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

Addle I have thought about it but am desperately trying to avoid having to get my bum out again!! So I'm trying loperamide and bepaden cream to see if it helps. Thanks though. I should probably do it but am being a child instead

Aw Chase that's not shallow at all! I'm stressing about my eyebrows falling out which is pretty shallow as it's not the end of the world but you not being able to go away is rubbish could you, your mum and daughter go somewhere for a couple of days before your treatment starts?

The hospital doesn't like you to miss any radiotherapy appointments, I had to go in twice a day 6 hours apart to make sure I had it over Christmas as it was closed Christmas Eve and Christmas Day

Mrsp it's good that you haven't had to make the decision completely by yourself, if the doctors are recommending the trial I think that's what I would go for

addle purple & dulce thanks.

It is just a logistical mare, plus my Mum & Dad are clucking. I was trying to save them for Aug when the cumulative effect has built a bit & they can take the kids to theirs then. They have a 350 mile round trip to come to me, they have said they don't mind to do every chemo and stay for a few days to make sure I am ok, but my initial chemo is fortnightly for the 1st 8 weeks. My friends who have offered lifts are not all on the doorstep exactly, so am feeling bad to ask as they all work and my chemo time is 9:30am. My neighbours have said they will help & I can get cabs to fill in the gaps. I had kind of assumed I would be OK to drive (after the first one) so this is making me feel like I am going to be constantly asking favours.

I am getting my hair chopped off 2mo into a close crop. That has made me cry twice today when brushing my hair. It feels so vain of me, but I like my hair at the moment.

I don't feel ready to deal with it all (even though I want to start treatment asap to get rid of it) people keep saying how strong & brave I am being which is meant with kindness but it is irritating me as I haven't done anything yet and am only dealing with the diagnosis as have no other choice in this position. Anyway, apologies for he rant. I am sure I will feel better once out of this limbo state & treatment has started.

miles do you mind me asking what happened when you had your allergic reaction and how quickly you knew you were allergic? Was it instantly on having chemo or once you were back at home again?

TQ your garden looks fab, I could do with a weed clearance in mine. It is a brick paved one with way more greenery poking through than it should have.

I am meeting a friend for a dog walk & lunch, so hoping that cheers me up a bit. Have a good day everyone & apologies if I have missed anyone, I started this post before the school run & if I refresh I will lose what is already typed

dulce - tbh I am sick of doctors so can see why you’re avoiding them!!

Wow, everyone one of you on here are so strong!

I don’t really want to hyjack the thread and take anything away from you all but I was looking for some advice and thought this thread would be a perfect starting point.

My MIL has very recently been diagnosed with lung cancer that is operable (this is as much as we know for now, she has known for a few weeks but only told us at weekend) and I was wondering what support we could offer her.

My DH is going with her to her appointment tomorrow to find out what they are actually going to do but what kind of questions should they be asking and what support have you found invaluable? She is still married to my FIL but he works away during the week so isn’t really there and I want us to be her rocks.

Sorry to derail the thread xx

noodles so we are only really different because of the HER2 - I'm negative. I was trying to get my head around it - I do think pre-chemo brain is s thing!!!
Regarding transport, I was told that I qualify for hospital transport there and back, it's free you should really look into it! Just give them plenty of notice. Also, as a thought could your little ones go on sleep over visits to grandparents and dads? Then you can concentrate you and the dog?
Also, play schemes? Can they go with friends to them? Then you can see them off in pj's and welcome them home with sausage rolls and tomato sauce for lunch? Or if you know any mums who are really "rah rah rah" they can take them to the morning and afternoon session of play scheme with a sausage roll picnic lunch!!!!

purple I've bought an eyebrow template from Wish, and I don't even know whether or not I'm having chemo, so thinking about it when you know it's going to happen is absolutely acceptable!

Noodles my reaction started early evening, after chemo.

My temperature went up. (Keep a thermometer near at hand to check if it goes over 38. Mine went to 37.5). I took ibuprofen, which brought it down a bit.

I then started getting itchy, and had a very uncomfortable night.

In the morning my face was very swollen - it looked quite dramatic - and my whole body was covered in a hot, dark red rash.

Off to A&E, but no-one was worried about blood-poisoning, as I'd had a similar (but milder) reaction to allopurinol.

It's relatively rare, so hopefully I'm taking one for the team in this thread.

Still being pathetic so just waving from the sofa :) I hope everyone is as well as can be!

