Cancer support thread 91 - don’t borrow tomorrow’s worries

[LemonDrizzle10]

New thread

@TwigTheWonderKid
Great news!
@lucysmam
I shall join you in being totally pissed off with everything
Phone call from unit today, as expected came at the most inconvenient time possible
They said "mid to late afternoon and rang at 12.02
Yet again the call felt rushed
Every answer was "we don't know yet" answered as if my questions were the most obscure and irrelevant questions ever.

She was also nonplussed that I've been on the macmillan website and chat bot. Apparently I should wait for the local team to contact me.

Then it was "Oh by the way we've referred you to university hospital team, who have requested an MRI, goodbye

@HohiyiKozbevi
Would little bits of food help? Eg. A selection of nice pre-made sandwich but cut a wrapped into quarters in fridge ready for you.
Baby bel cheese, they're little and munchy
Cereals are easy and quick
What about flapjacks?
Or yogurt?

Sounds incredibly frustrating Lucysmam! I've had the opposite problem of radio silence for months but I don't necessarily have cancer I guess.

Great news Twig!

I had to wait till 2pm to go down for surgery and that was torture. Everyone else in the waiting area had gone and they'd told me to put my gown, pants and socks on at 8am! I took heed of the advice on here and had a little weep but then a little walk and sorted myself out. Thank you for your wishes everyone, especially when I've been quiet on here/pretty new.

@Octopus45 the consultant came round first while I was waiting and was very, well, consultant like. The anaesthetist couldn't have been nicer though to reassure you! I have a very vivid memory of projectile puking after surgery as a kid and he talked me through my options and explained everything to me. I decided to have an epidural for the pain relief as he said this was the best option for not adding more nausea on top. And he put anti sickness stuff into me too. Touch wood, no sickness yet. I forgot and coughed last night and that was so painful so very glad to have not thrown up.

At the time of the op, they took me down to the anaesthesia room first and both anaesthetists were lovely. Again had a little cry but the last thing I remember is thinking about my kids on the beach (as suggested by one anaesthetist) and the other telling me in the softest voice "we're going to look after you." Gosh making me weepy now thinking about it.

Night 1 in hospital wasn't too bad. I'm in the gynae/maternity unit though and it is SO HOT! I've basically slept naked with a fan on me 😅 got a 4 bay ward and everyone seems quiet enough.

@Crimsonbow glad it went ok. Anaesthetists are so lovely, aren't they?

@HohiyiKozbevi definitely little and often. Also your taste may have changed a bit so maybe try some different foods. You should also be able to get a prescription for Fortesip drinks which can give you extra calories and vitamins etc.

@lucysmam sorry you're having a tricky time. Hope you are feeling a bit better about things today.

@TopOfTheCliff hope your feet bother you less today. As well as Voltarol, I've been using the Gold cream recommend for diabetics which has worked well for me.

@TopOfTheCliff from what they've seen, my heart is not pumping as well as it should be but they're struggling to find the cause & with no symptoms he couldn't really tell me much 🤷‍♀️

Interesting you mention water tablets - he's prescribed spironolactone, dipagliflozin, and bisoprolol, and then ramipril I was already taking. I don't have diabetes & don't need the water tablets but when I queried why the two extra, he just said they work well together 🤷‍♀️

@HohiyiKozbevi yes, you're most likely right about it being based on men...every bloody thing is.

Would you manage milk shakes or smoothies maybe? Sipped at rather than down in one iyswim.

@Unex it's so bloody frustrating, isn't it!? The whole "take what you're given & don't query any of it" thing does my head in. I'll be ringing round & altering things if they didn't listen to my request - I don't see why I should put my life on hold when I have a job & things to do as much as they do.

@Crimsonbow glad to see you've been well looked after! I've been on the gynae ward both times I've been in locally - always exceptionally warm 🥵

I think no contact would be as annoying as too bloody much of it! I speak to medical folks as much as anyone else in my life at the moment it seems.

