Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄

[LemonDrizzle10]

Old thread nearly full!

I've settled for a brew after a couple of Bailey's, while prepping food with the girls, this afternoon. Quite tired now but bought myself the Murdle book this morning so am going to read the "how to" section with Home Alone in the background, while I impatiently wait to put presents out. Dd1 has a jokey one for dd2 hidden under her bed that I need to position too...when dd2 stops visiting down here.

@Enigma52 like @Tilllly I write everything down. I have a designated 'journal of doom' with records of all my appointments, what was said and advised etc.. I would say scour any letters that arrive for any telephone numbers, write them all down - I've got some very useful ones this way, such as the direct booking line for the CT department. I've been medicated with daily beta blockers since when my troubles began as I'm so anxious about everything so I don't cope very well really! They don't stop the thoughts but take the edge off the anxiety. I also feel jealous of those who don't have cancer, then I feel bad thinking that way, but it just seems so unfair.

Hi @Enigma52, I'm so sorry to hear your news! That's just so crap. Is the sarcoma a second primary, and then the metastatic BC was diagnosed in parallel? (I'm currently in hospital after surgery on a chondrosarcoma in a base of my skull. That's my second primary cancer, 3 years after stage 3 breast cancer.)

I also recommend starting a notebook where you write down all your questions, thoughts, any important research, etc. And there's a charity called Sarcoma UK that's very good. Talk to experts when you're ready. Don't rush into treatment - make sure you ask your questions and you have the RIGHT team around you.

@Fantasea yes I've started a notebook with records of what has been said appointments etc.
I can see myself asking the GP for something soon, as my anxiety is spiralling at times!

What beta blockers do you take?

@KentishMama
Well the sarcoma was first thought to be a fibroid. It wasn't until an MRI was performed, that they looked more closely and realised the thing was growing at the speed of light and looked odd. A referral to The Christie in Manchester was made and a hysterectomy was performed quick!

The MRI also picked up the lung fluid, so yes the metastatic bc was diagnosed in parallel.

It's possible I won't need further treatment for the sarcoma as I've had the hysterectomy. The sarcoma histology then picked up the bloody BC in my abdominal wall!!

Second primary cancer, 3 years after stage 3 BC? That's rubbish for you! How did your surgery go?

Christie hospital have recommended anti hormonal and targeted therapy daily drugs, along with 3 monthly scans. I'm dreading it. Bloody sick of it all.

14 years ago, I had primary stage 2. Mastectomy and recon/ tamoxifen.
Now this.

How long will you be in hospital for?

Ah, @Enigma52 , the hospital stay is a bit of a drama. They resected the chondrosarcoma on 5th December and are really happy they got it all. I was expected to go home within a week. But somehow they accidentally poked a tiny 5-6mm hole into my dura during that surgery, so I'm now leaking by cerebro-spinal fluid through my nose. I had a repair surgery on 11th (I think), then went home a few days later... Then it started leaking again, so I came back... Another emergency surgery... And now we're waiting to see if this one will work. We should know by Wednesday.
All in all, three general anaesthetics and two lumbar drain placements and multiple lumbar punctures in just under 3 weeks.
Oh, and a couple of infections.

@KentishMama oh my days! What a distressing few weeks, that's total rubbish!!

So Wednesday they will know whether this latest emergency repair surgery will have worked? I will be rooting for you and hope it has!

How do you feel in yourself? Knackered and fed up I bet 🌺🌸

Thanks @Enigma52 ! Yes, they will start doing some testing and scans to see if the repair worked sometime on Tuesday, and it should be clear within 12-24 hours whether it did or not. If not, I assume I'm back on the emergency surgery list for Wednesday. DH says I need a loyalty card for the operating theatres by now, but I don't think he's all that funny....

I'm feeling achy and fed up. The ward experience is really something else, although I've got to say that this second stay is better than the first (different ward - much better team here).

@KentishMama yes I can imagine you are feeling fed up and achy. When I was on gynae ward a few weeks ago, crikey I was climbing the walls!

Right, well let's keep our fingers and everything else firmly crossed for this week then. Last thing you need is another general anaesthetic. That in itself is draining on the body and mind.

