We're not that old but we're losing our hair... Do you still need us, now we're sixty four?! - CANCER SUPPORT THREAD 64

[WhatWouldLeslieKnopeDo]

Me again. Even attempted a vaguely witty title. Hopefully not in poor taste

If you have cancer, or you're waiting for test results to see if you do, then please pull up a chair and introduce yourself!

Some of us have been here for ages and others are just going through the testing process now, so there's bound to be someone who understands what you are going through.

Whether you are a newbie or an oldie it can be helpful to post a quick recap of your diagnosis/treatment to date just so that other posters can keep track without having to search previous threads :)

If you have a relative who have cancer then there is a thread just for you in the Life limiting illness topic, with lots of others who are sadly in a similar boat and able to support each other. Other threads in that topic might also be of interest. We wish you and your loved one all the best

Below are some links that might be useful. But feel free to ask any questions at all. Nothing is off limits here.

Cancer patients are eligible for a medical exemption card for prescription charges - there is some information on the NHS Business Authority website or you should be able to get the form from your pharmacy or GP surgery

You can find information about the individual chemo drugs or regimes on the Macmillan website here

See if there is a Look Good, Feel Better workshop near you - they are especially useful for advice on disguising missing eyebrows and eyelashes

Ellie's Friends
Something to look forward to
Cancer Research UK
CRUK science blog - this is interesting and very useful for getting the facts behind any big cancer headlines
Breast cancer care
Shine cancer support (for people in their 20s, 30s or 40s with cancer)
NHS What do cancer stages and grades mean?
Macmillan staging and grading (this is in the breast cancer section but applicable to many other cancers too)
CRUK stages of cancer
CRUK cancer grading
Don't forget the kids

I like the sound of snack round not that I need it!

Good luck with the portacath fitting. Is it under GA? Mine was only under local and I quite enjoyed it. I hope you get a pillow soon. If only they'd told you you could've brought your own

Glad you've got something to distract you. Maybe you rustle up some decorative pillow covers while you're waiting...

Not sure if it's general or local tbh.

Chemo starts Thursday!!!

Wow! That looks fab. I tried cross stitch a few times. I just do not have the patience. It's a shame as I have a really pretty little kit I'd like to make

Good luck to everyone having procedures and appointments today. I'm so sorry, I'm really struggling to keep up with who's having what and why

Still no appointment. I rang the hospital yesterday, they're now saying I should hear by the end of this week. I then tried my gp surgery to see of they could help, but no, but they advised ringing back to let them know I could accept a cancellation so I did that. Three phone calls, which probably took

@BravoOscarOscarBravo I really hope you get some news soon. Are there any trips/activities you can do with your DCs?

If it makes you feel any better imagine me irl having my mri with cod liver oil tablets taped to my nipples feeling like I'm being attacked by aliens on the starship enterprise!

What a dramatic afternoon!
Woke up vomiting had ct scan through vomiting got given anti sickness through cannula, massive reaction, talking shit eyes as big as saucers couldn't stand up, back into bed, that scared the drs enough to chase up ct found out rectal cancer is spreading locally. Not sure if that's good or bad, lungs/liver/kidneys clear.
How's everyone else's day?

The cod liver nipple covering is just so bizarre ranout!

No arse-kicking tips from me Bravo. It sucks. Don't worry about keeping up with everyone else's posts. Sorry you've not got any further with the appointment and that it's impacting your school holiday fun. I hope you can find some nice distractions :)

purple I hope your assessment went OK and that you got answers to your questions

Pandora I hope that they found you a pillow and that you are recovering well from the procedure

Still coughing and breathless here. I think I'll have to go to the GP if it's the same tomorrow. I'm going on holiday on Friday so I want to be as OK as possible for that.

Cross-posted with you planned. Sorry you've had such a dramatic day. Was it IV cyclizine? I once had it in A&E and had to be wheeled in to resus. Lots of flashing lights and excitement. Ask them to dilute it in a bag of saline next time to reduce the effects.

That sounds like good news. Have they given you any idea of the treatment plan yet?

Yes was cyclizine (?) it's made me off all day.
I'm praying it's good news,I've got to have an ultrasound where they take some fluid as there's big pockets around the bowel. I just want a proactive plan

How was your assessment purple?

Aw Bravo the whole thing is exhausting, the only tip I can give you is to take it as easy as you can and look after yourself. If you're really struggling to sleep ask your doctor about sleeping tablets, you'll feel better after a decent nights sleep

Ran is the cod liver oil on nipples actually a thing?! I've never heard of it

Hope you're feeling a bit better now planned Are they keeping you in hospital to keep an eye on you?

My assessment went fine, pulse was a bit high but not surprising the nurse said. I'm having an Ileostomy. The nurse said I won't be able to have long soaks in the bath anymore other than that it seems pretty straight forward

Oh @plannedshock that sounds bloody awful. Hope your feeling better soon.

Yep the cod liver oil tablets on the nipples is a thing! It helps the MRI machine see where your nipples are! They can find fat easily!