@Crimsonbow , really glad it went ok and you had an anaesthetist who listened to you. Here’s to a quick recovery and getting back home soon 🏡

@lucysmam , rant away! It drives me mad as well that no medical professionals seem to understand that we have jobs too. The NHS particularly expects us to drop everything at a minutes notice and then be grateful.

@HohiyiKozbevi on the food, I had times during chemo that I really struggled to eat. Try things that are calorie dense and don’t need much preparation, protein bars, full fat philly on toast, ice cream. If you’re really struggling get some ensure or fortisip to keep your nutrition up and treat it like medicine to be downed. I struggled with my taste buds completely changing, and ate lots of sweets, really sour ones. For some reason they were the only things I could still taste. Healthy food is great, but in the short term it’s important just to get enough calories to help your body through 🤗

Have you got a nutribullet @HohiyiKozbevi ? When I needed to keep weight on I was making a lot of almond milk smoothies with almond butter, seeds, banana, cacao etc. i could get about 500 calories in one of those, it was based on a Deliciouly Ella protein smoothie. I was also just whizzing up an iced coffee but with a tablespoon of almond butter in.

Hello to everyone and welcome to newbies. I have been trying to read as many posts from threads as possible whilst wrangling DS through start of year 11 and now mocks (primary school was sooooo much easier).

I am another Bc er+ pgr+ her2 - Invasive lobular diagnosed at start of year, had lumpectomy in left breast and SN removal - luckily they were all clear. Had radiotherapy in summer .

I was on Letrozole for a few months - had hot flushes, sleeplessness, joint pain and really swollen legs - not sure if joints and swollen legs could be attributable elsewhere - heat / being overweight - so hard to know. Anyhow oncologist swapped me to Anastrozole - I still have the hot flushes - perhaps not as much , whilst joints not so painful left hip has become painful - is this the drugs or just something else ?

@HohiyiKozbevi have you thought about the energy drinks like fortisip and ensure? My MIL has two a day on top of her normal (inadequate) diet as she is malnourished. It’s partly due to her preference for cheap ready meals she shares with FIL. I keep trying to get her to eat protein but it turns out she doesn’t like meat.

Hello, missed the new thread. Thank you!

I'm having radio therapy this week for my boob.

Does it cause loose bowels / diarrhoea if in treated breast?

I've upped thyroxine too so could be that or the extremely mouldy Stilton yesterday. As in, oh this is probably actually rotten! 😬

The thread's not even new any more but I don't think I've managed to post yet on this one. BC, hormone positive HER negative, lumpectomies plus lymph clearance in June, one side was clear but they found more cancer plus DCIS on the other. So chemo now and then mastectomy with probably TUG reconstruction to follow.

@lucysmam sorry to hear it was all so annoying. Hope work is going well though.

@TwigTheWonderKid fingers crossed for that good news to continue 😊

@Crimsonbow hope you are recovering okay 💐

I'm very behind with these threads. Sorry 🙁

For myself I'm now 5/6 done with chemo, one more docetaxel to go. First docetaxel wasn't too bad but second absolutely sapped all my energy. But ONLY ONE MORE 🥳

Then it won't be too long before I get dates for the next surgery. I know there's a long way to go but I do feel like I'm making gradual progress nearing the end of chemo. Wish I wasn't so knackered tho.

Does anyone have any tips for blood thinning injections post surgery? The one they've given me was the most painful of all the bits I've had done! And now they've told me I've got to take a month's worth home. No idea how I'm going to manage to inject myself.

Lucysmum, I’ve had MRI’s in 3 different kinds of machine. The first one was the horrible cigar tube kind. The second one was an open one that I travelled 300kms to use as I was never going to go back in the first type. Then the 3rd one was one I sat up in. It was like a giant arm chair and I travelled 300kms for that one as well and it was worth it.

Perhaps it’s something like the above that they mean.

@BeaLola Joint pain and swollen legs can absolutely be attributed to declining oestrogen levels caused by the endocrine therapy drugs you are taking, as do the other symptoms you mention.

