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

[LemonDrizzle10]

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@Crimsonbow I'm on daily inhixia (enoxoparabin) injections for blood thinning injections - six months worth! Hopefully on my last month now.

Some days hurt more than others. Apply pressure afterwards but don't rub or it'll bruise like buggery. Sometimes no matter what you do it bruises anyway. I found towards the love handles least painful.

@Crimsonbow re injections - probably very different but many moons ago I had to self inject whilst having ivf - the easiest and less painful area was my tummy - alternating sides - only other thing was checking I had the right needles as after I went to practice nurse apologising for whimping out of doing them after first couple were really painful she realised the needles provided by hospital were way too large and that was the main problem , after that was sorted it was fine.

doublec thank you . I have a follow up shortly - one of the things I want to ask which sounds stupid is having read the leaflets they gave me is "what is a lump?" - mine was discovered on mammogram only but now 3 months post radio I can feel a lump/thickening in my breast - I guess it's everything settling down after surgery but don't want to assume ...

Sorry, I've got a bit behind with this thread cause I went away for a night to attend my best mates Mum's funeral. Got back quite late last night.

@Crimsonbow hope you are recovering well. Glad you had a nice anaethetist.

@TwigTheWonderKid that's good news

@lucysmam I'm not surprised you're pissed off. I know what you mean about the phone thing as well. As others have said, on the plus side you have no symptoms of hear failure.

I haven't got long to go till my op now. I'm going to the hospital to have whatever it is that's to be inserted into my boob this afternoon. I've got a cleaner starting this morning. Struggling to sleep at the moment cause of the the worry and also cause of hot flushes, I'm not even taking the anti oestrogens yet, hoping that I wont notice much difference if this is what its like now. TBH I'm kind of scared of not getting back to normal which I know I wont fully, all it took yesterday was someone mentioning someone yesterday who has been through the same thing and now gets tired. Scared I'm going to turn into an old lady. Sorry this sounds indulgent after what some of you have been through, think I'm in denial about long term effects.

@SummerCycling that's a really helpful post thank you. I think I was just in a strop about the whole thing & the travel to a different MRI was the last straw iyswim.

Yes, they said it's not pumping as well as it should - no numbers or names of anything given to me though.

I might do as you suggest & call my gp, see if we can talk it over.

On another note; occupational health phone call pissed me off today. They booked for 12:30, I leave work at 1 - they're not going to pay the extra so that was a waste of time. It wasn't for a chat - she wanted alllll my recent medical info, and to ask stuff like can I put myself to bed, use the loo, wipe afterwards etc. Then to share that info with someone else entirely who I have never heard of. Why does going to bed impact school? Or who my consultants are? I'm not happy at all with being told it'd be a chat to see if there were any useful changes - not quiz me about whether I'm bloody disabled or not then share with yet another stranger to decide whether I'm ok to be there - I'm fairly certain my oncologist would have said no had she not felt I could manage. & what are they then going to do - go against her advice as the medical professional? I fed this back to our admin lady who didn't quite know what to say 🤷‍♀️ then stomped my way home after finding my fave colleague for a cuddle.

Aaaannd, I have caught dd1's bloody cold! It's just not my week 🙄

@Octopus45

Hope your appointment this afternoon went well.

Thank you for the injection advice. I'm home and I managed my first one yesterday evening. DH was all "I want to help" but then he audibly squeaked when he just watched me do it 😂 so think we'll stick to him passing me the stuff and making sure the kids don't come near.

@Octopus45 everyone is on a different path, it's completely okay to feel how you feel. How'd it go yesterday?

Hospital didn't send me home with any pain relief so I've just been doing ibuprofen/paracetamol but I have woken up in more pain than I've been in yet 😔 whilst it's mentally lovely to be home, the set up just isn't as good for me physically as hospital.

@lucysmam I can see how that's upsetting; it's possible that she's asking as may suggest pip? It sounds like pip style questions- and you can still work. It's just an extra benefit. Ive always found oc health a bit unnnerving but they really are trying to fight your corner.

A friend who has bowel cancer has been granted pip. She's hassling/ encouraging me to do the same though it's more because of a number of other conditions that can conspire to floor me cfs stylee from time to time. It feels wrong though. However, it takes a lot of effort for me to stay functional so might be worthwhile.

@Ikeameatballlunch Macmillan did a PIP claim for me way back in May so I don't need them to do it or suggest it. It's more the way it was sold to me as "a chat to see if we can make changes to help" then she wanted everything, and the booking it during work time - but not enough time.

