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

Blimey Purple! So soon? Really? You've just had major surgery.... shouldn't you be in for a day or two more? Even though I'm sure you're desperate to get home.

That's what I thought but the doctor said I was fine to go once it started working One of the nurses didn't seem too happy that I was going but my stoma is working and changing the bags is pretty straightforward so there wasn't really any reason to keep me in. I'm still a bit squeamish changing them but I'll get used to it. I'm got a stoma nurse coming out in a few days to check on me

Plenty of painkillers and a decent nights sleep will do wonders. Hopefully

Purple it's not just an op, it's a life-changing shift. Have you had any counselling at all? It all just seems a bit .... blase (with an e acute). And you're coping amazingly well but when do you get to rant, rave, cry, scream.... maybe you don't need to. Has your DH been involved? Does he know how to help you change the bag?

Sorry, ignore me if this intrusive at all. It's just that you are truly amazing .

Wow purple that seems quick, in hope your journey isn't uncomfortable and you have enough support at home.

I too have my clinic appointment, next Tuesday... I have a question... those of you that have attended the breast clinic, did you go on your own? DH has offered to come with me, and all things being equal I'd want him to come, but this would mean the IL's coming to stay to watch dd2 while we were out. If it's bad news, I don't want anyone other than DH and the Dc's around. But otoh if it's bad news is want dh with me... It's a dilemma. I KNOW that the chances are that all will be well, however my gp told me to brace myself for treatment as he was fairly sure it was cancerous due to how the lump felt.

In laws live 100 miles away and are late 70s. MIL is lovely, FIL is well meaning but can be extremely annoying and insensitive. Arrggghhh.

Hello Bravo. I would definitely take someone with you. I took my sister. It helps to gave support there and also someone else's memory for any info you get.

I’m having the same dilemma Bravo, if I have DH with me then someone else will need to be with DC, they’ll obviously want to know how it went and if bad news I’ll need time before talking about it. I do tend to overthink though.

I think I’m going to have DH stay at home with DC and go myself, I got hold of my Mum - she really didn’t seem phased at all, which is good. She’s busy so can’t come with me Thursday. I’m 5 mins for hospital so not a long drive back & I’ll be less stressed by myself I think.

I think I'm inclined to agree PenApple. I'm also a very short drive from the hospital so he could always come and collect me if need be. Unfortunately my sister lives even further away than IL's and friends are working. I've not told many people anyway.

I have a couple of questions I need to remember to ask, I'll take a notebook and make notes.

I went to the breast clinic myself but would recommend taking somebody with you if possible, it's a bit of a whirlwind with all the tests they do and it's handy having someone to take notes

Yes blood thinning injections Leslie, they made me do one before I left and it went better than I was expecting it too as I hate needles

Not intrusive at all TQ It was all a bit of a rush and felt like it was "right, you're done. Away you go" DH has seen the bags and isnt squeamish in the slightest so I know if I need help he wouldn't mind. Although nobody warned me about the wind peppermint tea has been ordered

I've had no counselling at all, I'm somehow managing not to think of the bigger picture and just get through one problem at a time at the minute. I know that's not a good way to deal with it but it's working so far and I don't feel as overwhelmed when I take it step by step

Hi @BravoOscarOscarBravo and @PenApple so I'm probably about a month ahead of you guys and I hope you aren't where I am! Not that it's that bad! I'm also having a weekend away before treatment starts.
So my bestie came with me to the breast clinic in some ways I'm pleased she came as she asked questions I wouldn't have thought of. But I felt really bad as she had lost her dad to cancer 18 months previously, my DH was at home for the kids.
I think looking back it probably is good having someone there. If it's all clear, everything crossed for both of you. Take full advantage, go for lunch and have some child free time. If something needs further investigation you have someone else to listen to what their telling you.
Going forward, all I can say is what matters to me, and that is being surrounded by supportive people. My in laws are massive pessimists, I let them look after the kids after I needed to speak to my oncologist for the first time and so far it's the only time I could have wept. I have renamed them the dementors from Harry Potter and my DH agrees! We will sort my breast cancer without them!
After that diatribe, ladies fingers crossed for you both, you can do this whatever your results

leslie thank you for the further info and it makes perfect sense, he’s having an mri scan and it’s rectal. They found it before they’d even begun the camera work. It’s what one niece had and they’ve managed to connect her back up again. Her sister wasn’t so lucky with the reversal surgery but they’re both well now and getting on with life. One of their brothers also has the faulty gene but is clear so far. What a legacy.

