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.

Hello everyone - I'm another Stage 3, Grade 3 BC. Diagnosed in summer 2022 when I was 49. Hormone positive, but not strongly, which gives a worse prognosis and I had 4 positive lymph nodes which for some reason is classified as Very Much Worse than 3. I had the usual treatment triathlon, finished May 2023, and am now 6 months into abemaciclib which has not been as bad as I feared.

I have two teenage DDs who were just going into years 11 and 13 when I was diagnosed, which was very hard for them, but they both did amazingly well in their exams and the elder one is now away at uni. I am freelance and worked a little bit throughout treatment and am now trying to find a good work-life balance which enables me to feel challenged but have enough time for myself.

Mentally, I've found it tough especially as I stupidly delayed going to the Dr about my lump in the first place as I was dealing with a lot of difficult elderly relative stuff at the time, and my DH had just been diagnosed with young onset Parkinson's and I thought we couldn't be due any more bad luck. But onwards and upwards. I'm mainly trying to post on the Recovery thread now, but this thread was a massive, massive help to me at some very dark times. Sending strength to all.

Hi everyone,

I’m 53, 1Dd(14). Diagnosed with BC (hormone positive, HER2 negative) Aug23. Just coming to the end of 6 months of chemotherapy (EC followed by paclitaxol).
Mastectomy plus immediate DIEP reconstruction planned for the end of March. We had hoped the chemo would shrink the tumour enough for a lumpectomy but although I have responded well, it’s not enough to give a good aesthetic result (read I will look deformed) so I’m following the surgeon's advice and have made my peace with it. Hopefully I’ll avoid radiotherapy but will be having a sentinel lymph node biopsy a week before the main op to check.

Thanks for the new thread. Sad to see so many new folks, I don’t think we realise how many people do get to share our experiences until you’re one of them (like so many things in life).

Afternoon all! I'm back with a brief intro and a moan, while I'm making phone calls & landing in stupidly long queues (25 in one of them 🙄).

Anyway, I'm 42, metastatic bc (ER positive, HER2 positive). Treatment so far, 18 weeks paclitaxel, followed by Abemaciclib, Letrozole, Goserellin, and eventually Denosumab once my wonky tooth comes out tomorrow.

I have 2 girls - 14 choosing GCSE options, and 17 looking at uni choices!

I'm currently trying to contact Unison after I was refused the time off I requested after my tooth out - reason being I've had time for dental treatment already 🤔 bit shoddy when they know I need it done so I can have the bc medication. Shoddy for my colleagues too who won't have the classroom support for my 1:1 or the new little boy who seems to need extra support but not quite a 1:1. The info given about tooth extraction even states you're likely to need a couple of days off - I asked for one. Not happy - shall ring in sick instead.

& trying to move an ECG to my local hospital at a time that doesn't mean me walking in at 7pm after a full day at work then appointment, I was knackered after doing that last week!

@lucysmam really hope you got got somewhere with unison? I'm with them too! I'm guessing you work in a school? I'm a TA in an SEN school.

Did school refuse time off for tooth extraction? That's mean! Definitely ring in sick.

That reminds me, ECG. I've not got one booked and new cycle starts today.

Also fed up. Rang the Christie hotline, due to my increased breathlessness and coughing. I'm on a list, but can't set off until they've called me! I'm fed up and tired of all this bull shit.

@Enigma52yep, they've refused a single day afterwards! I did get a helpful response from Unison though! He said take the day I'd asked for but expect them to be dicks about it because they'd refused it - then they'll step in & put them back in their box. I might take 2 days now instead of just the one. I'd understand if I took random days all the time, but I'm rarely off if I don't need to be 🤷‍♀️

I'm a 1:1 for a little boy with autism - he lashes out quite often. Hence requesting a day to get myself together.

@lucysmam sounds as though they are definitely being dicks, particularly as you don't take time off randomly. It's not much of an ask really.

I used to be a 1:1 for a little girl with autism ( well she's a teen now!)

Still no word from Christie ( sigh) and I'm an hour drive away too!

No, I didn't think it was. Apparently it is...

Oh look - there goes me booking appointments around school hours so it doesn't put anyone out...everybody wave goodbye 👋🤷‍♀️ I'll just start taking the stupid appointments in the middle of the day that'll make it impossible to go in at all.

Will you drive yourself @Enigma52 ?

Do you have lobular breast cancer?

@lucysmam yep start making life tricky, if they are going to be twats about it! It's not like you asked for any of this shit.

Christie phoned. No room at the inn tonight, plus they don't drain at night.

