Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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Thanks for the painting story Top Shame you didn't get your £3 million. I love the baron bigod cheese. Got DH a selection of fancy cheeses and chutneys etc from Rennet and Rind for his birthday and that one was my favourite, a lovely brie. Now we have no kitchen we are eating things like brie on a ploughmans and the President one is so bland in comparison. However, Floof loves the gold ball you can make from the wrapper. It is so much better than the silver ball DH through him. 😻

I also did not wait long for radio, maybe 5 mins each time, chemo and general appointments could be waiting up to 2 hours but radio was very efficiently run, the rest I used to try and get an am appointment before the delays built up. I also have a lot of numbness but pretty much no pain. I have this weird thing atm where with my insomnia I get like sleep paralysis as well where I am all floppy and can't raise arms etc. I am the world's worst sleeper but I seem to be able to function without sleep at least.

through should be threw

Hi all, just checking in. Two more treatments to go with the radiotherapy. I’ve found it easier than everything else, just a bit tired. They have given me some cream called epicyn which is brilliant. Twice a day and so far my skin is ok. I recommend it for skin and scars!

Bit of a shit day yesterday, on my way to finally get the stitches out from my right side, I stopped at a roundabout because the trainline level crossing barriers were coming down (and because you stop at roundabouts!) and a bloke in a van crashed into the back of me. I just had a total meltdown. As if I haven’t had enough things go wrong!

Stitches are out and I’m healing well. Bloke in van has taken liability. But this morning it’s gale force winds outside, it’s 11am and I’m still in bed. It’s freezing! I miss the UK! Melbourne sucks! I can’t sleep either!

@TopOfTheCliff great story!

Trying to work out jobs. But I think I need a bit of time to hopefully process the shitstorm that is cancer land. I just need a couple of months plain sailing. Keep your fingers crossed for me.

@FairyWren7 what a day you had. Fingers crossed for the plain sailing.

Thanks for the story @TopOfTheCliff - reminded me of Del Boy and Rodney with the watch!

Morning all,

Sorry to those who are struggling, it's all a bit shit sometimes 😢 I agree that talking helps - I rant at my best friend quite often. Her dad says so long as I'm having a moan or rant, I'm doing fine, so to keep doing it 🤣

I'm on chemo 17/18 today. The end is in sight! I cba to actually remove myself from my bottom to get sorted just yet though. I will, eventually.

College seems to have gone well yesterday for dd1, school not so much for dd2. They're being extra difficult about uniform expectations 🙄🙄 I've bought dd2 trousers that fit properly rather than her wear theirs which need hefty alteration (think massive chunk out of crotch area). They want her in theirs so suggested we swap them for the next size down. The legs of the ones she currently has from them are tight as it is, smaller size will give her no movement and probably still need the alteration (she's a size 16ish and short - these trousers are certainly not designed for the more rounded child). I could alter them myself but it's a hefty task & honestly not worth the time it'd take to do it imo when she already has "mid grey trousers" which is literally all the policy states. I am eyerolling SO much!

@SummerCycling - it wasn’t me with the Degree, at best I have a Diploma in Cancer, and hoping not to progress to further study! (Likely to be a fat chance!)

We could award ourselves levels of attainment in this crappy situation. But is a First a good or bad result?

Interesting to hear about the post treatment slump- that could well be me - been pretty strong throughout. Even with extended family stressors (posted before, won’t bore you all).

Great story @TopOfTheCliff . Hopefully karma exists - but true - money doesn’t buy happiness.

Seeing Oncologist later…joy…

I’m in UK - hope others in similar time zone have a good day, and if not - that you had a good day.
Xx

I've just had a trouser related realisation - I think they may be unisex trousers so have crotch space to accommodate male parts. They're upstairs so I can't look at the label right now but that would explain why so much bunchy-up fabric that isn't needed. Anyway, there's nowt up with the trousers she has!

I made the masters comment I wonder what kind of cap and gown we could design and what graduation celebration we could have?
I'm watching all the school uniform threads with horror😱 my son starts secondary school next year and has a genetic growth disorder which means he is small for his age. I'm worried that the school blazer won't come in small enough sizes for him without some drastic alterations. Shoes are also going to be an issue as will the styles that the school insist on come in small sizes?
I won't be buying him a pair £100 designer shoes!

This is the first year I've had trouble with uniform, over both girls! Previously, supermarket stuff was fine, or the stuff from the school supplier in town. The stuff from town is quite reasonably priced too imo - I know some aren't.

She's announced this morning that she should have had black trainers for PEE (the extra 'e' is intentional, PE is known as PEE in our house - none of us apart from their dad are remotely sporty!). They've never enforced it so much but they have their eye on being "the best school in our town".

Imo, attention would be better spent on those children who disrupt & very clearly need the extra support, rather than the one who get sent home for no school bag, but has pens etc in a pocket, or whose skirt sits above knee because they're tall (they're from the supplier in town & the kids & parents can't just pick one that fits length requirements any more to avoid problems). But, what do I know 🤷‍♀️

One of the schools has a much nicer uniform - it's a proper suit style, so much better cut blazer jacket & trousers & the kids all look so much smarter in it.

