Cancer support thread 63 for a handhold or advice and anything in between

[purpleunicorns]

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

@noodles44 don't worry about mentioning chemo issues I see it as a learning curve of what to ask for! I felt quite knowledgable when they said they'd pop a line in for the whole time I'm having chemo and I said oh a pic line!
Hope everyone is having an ok day.
Kids seem ok. My 4 year old isn't really aware. My 7 year old has lots of questions but is ok and I've told some of her school friends mums and her dance teachers today as she's on dance camp all week.
Being me, I've made an appointment to have my hair cut off short and just looked into semi permanent eyebrows however they were horrifically expensive so I'll be letting nature take its course!
Whoever said they'd succumbed to birkenstocks - welcome to the club I have several pairs!

Ranout twas me who is admitting to Birkenstocks . There was a thread in style & beauty and I'm afraid I let myself be influenced. I toyed with the purple ones (which I loved) but have settled for plain old black. My chemo adversely affected my toenails - like Leslie - and I have 3 totally disgusting ones that make it very difficult to tolerate 'normal' shoes. I have to say I'm impressed so far!

Ooh I didn't know that Macmillan nurses were funded by the NHS although this is the first time I've had anything to do with them.
You should also be able to claim ESA but you'll be put on the support group which means you won't need to go to any interviews, you might get a discount on your council tax too. I'm surprised you've managed for so long without any help, fingers crossed you'll get a blue badge too

Ranout I looked into getting my eyebrows microbladed but it was too close to getting my chemo which would have increased the risk of infection. Plus I've seen some awful microblading done and I didn't fancy paying over £200 for the privilege. I bought some eyebrow stencils and pencils instead and although my hairs fallen out no other hair has yet. Still having to shave my legs

I've seen some really nice purple birkenstocks but I don't think I'm brave enough to get them just yet. If my toenails start falling out I may be tempted

@purpleunicorns eyebrow stencils seem like a good option. I'll have a look. As you will probably gather I like to be organised. Once I know when my treatments will start I'll have a spreadsheet of where the kids will be and who will be sorting them out! I'm hoping it will be me most of the time.

I am like you ranout re being organised. I chopped my hair off before chemo. I have got cotton caps, wigs, eyebrow stencils, false eyelashes & kids organised as much as possible. My cold cap will probably work now!!

The Beverley Hills Anastasia eyebrow set is supposed to be good. I have never drawn an eyebrow on in my life before, but I am worried about missing them & eyelashes more than my hair really. As time goes on, I am much less bothered about the thought of losing my hair.

Birkenstocks rock too, I wear those anyway. I wonder what will work in winter though... Maybe woolly Ugg boots, or would toe nails get caught or tangled in the sheepskin maybe?!

Probably wise to postpone chemo if you have felt dreadful today Leslie, I hope you feel better soon.

purple I've been very lucky that I was able to move back in with my parents and they cover most of my expenses. Plus there's not really much I actually want/need to spend my money on now. So low outgoings and reasonable savings have kept me going thus far :)

Apparently there's a national company that offers free eyebrow microblading to people with chemo hair loss or alopecia etc. I don't know the name though, sorry. My friend had it done recently as her eyebrows hadn't grown back that well after chemo. They look really good. She was saying she had seen some disasters so you need to carefully check the before and after photos!

Thanks noodles I'm already feeling much better :) I was on my maximum dose of morphine earlier and still screaming the house down luckily we are detached or I'd probably be the subject of an AIBU thread by my neighbours!

Leslie I didn't realise adhesions were THAT painful. So glad you're feeling better now, is it worth seeing your doctor about stronger pain relief? Fentanyl patches seem to work well for people. I hate the thought that of you being in so much pain

Although it's good you have your parents looking after you it must be awful for them to see you hurting and there's nothing they can do to help.

I've had a look at the blue badge thing and if you're getting the maximum PIP which you will if you get the DS1500 form then you do get a blue badge so hopefully that helps a
bit

Wow Ranout you really are organised! Although with young kids to look after too I think you need to be

I'm going to look into microblading once this lot of chemo is over, I'm definitely more bothered about my eyebrows than I am my hair

@WhatWouldLeslieKnopeDo I hope your feeling much better today.
Waves all round.

Query re work. Obviously, I don't have many details of my chemo then surgery yet but what has everyone done with work?
I'm very lucky as I'm self employed (although that means no sick pay) but I can pick and choose when I work and wouldn't have been working for my main client till mid September anyway. My other client I can an hour here and there from home.
Will a few hours in between chemo be doable do you think? Or am I being totally unrealistic?

Ranout it depends on which chemo you're having and how you respond to it. My first lot of chemo I worked through it all, I felt a bit sickly and tired but it was doable. The chemo I'm having now is a lot tougher so I'm on the sick at the minute. Is your chemo going to be weekly?

@purpleunicorns to be honest I didn't listen as well as I should have had! We think they said once every 3 weeks which at the minute feels doable.
I'm sorry yours is so rough.
I must say this group is amazing.