Definitely don't drive for your first chemo so you can see how it affects you. Mine makes me feel like I imagine being high must feel like. No way would I be safe to drive! But others do, so it really depends on the regime and how you react to it :)

mrsp a good idea re hospital transport if I get stuck. I can probably get lifts one way, also my work mates are out & about on the road, so may be able to grab a lift there if someone is close by. My parents are the only reliable grandparents & sadly their Dad hasn't had them for nearly a year as has not been fit enough. I have a fair few sleepover offers, so will get organised with a rota I think. My parents are ace and have said they are retired & will come up for every chemo, do I may take them up on that. I am sure if I feel dreadful I will welcome it. They can also take my kids for a couple of odd weeks in the holidays too, which will make life easier.

miles that must have been scary for you, esp when you woke up to a dramatically swollen face! Thanks for the info & yes (no offence) but hope you have taken that one for the team!

leslie have you managed to eat anything other than ice chips today? At least you got to the sofa again. The temperature is supposed to cool down soon for a few days, so hopefully that will help.

I feel a bit happier after getting out today

offside in my experience, the doctors have lots of information to tell you and any questions I had thought of which I had jotted down were covered by them anyhow. On the Macmillan or cancer research websites they may possibly have pointers to questions around lung cancer that you may want to ask the doctor.

Random question: does anyone else get irritated when people ask you how you’re feeling (when they know you’re having chemo) and they seem to want to actually know, but then when you tell them honestly they just say ‘well it’s nearly over’ or ‘that’s good that you’re feeling better than last week’ or some other dismissive trying to be positive comment?
Could just be me but so many people seem to do it (especially my DM!) and I feel like just answering ‘fine’ from now on (or is that what they want me to say?! )
I’d rather they just said something about how crappy chemo is and then I can change the subject!!!

Yes yes yes Addle. Whenever I try to say how tired and debilitated I am from the chemo because it is so debilitating, my DSIS tells me to have lots of little naps, because that will help. FFS!!!

I get "I expect you're enjoying the sun." No, actually, I'm not. Chemo and sunshine don't mix. I've told you that before.

I've tried to explain (and Leslie will know about this) that manky toes mean I can't walk very far and have to wear weird footwear sometimes, and I just get back stupid comments: "Couldn't you find the matching sock?" "Did you forget your walking boots?"

I'VE JUST TOLD WHY I CAN'T WEAR NORMAL FOOTWEAR!!!

People just don't listen. They think that all they need to is make the appropriate noises.

Lol TQ That does make me feel better! I was feeling so annoyed again earlier, and DH doesn’t quite get it so I started to feel bad that I am a grumpy shite - but now I don’t

I do wonder sometimes whether we've gone too far with 'normalising. chemo and cancer. All the Macmillan ads about 'a mum is still a mum' and 'a sister is still a sister'... have they gone too far the other way? A mum is not a mum when she's zombied on chemo and can't cook dinner or read a bedtime story or play Polly Pocket with the six year old (in mum's eyes at least).

I've lost so much - my dog and my dog-walking friends: my job and all my work colleagues: my line-dancing and all my enjoyment and friends there too. I've to sell my Hyde Park BST concert tickets because I can't walk far enough for long enough, so my friends are all having fun without me. And let's not mention hope and a future.

I'm not dog owner or a walker or a line-dancer or a professional global comms expert any more.

A lot people seem to think 'oh yes, you'll be fine, six months' worth of a bit of discomfort and a few drugs and you'll be as right as rain. Everyone has cancer these days.

Not a pity party btw, I am resigned now. But when people think it's 'fun' to shave their heads for cancer! And think that cancer it's normal, I do think we've gone too far.

Noodles I'm debating if I should get mine chopped off but since I start chemo next week there's probably no point in paying for a haircut since it's likely to fall out on the first treatment

Offside will your MIL be having any chemo? If she is and you can find out which chemo she's having there maybe someone on here who's had it who will be able to tell you what side effects she's likely to have. Also ask them about putting her in touch with Macmillan who have advice on pretty much everything cancer related

Mrsp I've ordered some eyebrow stencils from eBay, Im just worried about putting them on wonky

I couldn't agree more TQ. I know people mean well but they really don't get how it all makes you feel. It's not just an illness that you get treatment for and then you're fine, the side effects go on for years and unless they've actually had it themselves nobody understands how ill chemo makes you feel.

Not to mention people talking about future plans forgetting that we probably aren't going to be here.
I looked at the best by date on a tin of beans this morning and realised I probably won't be around before they go out of date

TQ & Addle I think some people just feel they have to put a positive spin on everything as they just don't know what to say otherwise.

I am sorry about you not having your dog TQ as they do leave a gaping space if you are used to them being there. That is crap
Can you organise something else with your friends which you can join in with as you have had to miss out on Hyde Park? Not sure what would be a good alternative, but if you felt like you had had a good catch up with your friends, it might make you feel less upset at having to sell your Hyde Park ticket on. It is rubbish though and can completely see why you feel robbed of so much due to the treatment.