I got the all clear-it is rather extremely lumpy glandular tissue rather than anything else. Thank you all so much for letting me lurk, especially while so many of you are dealing with such scary stuff.

I’m a lurker mainly now because I don’t have the concentration to keep up with a fast moving thread. Diagnosed late 2015 with Her2+ IDC. Had mastectomy, FEC-paclitaxel, 18 Herceptin and rads finished April 2017. Local recurrence to supraclavicular lymph nodes in early 2018, quickly spread to liver, bones and lining of lungs. Finishing 6 TPH next week and then scan to see if I carry on with H&P or move to Kadcyla. Not loving Docetaxel, will be very glad to finish it.

I’m probably going to give up work soon because my SSP is coming to an end. My BCN has applied for PIP via a DS1500, so I will find out soon if the application was successful. This was recommended to me by a Benefits Advisor at my cancer centre. They assured me that it doesn’t mean I have 6 months, but that metastatic BC is unpredictable so they can argue it is possible.

Fingers crossed for your PIP Mysillydog. And lovely to see you :)

purple did she say why you can't have long baths?! not surprised about your pulse!

planned I hope they can sort that out for you quickly :)

Oscha that's fantastic news just what we like to hear

Oscha that's brilliant news! What a relief! Hopefully we won't need to see you again, in the nicest possible way of course

Sillydog as long as you have the DS1500 you'll automatically get PIP, it should take about 2 weeks to go through. You can also claim for a blue badge too. I'm currently on the sick but I'm not going back to work either

Leslie I'm not allowed long baths because my stoma bag thingy will fall off. I can have a quick bath but I can't laze around in it like I normally do

To be honest purple I reckon that's a load of nonsense then. I wondered if it was something specific to your surgery, but you can still have a bath with an ileostomy. I go swimming and in jacuzzis with no problems!

And even if the bag starts to come off, it won't just fall off all of a sudden. It will loosen a bit round the edge so you'll notice and hop out the bath and change it.

I'm not vegan, but I find VeganOstomy very useful. He does lots of videos and tips for "ostomates". Very few of them are related to being vegan, mostly just general stoma care. He's also on Facebook.

Oh that's good to know. I love having a soak in the bath. I'll check out those videos, they haven't said what I can or can't eat yet but I'm guessing they'll go through all that when I wake up. I'm currently covered in permanent marker so they know where to put the bag tomorrow

You'll be on a very restricted diet (low fibre) to begin with. But yes they'll tell you what is allowed. You won't be up to eating straight away anyway.

planned that reaction sounds awful, hopefully the fact it your cancer is localised is a good thing. It sounds positive that your lungs etc are clear.

Oscha great news

Purple all the best for your op tomorrow. I hope you manage to get a decent sleep tonight.

I hope the coughing/breathlessness clears up quickly Lesley is this because your lungs are affected or a side effect from chemo? Are there any breathing techniques that can help at all? Am thinking of in through the nose out through the mouth or even using a paper bag (although I think that is more if someone has panic attacks) or do you have inhalers when it gets like this usually? Sorry for the 20 questions!

Well my girls got back today just before tea time, the youngest took one look at my bald head and asked me to put my wig on! I did & then took it off a bit later as my head was hot and they seem to have acclimatised now (although I think she will want the wig on if we leave the house!) it is good to have them at home again though

www.amazon.co.uk/Corinne-Lapierre-Lavender-Houses-Sewing/dp/B00XBK2TJ6/ref=sr_1_10?keywords=felt+kits&tag=mumsnetforum-21&ie=UTF8&qid=1534284783&sr=8-10
Lesley this is the felt kit I have. I thought it would give me something to do when the kids were in bed, but have had it ages and it has not been started as the reality is that my youngest avoids sleep at all costs and I also discovered Netflix!

Oscha I'm so happy for you, I hope you're toasting your result as I type :)

Ranout I now have visions of you with a cod liver oil capsule perfectly balanced on each nipple, what a party trick thanks for making me smile

How scary planned I hope you're recovered now, its such a bugger when you get unexpected reactions to stuff like that.

Purple, I hope allows well for you tomorrow.

Hope the cough clears up Leslie

Thanks to all who gave advice. I'm reluctant to try sleeping tablets just yet. I think I'm just need a good cry tbh but can't seem to let it go. I had been losing weight and exercising until this reared its head, I think a good long (for me) run tomorrow may well help as it's been a few days and I've been so flaky that I've not really tired myself out physically

I hope you get your appt soon Bravo and feel less anxious as a result.
Running is probably a good idea, The waiting is the worst part. I started some decorating as a distraction and also did a fair bit of burying my head in the sand and attempted to carry on as usual.

If it puts your mind at rest, I think it is 9 out of 10 breast lumps are nothing sinister, but if you are unlucky to be one of the 1 out of 10 people, it is very treatable. Maybe plan something to do with the kids 2mo and make yourself busy, it may help to take your mind off it all a bit. Good luck & hope you hear soon :)

Just nipping in quickly to wish you lots of luck today purple