Although mine is ductal cancer, my cancer is also ER+, PR+, HER2-. I had also been through menopause albeit prematurely prior to breast cancer and was taking HRT which I had to stop, (obviously). In order to counter the return of the hot flushes, night sweat, vasomotor malfunction, I am prescribed a light antidepressant which has done a lot to stem them (as well as help my mood).

It is worth considering this and speaking to your MDT to see what they recommend as some antidepressants inhibit some of the ET.

How are you feeling Crimson?

As for the injections. I’m sorry but I’ve no idea. There was no way I was doing it so my sons carers who live with us did it for me. But I have heard of a partner or family member doing it - my brother did it for his wife after her recent knee replacement. They both said it was fine. He said he just pinched a roll of flesh and injected.

I think some of these injections hurt more than others. I can recall one that really burned and another that hardly made an impact. But best of all was the warfarin tablets I was put on instead after my recent knee replacement. Coukd you maybe ask for those as a replacement?

@TopOfTheCliff Does your MiL like eggs or fish? Both great sources of protein. As are legumes and pulses (although some, including me can't digest/eat them). Alternatively, feed her milkshakes with added protein powder! I do sympathise though, my father ate shit ready meals when he was being treated for pancreatic cancer and it made me so mad, more so when he would turn his nose up as the delicious and nutritious home-cooked meals I took him. (Like me on chemo, all he really wanted to eat was carbs carb carbs)

@Ikeameatballlunch To the best of my knowledge, no, radiotherapy for breast cancer does not cause loose bowels/diarrhoea, but, everyone reacts differently so maybe ask your MDT.

Also, maybe it is just the stress and anxiety of it all that is causing your stomach issues? I know when I am stressed, I always get an upset stomach!

@TwigTheWonderKid That's great news ❤️

@lucysmam Go break some china or throw something, that's a great way of releasing pissed off energy. And you're right to feel that way. Sending you a big hug and lots of ❤️

Thanks double. I asked them and nope, it's somat I ate no anxiety doesn't, if anything the other way. I've been quite bunged up while a bit hypothyroid. It's either that settling and maybe going the other way or a combo of what I ate yesterday, which was a bit fibre heavy!

May I ask what antidepressant people might take with tamoxifen? It's more if the sweating / vasomotor stuff which is wrecking sleep.

@lucysmam

I understand your annoyance. I got myself really stressed about a couple of things during my treatment. One was pretty outrageous and my local hospital wanted me to write a formal complaint to the other hospital, where the incident had taken place.

I also agree with you about the NHS acting like we don't have anything else to do, ever, other than wait for their appointments. Don't get me started on the waste of paper, postage etc with their idiotic letters that half the time end up at the neighbours' addresses with private medical info when it's already on the portal and app. I constantly tell them not to send me letters, that I can find it on the portal / app, but they refuse to stop posting me loads of letters. My neighbour brought one over yesterday that was addressed to me. About an appointment I had made on the phone with the dept plus already downloaded from the portal.

Your MRI, I agree with @SierraSapphire that they will most likely want a stronger machine for more details. For example, my local hospital MRI is 1.5 T whereas one in their central London branch is 3 T and there are stronger ones than that too. It won't be because it's open or upright as suggested by @ForfarBridie because the NHS is too stingy to pay for those unless you 'fail' twice in a tunnel MRI, plus they provide lower quality images not higher, than the tunnel MRI. I know because I was supposed to have a brain MRI in a tunnel and my consultant referred me for an open MRI but the NHS refused, insisting I should go in the tunnel; I was then going to pay myself for an upright MRI but then it wasn't needed (other diagnosis made - this was pre cancer). I am fine doing tunnel MRI for anything else though despite claustrophobia - I take diazepam, codeine and hold hands with someone outside the machine.

whoops posted too soon!

@lucysmam
Your heart echo - they say your heart pump isn't working as it should I think you said? It could be the LVEF ie Simpson's Fraction, which is a %. They like it to be over 55% ideally, or if not, then over 50%. I had heart echos pretty often on treatment because the meds I was on are notorious for damaging the heart pump (Epirubicin and Trastuzumab). I wonder if they have reported your LVEF %? Mine dropped really fast on EC chemo, but then recovered enough in time. It can sometimes recover in certain people in certain situations but that depends on various factors that are out of my limited knowledge of it all.