purple I’ve just caught up on your news. I hope you’ve made it home ok and you feel better in your own bed.

purple you sound amazing and I am in agreement with TQ you sound to be taking it in your stride very very well. I expect prior to the op you did a lot of worrying about it, quite often the procedure is not as bad as you anticipate perhaps? (Or it is but you have already done your crying 1st) I am sure you will have your moments and it could be worth seeking out a Macmillan counsellor if needed. Your hubby sounds like a star too. Have they indicated when they hope your next chemo will be yet too?

planned how was the endoscopy? I hope they have given you a plan to go forwards with of treatments you can have.

pandora glad no spread. I have breast cancer with one node also effected. No one has mentioned time scales to me at this point (is that something you asked specifically about?)
My radiologist consultant told me that she thought I had cancer whilst doing the biopsies. She said they would probably shrink it 1st with chemo so the op wasn't too invasive & so in 10 years time, every time I saw my boob I wasn't reminded of the process. That comment alone is what has stopped me asking. Apparently I will go down a cup size on one side. I heard they may take some tummy fat to put in the gap (poss wishful thinking!)

leslie enjoy your trip away.
My chemo has felt less nauseous so far, but it hit me on day 3 (equivalent of 2mo) so fingers crossed it stays that way

Waves & hello to everyone, feeling exhausted, time for bed!
Have a good night (will be thinking of you both purple and planned)

@pandoraslastchance - meant to ask before - did they tell you what type of breast cancer you have today? Is it hormone positive?

@ranoutofquinoaandprosecco - I found out about fasting as concept a few weeks before I started chemo but couldn't process the information as I had some sort of mental shutdown and then when I felt able to read up on it, it was too close to chemo starting! So for the first cycle I didn't do it, but I did for the subsequent five. I think that was quite useful in a way as it gave me some insight into how I reacted to chemo without fasting.

My starting point was this article. I don't agree with everything the writer says but it was a good starting point.

I then read this study (which is now quite old) but it gave me some useful info on what sort of length of fast to go for and what sort of reduction in side effects I could expect.

I also spoke to my oncologist to check it was ok to try it. She said yes, on the basis that it wouldn't do me any harm, although it was important that I didn't lose weight overall (any weight lost would have to be regained by next cycle)

After the first cycle (non fasting), I then fasted (more or less total abstinence from food) for 3-4 days before chemo, and for 24h afterwards. During this time I was still able to go about my daily life (working, looking after small children etc) without too much bother. I don't really know how much of an effect it had, but I did have mouth ulcers after first round, but then not a single one since! And actually, my relationship with food after chemo was pretty normal after each round, ie I was able to eat without pain or taste distortion and easily put on the 3-4kg I'd lost during fasting.

Best thing to do is to read up on more recent trials to see where they are with it. I think its important to retain some control of your life during treatment (so much is taken away in terms of treatment, appointments etc) and to do (within reason) whatever you think will help. However, it is a bit of an undertaking and it might be that the benefits aren't really worth it for some people.

Sorry for long post - hope some of it is of some help!

Had endoscopy, they think it's in my stomach too, the whole lining has gone thick which is why I can't eat because the stomach won't "give"
I know I'm terminal but it's another blow.
MDT meeting today basically confirmed what I've already been told, very aggressive, very advanced, fucking everywhere, palliative care.
I'm home now which is good for the soul.

Oh no planned I am so sorry to hear that, but glad you are at home again rather than in hospital and are getting some TLC from your loved ones. I know not enough but from me

Glad you're home with your family Planned. Try to rest and just sit with your girls and watch CBeebies and Disney films. You may be out of hospital but you're in early recovery so rest is essential.

Do you have a Macmillan Nurse or other palliative care nurse who can come and talk to you? I know I can call on one if I need to.

Thanks Ranout, I’ve been here before 3 years ago but it was just a fibroadenoma (which I chose to have removed). I went myself for both the initial clinic visit and results, but that’s because I was sure it was nothing, and so was the consultant - this time feels different though.