Thinking of you.

@Enigma52 the second link in the first post (roll up roll up..) is stage iv specific but a lot of us in there seem to be deeper into treatment lines and dealing with various side effects. The targeted therapies you'll be starting tend to work well for a lot of women, although being tied to monthly visits and scans gets tiresome after a while. Some days I don't think I can choke down another damn pill for this or that, never mind the cancer itself.

This is truly a mental game so I would advise once you are a bit more situated you find a therapist or support group or whatever floats your boat and works for you to find good ways to cope positively or just someone to speak with about the anger, frustration, sadness, etc.

@HerbalRefreshmentt thanks so much. Yes I don't relish the thought of all these scans and hospital appointments, let alone taking daily pills. Then there's work to contend with and how to approach it all with them.

The resentment is already surfacing, as is the anger and frustration. I will certainly seek some source of support from someone or somewhere.

Thanks again.

@Enigma52 I take Propranolol 10mg 3 times a day every day and am allowed to take a fourth one on days when I'm madder than usual. I don't have any side effects from them, well except for exacerbating my chilblains, so they've been great for me. I take daily oral chemo which is a targeted drug and I find the 4 weekly blood tests and subsequent reviews rather tedious. Those, the scans and oncology appointments have become a normal part of life now and at times I really resent it, other times I can push it away. That plus the side effects of the drugs such as fatigue and permanent constipation do get me down, but then I remember they are keeping me alive. As @HerbalRefreshmentt says it's finding a way of coping which works for you. I've had therapy in the past and found it somewhat useful in parts. I use the Macmillan helpline sometimes when I just need to offload to someone. They can't change anything for me but they will listen.

Hi @Enigma52 after having had breast cancer last year I was diagnosed with another incredibly rare primary (appendiceal cancer ) in June this year which is stage 4 -:spread to colon, ovaries and peritoneum.

I'm currently on round 7 of 8 of CAPOX chemo.

Funnily, I felt more resentment when I had the totally treatable breast cancer. The thing that is getting me through this (apart from my utterly amazing and supportive family and friends) has been not thinking "why me?" etc or going down the "bastard cancer" route but actually thinking " why not me?" and remembering that the cancer isn't something outside that has invaded me but is something that is part of me and my poor body has got confused. Obviously I'd much prefer nut to be feeling ill or facing dying before my boys are properly grown up and I do have wobbly moments but I'm just trying to make the most of every day.

Merry Christmas everyone! Mine's a warm anything ( thank you Oxaliplatin...)

Just set the alarm to fill stockings and transport gifts under tree now I can no longer stay awake later than my children. Cat was delighted I was up! Hope I didn't wake up mother in law...

@Enigma52
Speak to MacMillan and get all your ducks lined up before you speak to work

@TwigTheWonderKid , beautiful cat

Bleh, I woke up at 330 for painkillers and haven't been able to get back to sleep. I just need another hour and a half or so!

@HerbalRefreshmentt
If you can't sleep, you can't sleep
Get off your phone and lie quietly - better than nothing 😙

My cats are wanting me to feed them
They can wait!

Morning all. Merry Christmas.
I usually get woken by the dog wanting to go out but she’s given me a morning off.
I'm going to get DD’s presents out then have a cuppa by fairy lights before she wakes up.

That sounds lovely @LemonDrizzle10

He is indeed very beautiful inside and out, a lovely gentle soul, BUT unlike your excellent cat, he will not wear a Christmas hat, so is a great source of disappointment to his mother!

Buttons only wore it for a minute, about 5 years ago 🤣

Smudge wouldn't even be in the same room as a hat!!

Good morning and merry Christmas everyone. I hope you all manage to have a nice day, whatever that may look like for you, and that cancer takes a back seat for this one day of the year xx

Happy Christmas everyone.
Thanks so much for welcoming me and for the words of advice and sharing of personal experiences.

Today, I will try to block it out..

The teens are flat out asleep... ( probably won't surface until tea time!) So time for a cuppa and a little time with my gorgeous house bunnies ( Mikey and Blitzen) 🙂