My consultant referred me to Macmillan (but I cannot remember the specific name for the department - that's the wrong word too!) & they literally rang to ask for bank details & my permission to submit the PIP form for me - I didn't set eyes on any forms at all! I wonder if your area might have the same sort of service?

I think I'm just the wrong way out this week after Monday's appointment put me on the back foot. I've cancelled going shopping with my friend today so I don't put my foot in it & get grotty with her, that wouldn't be fair. I'll spend the day wafting about here & have a nap at some point instead.

@lucysmam please look after yourself, sounds like you've had a rough week.

@Crimsonbow hope that your pain improves. I went to the hospital yesterday and was told that they didn't need to insert a tracker after all cause my lump is so palpable. Just done a covid test for tomorrow, thankfully negative. Trying to finish my work and catch up on lots of bits before tomorrow.

Thanks @Octopus45 . I'm having a very steady and nothing much kind of day. I'd run a bath but I'd need to clean it first & just cannot be arsed right now to do that 🤷‍♀️

I think some reading & crafting are on the cards...but first a nap when the washing's done. Hopefully my mood will improve by tomorrow - I'm supposed to be going to see a local band with some colleagues.

Is there any chance I can join?
Been a lurker for a while but thought I'd message.

Chondrosarcoma of the skull base, had surgery, a stint in the ICU for complications and waiting on proton beam therapy.

Generally pretty positive for my kids but hard not having anyone who fully understands!

Pull up a pew @rhianjayne 🙂 & welcome to the thread none of us wants to be on. You'll find the best, most supportive, bunch of people here...they'll baffle you with science sometimes though 🤣

@lucysmam Thankyou! Highly likely because science is not my strong point 😂

Welcome @rhianjayne to our well appointed suite of helpful rooms. There is the Patience Inn where every drink requirement can be met and a virtual tea party on demand. There is also a rage room where you can smash old crockery if you need to let off steam.
It must be hard to have a rare tumour with nobody to compare notes with. Or is there a group for this? I have been spoiled recently with Breast Cancer support but it’s not equal for everybody.

Hope you are chilling @lucysmam you deserve it!

Hi @rhianjayne and welcome. I am a relatively recent joiner too but similarly haven't found anyone to compare notes with yet but have found the thread very supportive and helpful even though.

https://www.bbc.co.uk/sounds/play/m001s5jm?partner=uk.co.bbc&origin=share-mobile

I heard this programme on Radio 4 yesterday and it was very apt and funny.

Was at the breast clinic today, for the results of my large volume biopsy.

They found "atypical cells" which "might be indicative of malignancy". This basically seems to mean that after 3 minor biopsies, a large volume biopsy and several mammograms and ultrasounds they still don't know what is going on.

I'm now booked in for a lumpectomy on 23rd November. 2 weeks is nice and quick. It's meaning we have to cut short a visit to our second home in the outer Hebrides at both ends nds, so I have pre-op and mag seed placing on Monday, and then surgery when we get back. We still get a week away and hopefully the surgery will give a definitive answer. The surgeon said today (with many caveats) that she expects I'll need some radiotherapy and possibly hormone treatment. She's a fantastic down to earth, no-nonsense woman which I really appreciate in a doctor!

@lucysmam

I'm happy to hear you found my post helpful.

I really think they should have explained to you why they want you to travel somewhere else for the MRI instead of just telling you you should go.

Of course I can't know for sure, but I suspect one reason why you felt so upset this week with the medical professionals is because of their lack of communication skills. They seem to have got symptoms written down that you haven't got, they phone you while you're at work, they ask you questions you weren't expecting and which upset you. That could all have been prevented with better communication from their side I think. I'm sorry you've been going through all that extra stress, it's not fair.

The occupational health, is that connected to your school / county council? Or is it connected to eg the hospital? I agree with you completely, I'd have been very shaken to have been asked questions like you mentioned, especially without them explaining why they were asking them and the fact that it was all over the phone. Not to mention, during your work hours and the person didn't know your medical history. Did they tell you why they were asking and who asked them to phone you?

Maybe it's standard procedure, but I wouldn't know and would have been upset too. My employer hasn't called at all, I just updated my two bosses now and then by email and we decided between the 3 of us when I'll start back and for how many hours. Nobody asked me about anything personal. I wonder if they will once I'm back; I am wondering now you told us what happened to you.

About the heart echo, you have every right to ask for the report. In all my (many) heart echo reports it always gave the LVEF percentage result, and also the GLS whenever they could see enough to calculate it (that's strain and apparently a very useful thing to know, but my lungs got in the way!) I did have to ask the hospital each time though, they never showed me the report otherwise. I was also put on blood pressure meds during chemo.