If it's every 3 weeks you'll probably be fine to work if you're working from home, you'll probably feel pretty rubbish around 4 days after you've had the chemo then you should start feeling a bit better day by day. Don't push yourself though, your health is more important than work

I have to agree, this lot are pretty amazing! And it's nice to have somewhere to come and have a bit of a moan when you don't want to talk face to face with people

I haven't worked through my chemo but that's partly because I get 6 months full pay and the occupational health nurse advised me not to. If I had been self employed I would probably have worked through the first two. The last two were too rough and I barely got out of bed. Best thing you can do is have your first one and see how you feel. Good luck.

Yes I agree - depends on the chemo. First two hard (especially second because of awful sickness!) but manageable, second two I have struggled even with basic day to day tasks due to tiredness tbh! Still exhausted but LAST DAY OF TABLETS TODAY!! Woohoo!

Hope you are all doing ok Lacies. Will be better able to keep track and properly namecheck in a few days I hope.

Feeling like a bit of an intruder when you all have so many issues to deal with, but can I ask how you managed to get through the waiting time between discovering some sort of symptom and the hospital appointment? I saw the GP on 12th July with a lump on my leg (5cm+ and growing). She is pretty sure it's fine and just a lipoma, but due to size and growth I am referred for an ultrasound. Had my appointment through and they'll see me on 5th September. So nearly 2 months' wait to get through. I know... GP is fairly certain it's fine, but I just struggle to silence that little voice at the back of my head...

Ella if they even suspected any sort of cancer you would have been seen within 2 weeks so I know it's hard waiting but it's good that they don't think it's serious

I managed to get through the waiting by keeping busy, I decorated/sorted my wardrobe and cupboards out and did everything I could think to do to take my mind of it

@EllaSaturday yep I agree if they thought it was urgent you need to be seen in 2 weeks which I know doesn't help the worry. I just kept busy but mine was urgent so flew past. Fingers crossed for you.

Sorry too drowsy to reply properly. I ended up in A&E with a suspected obstruction but of course it sorted itself out soon after I arrived! I mostly just dozed. All the tests were fine so they were happy for me to come home.

I never would have imagined how painful they could be either purple it seems so ridiculous when all it is is scar tissue it's right down in my groin/pelvis so I guess there's lots of bits in there to get stuck together! Silly body.

Ella that is a long wait I can't really add to what the others have said but I hope it all turns out OK.

addle YIPPEE!

The heatwave seems to have picked up again so I hope everyone is managing to stay cool :)

Woohoo addle

Yey for the last day of tablets Addle!

Glad your out of hospital Leslie and hope you're feeling much better now. I'm guessing you can't have more surgery to stop the adhesions as that would just cause more? Hopefully they'll come up with a treatment for them in the very near future

For all the lacies with breast cancer, have you seen these pillows?

Addle that is brilliant news re the tablets yay!

Leslie that pain sounds awful, the closest I can imagine is after an emergency c section with my first daughter. About 3 days after noting had been thru my insides, my constipated gut decided to proceed as usual. It was like all my intestines had been velcroed together and It made me shout out it was so painful. I really feel for you to have the adhesions so regularly & glad you were well looked after in a&e

ranout I am currently not working, for similar reasons to dulce plus my job has a fairly high risk of infection, so I just decided it was not worth it. I am using all my leave first and then my 6 months at normal pay off sick.
I have had 3 days this week of feeling pretty normal, but my chemo at the mo is fortnightly. If you are 3 weekly you should be ok most of the 2nd & 3rd week I would imagine, but it can be cumulative.
I have had chemo today and had stronger nausea meds, so feel loads better than I did on the night of my first lot of chemo. Hopefully this continues. My head is a bit throb by from the cold cap, but not to the extent of last week either. Perhaps it was caffeine withdrawal and not the cold cap after all last time!! I didn't think I drank that much either. Am still not fancying a coffee yet...

I agree with everyone else Ella they mustn't suspect cancer for such a long wait... I decorated my lounge (well got it mostly done) in between appts. Am hoping i can finish it this cycle if I am not hit with nausea so badly...

Waves & hello to everyone

purple those pillows look fab, if I have a mastectomy I will most def bear them in mind.

How are you doing?

Congratulations on the last tablets addled!
Ranout sorry I can't remember the chemo you're having. I did work through most of mine (Capox for colon cancer) but maybe would have been better taking things a little easier as was tired (however I'm not UK and sick pay is rubbish here). Might be manageable though especially if your work can be flexible - no way I could have worked the first three days after my IV but rest I was ok (even if I did go to bed at seven every night!). Maybe try first cycle and see how you go?
to everyone else. I've been feeling a bit knackered and depressed (I think just after effects of chemo) but feeling better now. I'll read through and catch up.

The steroids do not help sleep. I had some at 11am (but poss a double dose, it was given at hospital by the chemo nurse and I am on 2 tablets a day for the next few going forwards) I am wide awake & also a bit queasy as I should be asleep. I need to remember this for my clinic appt!
Meanwhile I am listening more catch up radio to attempt to send me off .... Yawn X