I am already getting the rage when a few people have referred to my having cancer as my 'journey' ... Wtf am not on X factor!!

purple must be a bloody long date on those beans (well I hope there was anyway) x

purple how long is your hair? I am still not decided on whether yo try the cold cap yet. I think I will probably at least try it once and see if I can tolerate it. Apparently the weight of hair if longer may make it more likely to go, so I feel I may as well chop it first incase it helps.
One nurse told me the transition is less of a shock (for kids & prob me too) if it is cropped first, plus I think I will be more upset if I see loads of long hair on my pillow if the cold cap doesn't work or I don't use it.

I’ve been reading this thread for a while and decided to post to help noodles if possible. I was diagnosed last year with her2 positive breast cancer. I had 6 rounds of chemo, 3 Fec and 3 docetaxel with herceptin and perjeta. Lumpectomy and snb in sep and 20 rounds of radiotherapy. I had my last herceptin jab 3 weeks ago. I didn’t cold cap. I had very thick, medium length hair and just before my second round of chemo I shaved my head as I couldn’t stand the constant loss of hair all over the house. Prior to chemo I bought a fab wig from a local salon, who cut and styled it to my personal taste. It was fab. Didn’t itch at all and looked completely natural. I wore the cotton caps around the house and at night but never left the house without my wig. I left the fringe long enough to cover my eyebrows so never looked odd. Any worries, or questions just ask. I ‘ll do my best to help.

I have long thick hair just past my shoulders, it was much longer up until a few weeks ago when I cut about 4 inches off it.

I've just ordered a couple of wigs from eBay. I hadn't thought about a wig with a fringe to hide my eyebrows. Good idea Cats
I'll try and get in touch with Macmillan too to see about getting a half decent wig depending on the price

Thanks cats that is a really good idea re the fringe too. I currently have a natural wave at the front of my hair, so cannot have a fringe so that had not occurred to me about hiding my eyebrows. Did you have one wig or a couple?

You sound to have had fairly similar treatment to what is in store for me. I am doing 4 rounds of dosetaxel first every other week and then EC & the hormone part (I haven't read that bit of the info yet fully)
Thank you, I will ask if I have any questions.

My hairdresser cuts wigs for the local cancer centre, so I will take whatever I get to her for some styling. My local cancer centre has a wig bank. Apparently there are lots there which have been donated, lots that have been hardly worn as the people who bought them didn't get on with them. Might be worth seeing if your local centre has something like this purple
I think I have a voucher too in my information somewhere from the nhs for £65 off a wig if I buy one from a couple of recommended outlets. I haven't looked into this yet at all as was going to speak to my hairdresser first.

Sorry purple too, if my comment about the baked beans was inappropriate. I thought afterwards it may have sounded a bit flippant & that I was doing that positive spin thing similar to what was being complained about a few comments earlier. It is an awful possibility and horrible for you to have to deal with these thoughts. Fingers crossed this next lot of chemo stops that being a reality. Sorry if I upset you though as it was not my intention x

Dulce hope the dire rear getting better. If not as addled says hopefully someone can give you something for it. Are you still just lopemeride? Maybe time for lomotil or something stronger. Although appreciate you not wanting yet another bloody doctor's appointment. I'm almost two weeks after treatment ended now and my dire rear did seem to be subsiding so had tapered down meds. Back with a vengeance today though no idea why. Particularly annoying as I had a day out tomorrow planned involving a fair bit of driving and at this rate I'll not be able to move more than 10ft from bathroom.

Addled and TQ as noodles says I guess some people just feel they need to try and be upbeat to support you. My mum is the opposite and catastrophises any symptom I tell her about which is also her way of being supportive but equally annoying. She also keeps comparing me to her 80 year old friend who has bowel cancer - obviously a bit of a different situation! TQ sorry to hear about your dog, that's really sad - and the concert too. No two ways about it - cancer is shit. And yes noodles definitely not x-factor !

to everyone!

I have just looked through my info regarding the wig. There are 2 places locally (both about 20 miles away in opp directions) I can go to and for a £90 wig, I have to pay a £67.75 NHS wig prescription charge. There is a contribution of the difference from the health and care team if I fit the criteria for a wig prescription. Any wigs over £90 I also pay the extra above £90.

I may go to the cancer centre later today and see if I can try any on to get an idea of what style (& length of fringe!!) and either see if one there is suitable or have a look at the outlets. There are some natural looking ones online at a place called wigsbuy - but I think I would rather have a good idea of what suits me before I order anything from there.

Sorry your dire rear is back tayto the effects seem to go on an awful long time after treatment. I am going to Boots today to get some bonjela, gaviscon and Imodium as it sounds like I will probably need them.

I don't know what to say TQ and purple but I wanted to say I am thinking of you and I wish I did know what to say.