It's really annoying me, can you tell 🤣🙈 I'll be ranting away about this for days now!

Anyway, I'm fairly sure they have to make reasonable adjustments - if the uniform won't fit, it won't fit. They can't force it to. I do know, if you make a special request to Girlguiding, they'll have a specific sized uniform made as a one off. Not sure whether the same would apply to schools maybe.

Graduation cap needs a dangly 🖕 rather than a tassel! And, clearly, cake needs to feature somewhere.

The BA cancer gown is made of the blue paper they use for drapes and the hood is lined with hospital gown fabric.

🤣 I'm not very good at sketching but might try and draw it out over the weekend if I get chance. I've drawn clothes on my next set of peg dolls (Each, Peach, Pear, Plum) ready to paint so maybe in between coats.

I love Each Peach Pear Plum!

My (real) PhD gown was made of approximately 100m of heavy black polyester, and I had to wear it on the hottest day of the year. I feel that this arrangement would be quite appropriate for the Cancer PhD, at least for breast cancer, as it felt quite a lot like a day-long hot flush.

The Cancer graduation ceremony would have its date changed twice and there would be a long wait at the entrance. No companions would be allowed in and they would have mislaid the ceremonial mace and there would be stewed tea and biscuits in little plastic packs afterwards. Several people would fail to attend.

Has anyone in the UK bought the Duraphat toothpaste online? I’m struggling to find an online seller with good reviews.

Yes and at the ceremony they would tell you there's actually another 2 years treatment to do whilst producing 4 pages of side effects and telling you to sign. And you need another scan before that. Then they rush off to deal with a half dead patient on a trolley and tell you to call the breast care nurse if you have any questions.

At the Graduation ceremony you need to wheel a chemo trolley beside with your best arm - your certificate can be pinned on it.

They also tell you at the graduation ceremony that they've found some flaw in one of your assignments that's probably nothing but you'll need to undergo more tests and waiting for results before you actually graduate.

And they serve really shitty juice. Apart from the pure orange cartons which are absolutely amazing.

However, they will leave one small jug of water out for 8 people and any replenishment will take three hours to arrive.

They will then give you a bollocking for not drinking enough.

Oh and you will also be sat next to someone in the ceremony who wants to know your entire medical history including grade of tumour and staging. One woman I almost asked if she wanted to stick her head up there and have a look!

And your family and friends will have celebrated your graduation months ago whilst you were still very much not officially graduated and actually in quite a bad place both physically and mentally.

When do we actually graduate anyway? I've finished front line treatment and am awaiting the scan (fingers crossed) to see if it's worked. I will be relieved if it has, of course, but I imagine friends and family will be more jubilant - they already seem to think it's all 'done'. My brother in law wants a big night out to celebrate when I get that first scan results through (assuming their positive) but I definitely won't feel it's over ever probably - maybe this will change if (big if) I get past the two year then five year mark.

@ClashCityRocker thats exactly my question - when do you know you’ve graduated? I appreciate that not everyone gets an all clear. But people have asked me about ringing the bell at chemo? They didn’t have one and to be honest even if they did I didn’t feel that much like celebrating!

@lucysmam which brings me to say 17/18 is an impressive amount of chemo. The end is in sight. :)

I’m now worrying myself sick as I’m getting endo symptoms again, despite the hysterectomy. I’ve got pressure and a pain the feels like a stitch at times just where my right ovary would have been. So of course I’m thinking that’s something else on the brew. It’s adhesion pain I think, I’ve had it before. But you never know… and after my track history, Although you’d hope that the chemo would stop anything else coming up for a few months at least.

Weirdly I had a call from genetic testing from my precancerous cells in right Fallopian tube surgery at the end of 2021. I’ve since had genetic testing because of the breast cancer. So I ended up explaining what happened to them. I wonder if I had spoken to them at the beginning of 2022 if it would have made any difference. I might have had a mammogram earlier. Or at least been more alert to issues. I was just so traumatised because of having two surgeries in 6 weeks that I couldn’t have coped with anything else. I made the assumption that, that was that because my Gran died of ovarian cancer, I never considered breast cancer might be an issue too. I mean how unlucky can you be right?

It’s so cold here that both the dog and cat have been attached to me all evening. We’ve been watching Sex and the City - Samantha has just been diagnosed with breast cancer, despite it being stage one and removed via a lumpectomy she is having chemo. No mention of radiotherapy.

Happy Friday! That’s what the radio nurse said to me today!

@FairyWren7 Forgive me, I have no idea if you have tested positive for BRCA 1, 2, PALB2 or any of the other gene mutations.

Long ago, I realised it was futile (and often tortuous) to wonder 'what if' I had something differently/earlier/sooner/etc etc.