I could have SIL watch DC and take DH with me, SIL is an absolute diamond and has offered to do so but she’ll have just gone back to work after 3 weeks AL so I feel awful for her having to take another day off just for that.

Sorry your PIL are so rubbish! I can honestly say I’m so lucky with our families, they have their moments but are all supportive. MIL is having a biopsy next week for suspected lung cancer, so next week could be hard for my DH ☹️

So sorry Planned

Have they told you when any treatment will start? Or what they can give you?

Glad you are home it's the best place

planned I'm so sorry is there anything they can do to help with the stomach symptoms? Have you met the palliative care team? In my experience they are absolutely amazing. I hope that they can get your symptoms managed and keep you comfortable so you can make the most of time with your lovely girls. I know that's just not enough. You have been dealt the shittiest of hands here. Scream and swear and cry if you need to. Ask for whatever support you need and accept any offers of help.

You must be reeling right now. Is there anything you need that we can help with? I've got an iPad and plenty of time on my hands so I'm happy to Google things or anything like that.

A couple of things that might help...

I don't know exactly how old you are but if you're under 40 then you can apply for a "special day" from Willow Foundation

Also you might find Shine Cancer support helpful. There's a Facebook group and sadly there are others in your position.

purple I hope you slept well in your own bed :) I was due to be discharged after a similar time but then started throwing up so they kept me a few days longer

Waving to everyone

I've been for a swim in the sea. It was lovely. I gave in and bought a wetsuit to wear to protect my lungs a bit from the cold water. I find it so peaceful bobbing about in the waves :)

Sorry for butting in. I did post about my husband on the last thread. I wanted to say Planned I am so sorry to hear your news. May I just interfere and say now is the time for a second opinion and to get yourself in front of the best people. I have no idea where you are based but if south then track down the colorectal oncologists at the Royal Marsden. If North then The Christie. When the cancer is this advanced they either say “palliative only” or you get in front of the guys, not the registrars, the professors, at the research hospitals and they get very excited and then they start looking at trials and slightly different drugs. If you can’t see them on the NHS, make a big song and dance and get your scans on a CD and if you can afford to then contact their private secretaries and beg for an urgent appointment. It’s likely to be about £250 and May well open up a whole avenue of new treatment options. I speak from experience. I send you and everyone all my best wishes.

Luckily I haven't felt sick at all and I slept surprisingly well although I didn't dare try to turn over and slept on my back all night. I'm still a bit squeamish trying to clean it as it's still bleeding a bit. Leslie do you use wipes to clean yours? (Please ignore if it's too personal) The nurse said to use wet toilet paper but it seems rather messy so I was wondering if baby wipes would do the job? Also do you know where I can buy the sacks for them? It's like black nappy sacks that I got in my starter kit but can't seem to find any black ones online

Hi MrsRhod and fantastic news on your 4 year check although sorry to hear about your friends husband. When I was in having my stoma fitted there were loads of posters and leaflets in the hospital about bowel cancer support groups so hopefully there's stuff like that near him too.

There's been plenty of crying Noodles, mainly at the beginning when I was first diagnosed. I've put my practical head on since then so I tend not to cry unless people are really nice to me, especially the nurses in the hospital. Amazing people they are, even when I go in with a pretend smile on they know when it's bothering me
Hope you're not feeling too sickly and tired today

Planned I'm thinking of you and hoping they can blast it with some powerful chemo

Purple-our stoma nurses are amazing and they have lots of goodies and trial packs to find something that works for you. I remember one of my patients who had a stoma(can't remember which one) and she used dog poop bags as they are black, thick and cheaper than nappy sacks plus most are scented.
Have you been given an online store to order your stoma bags from? I know the catheter online supplies that deliver my grandads catheter bits provide free wipes and black disposal bags with each order.

Eagle-invasive ductal with inflammatory presentation, hormone negative but the other part positive(her, hrc I can't remember)

I'm really tired Today,I went to town yesterday after consultants appointment and then my bloody mother came over for a few hours so maybe I've over done it. Had a 3 hour nap this afternoon and apart from the odd spot of pain from my port I've been ok. I've got oramorph should I need it to get through the night.

