maddy70 .

I have a stupid chemo question. I've got a telephone appointment with the oncologist this evening, and I assume he'll tell me my treatment plan. I've been reading various stuff online about needing to wear 'comfy' clothes for chemo, and I must admit I hadn't even thought about what I'd wear. I'm not a lounge wear/athleisure kind of woman, so I may have to buy something 'comfy' - what do people suggest (my brain is absolute mush, I'm not in a shopping mood at all!).

Easy top so cannula or PICC line can be accessed. Comfortable bottom half, I was happy in jeans. A layer or two, you can get cold, I took a cashmere shawl as a comfort blanket, socks essential. I doubt you need a whole new chemo wardrobe! Also, you may find that you don’t want to wear things again when treatment is over. Some people wear old stuff to chuck. For me it was important to look as good as possible, so always put make up on, and wore ‘good clothes’. One really nice jumper just had to go, it triggered me! It went to Oxfam.

I had a mixed appointment yesterday.
I got the final pathology on my right breast and it was as consultant thought, one of the 'good' ones so the plan is still for just a lumpectomy and radio.

But I had an MRI last week for more information, and suddenly my left breast (which had been described as 'unremarkable' 😂 ) after mammogram , now has two 'areas of concern'.

So I had an ultrasound on the leftie. The radiologist took an age to actually find both areas.
He took a biopsy from one but couldn't get to the other.
So I'm back next Tuesday to find out if it's cancerous, then if it is I have to go to another hospital to have an MRI guided biopsy on the second lump.

So potentially back to square one.

Had this not happened I'd be booked in for surgery on the 25th.

I'm learning that at every step a curve ball is thrown.

As a slightly humorous note, while typing this post I've just got a letter from my GP surgery inviting me for breast screening next week 😂

Oh good Lord @drivinmecrazy it's six steps forward and 7 back sometimes,eh? Glad that one side is straightforward and hoping for good news out of the next update.

I have spent the morning with my consultant and breast nurse, preparing for my reconstruction operation. When we got married, I don't think it was in the terms and conditions for my husband to sit behind a curtain whilst another man photographed and measured my boobs with the plan of helping me to live longer. Operation scheduled for near the end of the month. We have a short break in the UK planned next week, taking my mum, as it's all been a Lot with my dad's death and my cancer.

@Maddy70 I hope you carry on feeling comfortable - mine is mastectomy with reconstruction. I've been sent home with a little bag which my drain will be carried around in.

@GrannyGoggles can you "feel" your pic line when it's in? I bruise badly with blood tests so I guess that pic line is what they'll do for me.

Oh blimey @drivinmecrazy it really is a rollercoaster isn't it.

Thank you @GrannyGoggles - I really don't want to have to buy loads of new clothes which I will probably want to burn when it's all over! I'm going to have a port, so access to that will be needed. And my jeans are comfy! I'll be most likely going there and back on public transport, so I don't want to look scruffy. It's important to me to look as okay as I can, as my self-image is in tatters as it is!

Dancing It took me a week or two to relax around the PICC. I was, irrationally, anxious about dislodging it. It’s almost impossible to do accidentally, and would take a big, self harming, effort to do it deliberately.

You can feel the clip just under the skin, and it can nip a bit if the line is yanked. You quickly learn which oncology nurses you’re pleased to see!

Lots of people struggle to find the cover they prefer; too big, too small, too hot. My preference was cheap and cheery, made from T shirt fabric. They are lots of stupidly expensive ones about

You also need a cover for showering.

Mine ended up being called My Needy Friend. You have to cosset it a bit, but I was extremely grateful towards it. And was v v pleased to say thank you and goodbye. Overall, they are a Good Thing.

I liked buying lounging clothes and still wear them now. No to jeans as I get chemo belly. What people tell you to take half it. I have not once seen people reading, doing puzzles or working. They play on their phones or chat to each other, I’m there three hours every two weeks and it flies but. Take snacks incase they don’t feed you, wear socks for the massage lady and again a maxi skirt or dress so she can access you if you are lucky enough t to have someone one come round. Boiled sweets I use and take my own water. Drink as much as you can. And never, ever wear a jumpsuit!

What is the current advice on cold socks and gloves during chemo? I used them for my dose dense paclitaxel and was pleased to have no neuropathy in my fingers and just minimal in my toes. I bought the kit on Amazon and took it in with spare ice packs in a cool bag. You put them on just before the Pac infusion and leave on for 30 minutes after. For me that was about 2 hours. I couldn’t read or play with my phone wearing them though. The nurses were interested but had no experience of them on the unit.

I didnt use them. Nor did i have any neuropathy fortunately.

@EachandEveryone 😂 I've read some lists of things to take that would require a suitcase! I'm going on the train, I won't be carting all that stuff. I'm a bit of an introvert, so a couple of hours reading, plus the unit I'll be on has entertainment centres and reflexology - sounds fine to me! And I have various friends who have offered to come in for a hour or so. I'll be fine (keep telling yourself that, Bats)

Bats introvert here too.

One smallish tote with book, iPad, a shawl, a snack and hand cream.

Read, listened to podcasts a bit, watched the odd thing on my iPad, v occasionally did a bit of work. Had a breakthrough when a nurse suggested I could have a nap - genius! Odd that I needed permission.

Preferred to be on my own. Time passed quite quickly