It does seem frustrating that they wrote you had several symptoms that you haven't got. Is your GP involved at all? Is he/ she helpful? If so, in your situation I'd ask for a chat with my GP.

@TwigTheWonderKid

That is totally brilliant news about your response to chemo! I was so happy when I read your post updating us on that. 😀🌞🙏🍾Long may it continue x

@Crimsonbow i found the blood thinners stung a lot more than the filgrastim or Herceptin for some reason. My fiendish DH enjoyed jabbing me and had a rotation from one thigh to the other and both sides of my belly. . Even though I am a doctor I would have found it hard to do myself.

@Ikeameatballlunch MIL loves Youngs Fisherman’s pie so she will eat that and a Stamford’s chicken hot pot. They share a £1.50 meal between two. They do have plenty of cake and custard afterwards but taking advice is not one of her strong points. She goes into a rage when the dietician calls! I think by 90 she can please herself really.

@AllotmentTime well done you are nearly through! Just keep plodding along and you will get there. May the last dose be kind to you.

My career as agony aunt is taking off. I am a magnet for friends in trouble as I let them chat on about their troubles. Today I had Friend 1 who has escaped an abusive alcoholic she met and married during lockdown. Friend 2 has a DC refusing school while Friend 3 has discovered her partner is dressing in ladies underwear for work and cheating on her with internet hookups. It’s great they see me as a non judging friend they can download to, and better than the telly!
Tomorrow is the Moving Forward course which I am looking forward to. I am very chilled since my retreat.
sending calm and strength to all
Top

@Crimsonbow I had to convert to blood thinning injections a month before my surgery as I'm usually on daily oral anticoagulants. My surgery was delayed by two weeks so it was 6 weeks beforehand in the end and I managed to negotiate just 2 weeks afterwards rather than the usual 4 as I was going back to the oral ones. I was so anxious and tearful for the first one I did myself, I had expected a 'tutorial' in the hospital but the nurse just said 'pinch an inch of flesh and stick the needle in'. It is a case of steeling yourself to do it, once you've done one or two, you will get your confidence. I suspect the ones you've had done for you are jabbed in from a height. I found the hard way that if I held the needle close to the skin, about an inch and a half away, it didn't hurt nearly as much. Even if it stings, don't rub it as you will then bruise. I was told to aim in the area level with my navel, start at the outside edge one side, then the other, then gradually work towards the middle with each one. This way you're not putting the needle into an area you've previously injected. You can use your thigh too if you run out of room on your front. I recall once you've done the injection, you press the end so the needle retracts into the shield thing.

If you really don't feel able to do the injections yourself, you do have the option of having the District Nurse in to do them, so you have that in reserve. Best of luck and if I think of anything else, I'll let you know.

On injections, I did the pegfilgrastim ones to myself in the thigh and it was pretty straightforward once I was shown once. My partner did the post surgery blood thinners in my arm and not sure what he did wrong but I had quite a bruise from it. My belly was unavailable due to the diep scar and no fat left there (having been transferred to my chest!). I may be prescribed anticoagulants soon to try to dissolve the (possibly lymphatic) clot un my arm. I assumed it would be oral. Didn't realise one might be given injections to use over several weeks/months.

In other news, saw the thyroid specialist today. Thyroid function normal but these wierd/grown nodules need to be sampled. Ambiguous features. So, the agony of not knowing continues. What a ride.

@isaxx I have been on oral anticoagulants for nearly 4 years now due to having DVTs in my leg. I was only transferred onto the injections because of my surgery and I think this is routine, the other ladies on my ward were having them too.

Aww thank you @SummerCycling. Its so nice to have just a teeny, weeny bit of good news. Especially as today's infusion has totally wiped me out. But I don't care, I'm just lying in bed watching/ snoozing through utterly cheesy Christmas movies.