The reason I say this with regards to breast cancer is that due to family medical history (including my own) coupled with the fact I am an Ashkenzai Jew, I have been offered genetic testing for the past 15 years and turned it down flat each and every time for a myriad of reasons, but mostly because just because of all of this, even if I had the gene, I might not develop any of the associated cancers. It was only once I was diagnosed with breast cancer that I became curious and decided to get tested. Even if I would have tested 15 years ago and been told I had the gene, I would not have done anything differently. Regarding mammograms, I have v. dense breasts so all the lumps I have self-presented with have never shown on them anyway, so if I would have been reliant on them, my IDS wouldn't have been caught.

Re. Samantha and Sex & the City. I rewatched that around the time of my diagnosis and questioned all of that too. Later as well, as in both films, she's on HRT.

PS. Happy Friday to you, or as my friend and I always called it - fryday - we often have french fries in its honour!

I fell about laughing at all your University of Cancerland, Cancer Patient Studies programme Certificate, Diploma, BSc, MSc, PhD, etc descriptions 😂 You sometimes have to laugh or cry don't you.

Car parking rules for attending graduation:

Please arrive at the car park at least 2 hours in advance of your allocated appointment. There are 50 spaces to park and we anticipate approximatley 743 graduating students, so it may take up to 7 hours to find a parking space. Cars on site longer than 20 minutes will be charged for each full hour at the normal rate of £4 p/h.

No family or friends are welcome at your graduation ceremony, but we do recommend your husband / wife / DC / aunt / neighbour / take the day off work so that they can drive you to and from your appointment. As they will be driving around looking for a space for a considerable length of time, we recommend they bring adequate refreshments with them.

Arrival:

Please do not arrive more than 10 minutes before your graduation appointment time and no less than 9 minutes before. Not arriving at the specified time may lead to cancellation, expulsion from the University of Cancerland and referral back to your GP.

Waiting room:

There are chairs provided for around 30% of the number of graduates awaiting their appointments. Please ensure you are able to stand while you wait. Please note, waiting times usually exceed 3 hours for oncology professors. If you are unable to stand for up to 4 hours, please contact your cancer nurse lecturer on the following number: 029873521690136. Please note that due to unforeseen technical issues, this phone number is currently unavailable until around 2028.

Scans, biopsies

We may need to confirm your eligibility to graduate. Please note, due to capacity and staff shortages, waiting times for biopsies are currently around weeks. Scan waiting times are currently &*# then we will start trying to locate a radiologist who can read your scan this calendar year. We are not responsible for any inconvenience this may cause. There is a private hospital up the road should you fear an extended wait will pose a serious risk to your health.

2 week referrals

Our website states we see patients within 7 days of receiving their 2WW. This looks good, doesn't it. We like looking good on our website. Please note, after receiving your 2WW referrals, we will see you within a timeframe that suits us, therefore, waiting times for your first appointment may be longer than 1 month.

Complementary therapies.

Our website states that we provide complementary therapies for every Cancerland Univeristy student. This looks really damn good on our website. We are sure you agree. Due to Covid this service was stopped in 2020 and we have no idea whatsoever if and when this will be offered again. But it looks so great on our website we held an MDT meeting about it and all agreed it makes us look so caring.

Oh dear, I hope I'm not getting too bitter!!!

Chemotherapy Studies Module CLU-3

In the appointments with your oncology professor, each student will be promised excellent care such as the provision of a PICC or port at the beginning of the Chemotherapy Studies Module. However, due to registrars not booking students in, or capacity and staff shortages, we are not currently able to provide them. Should you experience collapsing veins and the nurse lecturers, despite several attempts by different lecturers, are not able to extract blood or administer the medication, this policy may be revised and the student may be provided with a PICC line 1 or 2 cycles before completing this 6-month module.

Ok I'd better stop now because I could carry on forever 😕

@doublec

I love that idea of fryday with fries on Fridays!

So funny though @SummerCycling . You're that good you can write the Prospectus too 🤣📝

Yes and to add on car parking, special car parking spaces will be available to those struggling to walk. You can get them by applying 3 months in advance and submitting a 10 page form to your local council. The ceremony will take place in 1 month. If you use one of these spaces as you cannot manage the 3 mile walk including 26 roundabouts which serve no obvious purpose from where the rest of the spaces are you will be fined £60 but this reduces to £30 if paid in 14 days.

Food will be available at the graduation ceremony but will only be served if you are there at exactly 12.06pm. This will be manky sandwiches and tea left too long. If you are any other time than 12.06pm then if we like you we may tell you about the secret sandwich stash. If we don't get your own. If you ask we may or may not let you have a manky sandwich, depends on how we are feeling.

Graduation certificates will be attached by cannula which will take at least 3 attempts and 2 different nurses. The first one will have never had a successful cannula attempt before but needs to train.

If any of you who have BC haven't already had one, apply for a Little Lifts box for yourself. I applied a few days ago & have seen it mentioned on here ^^upthread. Mine's just arrived & is full of lots of nice little treats and bits (I'll snap a photo later if anyone wants to see the contents. I'm just waiting a lift to head out for a bit). You do have to upload proof of diagnosis & ID but it was really fast to arrive & I'll use most of it (not sure about crosswords though if anyone would like the book that's in there?).