Fasting does sound interesting. I seem to be tolerating this chemo ok,cycle 3 is when they add another drug so I'm worried I will react to that.

purple don't use baby wipes. You can get special adhesive remover wipes, which I buy to take camping etc as that's easier than the spray. But normally I use gauze wipes that I get free with my deliveries, just with water. Anything else might irritate the skin. If you don't have any of the gauze wipes then I'd probably use kitchen paper rather than loo roll as it's less likely to disintegrate. You should get the disposal bags free with your deliveries. If you haven't already got a delivery set up then I expect the stoma nurse will arrange that when she visits.

I use Fittleworth, as recommended by my nurse. They're not affiliated with any of the product manufacturers, which the other delivery companies are, so they won't push a particular brand of product. I've found the customer service absolutely excellent. They phone me every month to remind me to place an order. You can do it by phone but I just do it online and it takes about a minute! They were so helpful when I had an allergic reaction to my bags and sent me lots of different sample bags to try. And they give me free gauze wipes and disposal bags with every order. I like to use two bags just for extra security so I also use a normal nappy sack then put that inside the black bag.

Pandora I hope you sleep well tonight

Goodnight everyone. I'm lying in bed listening to the waves and sending good wishes to you all

@EagleRay I hope you don't mind me asking what did you eat:drink for the fasting. I'm looking at research and coming up with different ideas. I start chemo on Tuesday but we're away with the kids/beasts this weekend (although beast number 2 has been vomiting all day!).
We're booked into a seafood restaurant tomorrow and my kids (4&7) know we always go there on hols. So I I'll have seafood and salad and then I'm thinking trying to go liquid, water, herbal teas, miso soup till 24 hours after chemo. However if I feel lightheaded I will probably cave and have some steamed green veg (which I actually crave!)
So, that's enough about me at the mo. Ladies I think your all amazing and I don't know what I'd do about this group.
@plannedshock I hope you are with your family and your medical team are supporting you

@pandoraslastchance - HER positive it sounds like. It's less common than ER+ (I'm ER+ and PR+ which I think is normally written as '++-'. A friend of mine has had HER+ BC at roughly the same time as me and so we've been comparing notes on treatment. Your chemo regime sounds a bit different to the one I had - just make sure you rest up and don't ever second guess any symptoms (I've heard healthcare professionals can be bad for this!)

@plannedshock - I've been thinking about you all day. I hope you are at home and comfortable x

@ranoutofquinoaandprosecco - I don't mind questions at all! I basically tried to avoid eating anything but probably ended having a few calories here and there (I'm guessing around 100 cals a day). Also, I continued to drink tea and coffee with a tiny bit of milk. I don't really remember feeling that badly affected by the fasting but I've been doing 5:2 for years and also had done the blood sugar diet so am used to calorie deprivation (it was thanks in part to the blood sugar diet that I discovered my cancer but that's another story!)

I would test the waters in this round, see how you feel about fasting and note how you feel after chemo. Bear in mind that you may adjust to side effects in later chemo rounds anyway. If you are on steroids from the day before chemo they'll be keeping you 'busy' and then the day after you can treat yourself to a nice meal somewhere. I became quite ritualised at dining out for my first post-fast/chemo meal and never had nausea or sore mouth enough to be put off eating! One other thing I should point out is that during chemo I swung under my regular weight by about 4-6kg and then put some of it back on after fasting, then would lose it again. I was the lightest I'd been in years. Then once chemo ended (last cycle was at Christmas) I went a bit mad on the food front and couldn't stop eating. We went on a little holiday in the UK in the new year and stayed at a nice hotel. I can remember locking myself in the bathroom and sticking my face in a big tin of Quality Street and could not stop eating them. It was bloody heaven and I have fond memories of it. Why my body was asking for confectionery I do not know!

@whatwouldleslieknopedo - hearing the waves at night is amazing - I can't remember the last time i did this! hope you enjoy your holiday.

Morning lacies!

Feeling anything but lacy myself - more like a ball of lard. On a whacking dose of steroids, and now even my elasticated-waist trousers are too tight. It's not even purely vanity - it's uncomfortable, & I can't afford to keep buying new clothes.

Moan over

planned I've been thinking about you too: hope you've been given more to go on and are feeling more supported

I'm off on holiday tomorrow too, so will probably be offline for a couple of weeks. I'll try and check in, but I do like to unplug when I'm away. I'll be listening to the waves in bed tomorrow night, too!

Love to all