Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

@JlL2013 I will do! They said I will have 3 lots of brachy as an outpatient. So that means once a week over 3 weeks I'm assuming. I forgot to ask 🤦🏻‍♀️

@catmomof3 my three were over a week rather than one per week.

@JlL2013 How does that work when they give general anaesthetic? 3 times in one surely wont be good for you.

@KentishMama This is good news right? How are you feeling? 🙂

@Enigma52 It's about as good as it gets. I'm in a Facebook group with other skull base chondrosarcoma peeps, and I seem to have got through surgery better than most (tinnitus, double vision and similar are quite typical side effects - I don't have either). About half of the people there have some degree of residual tumor, and at least mine isn't attached to the brain stem or wrapped around the carotid artery.

I don't like the thought that I'll probably never be cancer free again. That messes with my head. But my surgeon says he's "ecstatic" that everything's looking so good, so I'll take that.

@KentishMama If your surgeon is
"ecstatic" I would definitely take that as a large win! Having no side effects is even better.

I think so too. I just wish he could have got that tiny extra bit of tumour, but apparently it was too far down to reach endoscopically...

Fantastic news Kentish

well my eye op has been cancelled for the second week running. So frustrating I hate messing work about.

im having weird skin itches it’s driving me mad it’s in patches and feels like I’ve been prodded by a hot poker. One is a tiny area on my wrist and the other is a much bigger area just under where the cancer is at the top of my leg, could it be the radio therapy? I am seeing my oncologist on Wednesday with my scan results. The cancer feels sore now. I keep thinking it’s only been 8 weeks since I saw him so I’m hoping nothing dramatic has happened since then.

@KentishMama yes, I can understand that. Be reassured that absolute best for you and he's happy.

@catmomof3 I didn't have a general anaesthetic. They did an epidural and sedation. Was in the hospital for seven hours but probably slept for 5 of them. The whole thing sounds brutal but it really is pain free. And you get all the good drugs!

When I was doing the daily radiotherapy there was a therapist who I saw once a week, she was affiliated with the department and used to be a radiologist, she talked through the procedure and processes. She was also there during the procedures which really helped. I don't know if it's the same everywhere but it might be worth asking

@JlL2013 Oh god I don't know if I can be awake when they insert the rods. I think nearer the time I will speak to my oncologist about it.

@catmomof3 I was completely out of it on sedation, don't remember a thing about that part, so it may as well been a general, do talk it all through with them though, they might be able to offer inpatient under general.

Well done @catmomof3 and good wishes for your treatment.

@KentishMama that is great news!

I did an online yoga for cancer class today and feel a lot better for it. The Maggies centre told me about it, it's done by TriYoga. I used to be a regular at TriYoga when I lived in London. Don't think I could face an in person class but the online was good.

Keep on keeping on everyone 💜

@catmomof3 Very best of luck with all your treatment going forward.

@HellonHeels Keep on keeping on. I like this! 🌺

Feeling good today. Probably because I've been enjoying a 3 week ribociclib break. Can't believe how much additional energy I have. Back on it Monday 😫 Hopefully at 400 and not the dreaded 600 dose!

I was told because my immune system will be so low to not get any takeaways due to not knowing what the person preparing the food might have, anyone else been told this?

@catmomof3
To be honest, you probably won't want a takeaway as you'll only want simple foods that don't upset your stomach. I lived on oatie puffs, apples, plain chicken and steamed fish for two weeks out of three during chemo. Your immune system will be taking a battering so invest in a box of disposable masks. I think that you have children? If so then it's wise to mask up at home too so that you don't catch any of those illnesses that kids bring home from school and make sure that any visitors (if you're up to having any) wear a mask too. A relative of DP's insisted upon visiting me during chemo and refused a mask. They got really offended when I sat on the opposite side of the room next to an open window and wouldn't hug them. So if you don't want visitors then say no or tell them to facetime!

I've been and saw a GP this morning. She is ordering tests as very concerned about my upper stomach and rib pain. After having a good feel around she's referring me for a comprehensive blood test including ovarian cancer markers, autoimmune conditions and other stuff. This is fabulous as I've only been asking for two years now. Sadly I have to come off all my joint pain meds for two weeks until stool and blood tests are done so I'm going to be in agony for at least two weeks and then build up the meds again after the tests are done. I can at least take paracetamol but it going to be a long painful few weeks as I can't take codeine. I've also been asked to find out if there's a history of female cancers on my mother's side. I haven't spoken to her for 35 years so that's going to be tricky. I'm going to have to ask my brother, who's still in contact with her, to make quiet enquiries if he can but it's going to raise suspicions as he didn't tell her that I had cancer last time. Hmm...a can of worms that we don't want to open really.

@catmomof3 I think you've just got to do your own risk assessment there. I was of the thought that I'd probably pick up more at the hospital than anywhere else.

As @MothralovesGojira says you might have a reduced appetite anyway.

@MothralovesGojira @JlL2013 I probably won't want to eat much you are right, just thought it was an odd request because that means I wouldn't be able to even go to a coffee shop etc.

I had my GFR this morning and at my last blood test the poor nurse had to keep flushing my vein as the blood would just not flow into the tube. I drank so much water today as well so not really sure what is going on esp I have never had an issues giving blood before but that's two days in a row that arm hasn't co-operated.

Now I await my start date.

@catmomof3 yep it's a bit of a weird one. I think you've got to make your own judgement call. Mental health comes into it as well which I found they were not particularly interested in.

Personally I went to work in the office and went out to meet friends when I felt able to as that kept me sane. Sitting waiting for radiotherapy for two hours in hospital as my bladder wouldn't play ball or they were a machine down to me was equally risky. I tested for Covid regularly as that was a thing then.

@MothralovesGojira glad you've finally got them to take an interest and follow up.

If you don't have/cant get the family info, can they do dna resting?

@Enigma52 there's a Churchill experession of similar type - Keep Buggering On (KBO) if you fancy something with an historical provenance.

Went to walk in breast clinic today, the nurse enjoyed draining 400mls of fluid from my armpit. The relief is immense.

@catmomof3 the advice they give about diet to chemo patients is similar to that given to pregnant mums. No reheating cook chill food, or pate or blue cheese or raw eggs. It is meant to be safer if you are neutropenic but the truth is there is little evidence that cancer patients get infections from food. Most sepsis comes from skin germs. If you have a regular takeaway that you trust and the food is piping hot then it’s very low risk. I ate far too much all the way through chemotherapy unfortunately. I would be at deaths door if I lost my appetite I think!
The advice about avoiding close contacts is for viruses, and seems very sensible. I quite enjoyed being a hermit during chemotherapy.

@HellonHeels that is great! Hope it doesn’t come back too soon.

@HellonHeels
Churchill also said ‘If you’re going through hell, keep going!!!!’
Wise words!

My consultant rang this afternoon; despite having two biopsy samples taken from my thyroid, there is still not enough of me chopped out to tell what’s going on, I’ve got to go for another biopsy. Breathe in, breathe out!

@TopOfTheCliff That's interesting to know, and something I hadn't even thought of. Tbh the whole stay away from takeaway's was mentioned when I was told I can't clean my cats litter boxes. I was wondering if I wear a mask and some gloves maybe I can scoop the poop as if my daughter is at school I cannot sit in my house inhaling the stench of cat poop lol.