About PIP, there's nobody at my local hospital to help with anything, but after reading on these threads I learned of the existence of PIP. I did actually fill in the form (took forever) and got quite far with my application, but then chickened out at the very last minute. I do have contribution based ESA though, because I knew I was 100% definitely entitled to that.

oh, what an essay 😳sorry, it got a bit long 😂

@rhianjayne welcome! I'm happy to see you've decided to write rather than just lurk. Sorry to hear your situation makes you eligible to join us here on this thread though.

It must have been tough needing to be in the ICU after surgery. How is the recovery from surgery going now? It sounds like your next step is the proton beam; I hope you don't have to travel too far for that.

These threads move so fast it's hard to keep up.

@isaxx I'm sorry to hear your thyroid is giving you additional totally unwanted stress and really hope it turns out ok. So terrifying, waiting to find out things like that. I hope they get a move on with the results.

@TopOfTheCliff I have found a few sarcoma groups but they are all treated so different, like mine doesn't respond to chemo and it's high reacurrance, which is why next steps is proton beam, they are confident they got most out in the surgery so pretty hopeful.

@SummerCycling I'm feeling much better now, still have some double vision but it can go hours without noticing it now, it was awful straight after surgery. It defintely wasn't ideal in the ICU, I didn't feel to bad but my sodium levels dropped low enough that they thought I might need life saving measures.
I'm lucky to live close to the Manchester Christie so not to far to travel.

Thankyou everyone for being so welcoming 🥰

@TopOfTheCliff I've had a very chilled day - done nothing apart from crochet & nap. I'm just about to have a look at my new Christmas baking book & order some fresh yeast to finish it off.

@SummerCycling yes, I think the lack of communication is the main culprit here! This whole week could have been a lot more pleasant if I'd known what was coming instead of being "blind" . That includes work too - it's HR who requested the occ health referral & passed it on through our poor business manager, who I will apologise to tomorrow for being grumpy at. She should really know what she's asking folks to consent to though.

I was told it's to see if there are any helpful changes that can be made at work. Fair enough but if I couldn't manage the loo on my own, they're harldy going to have me as a 1-1 for a small person who is a million miles away from being able to use the loo himself 🙄Those questions aren't helpful to them I don't think - just intrusive. The same as her comment that "it's to help decide if you should be deployed elsewhere or you're ok to be in work". Surely someone actually involved makes that decision, with me, not someone paid to tick boxes to make for me, after it's been ok-ed with several (more qualified) professionals.

Until now I've just been keeping our HT and business manager up to date, and was happy to do so. I have no problem doing that, I do have a problem with being told I'm being assessed so someone else can make decisions for me and without my involvement. That doesn't sit right when I'm fully aware of what's going on.

It also annoyed me that I can't not answer questions if I don't want to - you have to do them all! How do I know until it's asked whether I'm happy to share that info or not 🤔 <brushes off mind reading skills>

I might make a total pain of myself & ask for copies of everything so far so I can sit down & correct their errors (definitely some on the amount of fluid drained each time, seem to be some about symptoms too which I would have had no idea about if it hadn't been for Monday). I wonder what else there is 🤔

It seems I've written a moany essay in response 🙈🤣

Re PIP - it was Meeting New Horizons who did my form. Maybe have a google for them & your area? It was literally a 30 second call & I heard back within 2 weeks.

I hope everyone else is doing ok!

Hello @rhianjayne

Seen oncologist today

Going for another scan to assess if radiotherapy is safe, I’m right on the limit for what is a safe dose as it is a big area to treat as lymph nodes affected in both lungs but they’ll push it as much as they can. They’re going to treat it "very aggressively"

That will be hand in hand with chemotherapy, so 4 days radio and 1 day radio and chemo, per week for 6 weeks, then a break then another cycle - Paclitaxel and carboplatin, whatever that means

Wide range of side-effects I won’t necessarily get them all tho. The main issue is the inflammation of the oesophagus because the radiation is across the whole chest. That means it might be difficult to swallow so I’ll need a feeding tube.

Other things are things such as tiredness, infections, blood clots, pins & needles and so on, though I will have a number to ring if there is a fever or any concerns. They will give me an anti-sickness medication.

I have been referred for a wig as I will have hair loss, tho he cheerfully told me I’d probably not lose my eyebrows…. not really seeing the blessing there

Tests show a G12C mutation so immunotherapy would be suitable, and there could be 12 months of that either after the radio and chemo, or if I can’t have radio then alongside the chemo

Am trying to be positive but images of nails dropping out and liquidised Cmas lunch...