Got to be there at 10am tomorrow. Luckily my partner is about to drive, which is just as well because don't trust myself to have a wee without coughing for England!!

@Pacifybull lobular BC? No I don't. I have SBC in my lung.

P.s How does one go about editing posts on here? I can't see an edit function. Thanks.

@Enigma52 the Edit button is present for a short time after you post but then it disappears. You have to act quickly if you spot a mistake. Click on the three little dots top right of your post …

@TopOfTheCliff Thanks very much ....

Yes, I understand that. I thought you must have lobular breast cancer because the places you named it has spread to are typical of lobular breast cancer, and rare otherwise. I wish you well.

Does anyone know or have any experience with the new Picc port?

I had a Picc line fitted a month ago but 12+ cm of line has already come out. They had no securacath when had it placed!!! Unbelievable......

So the plan was I had another Picc line put in place the morning of my next chemo. This morning someone rang and offered me a Picc port instead.

I'm not sure what to do for the best.

@lucysmam your employers are, to put it bluntly, shits! Really shocked at how unkind they've been.

Totally agree!
@lucysmam is being considerate around appointments and they are being arses!

@lucysmam well as you said, definitely accept medical appointments during the school day from now on. Your MRI at that far away hospital needs a whole day I'm sure what with the journey, for example. No more putting so much effort into changing them so you can stay at school the whole time working for those ungrateful mean people.

I can't even imagine they are acting legally considering cancer gives us protection under the Equality Act 2010. Good for you contacting your union and I like the union's response. Put them back in their box YES!

So sorry the school are behaving that way, you deserve so much better - such an amazingly dedicated TA who's also a genius at craft work.

welcome to the new people on this thread xxx

@tothelefttotheleft a PICC line is a peripherally inserted central catheter so goes in through the upper arm and threads into the vena cava. The end is taped to the skin and it needs flushing weekly. It needs covering with a waterproof layer to shower and you can’t swim or bath with it.
A portacath is similar but is a tube attached to a metal disc with a rubber top sited on the chest wall below the collar bone and under the skin. To use it the nurse clamps a needle with a round casing onto the metal disc. It can be used to take blood or give infusions. It is fitted by the radiologists under local anaesthetic and only needs flushing once a month or so. With the port you can swim, go to the gym or shower. I have had both and the port was much less trouble. I used to put anaesthetic cream onto it before each chemo session so it didnt hurt.
I haven’t heard of any newer devices but I may be out of date.

I cannot for the life of me find anything other than the sickness absence policy, which I don't think this falls under.

It's occurred to me this morning as well that they have approved time off for 2 staff who are having ongoing investigations several times, so why not for ongoing treatment recovery?

I'm starting to feel like they want rid...I'll just dig my heels in & make it public which employer refuses the cancer patient recovery time 🤷‍♀️

@lucysmam does your employer have a Disability Policy? That's a good place to look.

Have you had any contact with the Macmillan employment advisers? Wondering if they might be helpful, Ive no experience of using them but others might.

I'm also wondering if your employers are not meeting their obligations under EA2010, as SummerCycling mentioned.

Put yourself first.

@tothelefttotheleft I have a portacath (also known as a TIVAD I think). It took about 45 minutes for it to be fitted under local anaesthetic. It was a bit sore for a few days afterwards but nothing terrible and I was able to carry on as normal, albeit with a slightly limited range of neck motion. Now that it's healed I barely notice it, can move my neck fine etc. It has been used for all of my treatments and blood tests etc. The first few times it was used it was slightly painful as the needle was put in (for a second or so) and I was told this was because the tissues were still healing. Since then it has been fine and I sometimes don't feel it being accessed at all.

@Enigma52 I hope it goes well today and you are feeling more comfortable soon. I'm a fellow Christie patient (and very familiar with the hotline).

@lucysmam sorry to hear your work are being so unreasonable. I hope all goes smoothly with your tooth.

@SummerCycling we were talking about side effects on the previous thread. I've had the severe and at times uncontrollable diarrhoea on chemo, and also indigestion, acid reflux and nausea. I have medication for all of it now, though still have problems at times. I was hoping phesgo alone may be a bit better - first one is next week so will see.

@TopOfTheCliff why aren’t you allowed to have a bath with a picc line? I’ve got one of the waterproof arm things - do you just mean not to submerge it?

Ok, can't find a Disability policy. Can find a Capability policy but again, doesn't seem to cover this, more what the content of a capability meeting should include.

My colleague said ask for the employee with cancer policy...

I'm just waiting for Dad's Taxi to the dental hospital...he's usually early to the extreme but apparently not today 🙄

How are you today @Enigma52 ?