Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

WTF looking forward to seeing your sweater! Great that you managed to enjoy an evening out.
I had a repeat neutrophil test yesterday morning so it was right up to date. I hope the injections work.

@Brassica For the dye thingy, i think they just scan you ( give you the usual hospital gown combo) and in goes the dye. Doesn't hurt and you don't really go blue. Localised it might go bluey grey and you wee turns a fabulous colour. I can't really remember much about it so it can't have been too onerous. Take arnica tablets for a few days before the lumpectomy- they minimise bruising and will help with healing. Really recommend taking tumeric to reduce inflamation and swelling post op. The breast binder is rather odd but helps with pain. The node op will give you more pain than the lumpectomy. Drink lots of water the day before the op to get yourself super hydrated. I had two ridiculously long waits before two of my ops and got very dehydrated to the point I was nearly very ill with it. Take something warm with you to the hospital. Lots of reading for the waiting.

It will be fine.

Good morning. I woke up at 4 am but have lazed in bed. I have taken my support stockings off for the final time so am pleased about that.
I'm building myself up to doing the pelvic floor exercises. I'm not even sure I can feel my pelvic floor anymore.

Brassica good to hear you had a break. I hope your skeleton look went down well at the Halloween party. Good luck for the lunpectomy.

Bridget hope the treatment goes ahead on Tuesday. Everything is crossed for you.
The hat looks fantastic. I was knitting the bunny but have given up.

Zorg hope you and your dc enjoyed a fruitful trip to IKEA. Its always so manic in my local ones. I usually only visit once a year in a kind of grab and dash way.

wtf hope all goes well on Monday and you have no side effects.
Doing everyday things feels amazing when you've not done them for a while.
The jumper sounds like it's going well. I've decided knitting is not for me

fudge Glad you have manged to make some arrangements regarding work.
Good luck for tomorrow.

As my knitting is so bad I've decided to bake instead. One of my dc has come home from their uni year abroad this week for half term. Whilst we made the Christmas cake together I told them of the diagnosis. They knew I'd had surgery but not why. They are shocked but have taken it well.
We also made brownies, fruit cakes, peanut cookies and wispa shortbread.
I'm doing well with walking but get frustrated with the restrictions on lifting. Keep having to call someone to help.

A good Sunday to you all. Think it's supposed to be sunny but cooler here, at least no rain!

Morning all.
@catnidge that must have been hard, breaking the news all over again. My DC have been very supportive, offering practical help such as driving me to appointments and phoning more often than usual. Funnily enough I have also been baking. When the DC were younger I would bake all the time - bread, cakes, fillers like flapjacks. I pretty much stopped when youngest went to uni and he graduated this year. I always like a glass of wine and some crisps on an evening but I'm not drinking alcohol much now and so have substituted tea and cake, so am baking a cake once or twice a week.

bridget sorry about the neutrophils, I would have cried as well. I have learned from all of you who have been doing chemo a while that there is very little you can do. The hat is very pretty. I was struggling with knitting so decided to try crochet. It's all very well learning from YouTube but what I really need is someone to tell me what I am doing wrong. I will persevere because there is at least one day a week when I can barely move from the sofa and lots of other time resting.

@WTF99 Is your Herceptin every three weeks for a year? I know it's only an injection but it's still a trip to hospital every time I presume? How far do you have to go? I've noticed people coming onto the chemo ward for injections while I have been there. Calling it a ward is a bit grand actually - there are 5 chairs and a room with a bed in. No room for family or friends to accompany. No room to swing a cat actually, the three nurses and one HCA are on each others toes all the time.

@fudgesmummy all the very best for tomorrow. We will all be thinking of you here at the Patience Inn. Do you know how long you will be staying in hospital? Please make sure you take an eye mask then you can shut the world out a bit. I don't know how old your DC are but are they old enough to understand that you will be fragile when you come home?

This week has been great. I had the worst day ever after my herceptin / chemo but the last 3 days I have felt almost normal. I am 20 days from first dose and my hair is drifting out. Not much but I guess it's the start. Does the hair fall accelerate?

@WTF99
Yes, stage one. Only found because I paid to have an MRI scan on my back to try and discover the cause of my long term sciatica (GP refused to refer me) best £450 we ever spent!
@Skap
My DC's are 32 and 29 so plenty old enough to (hopefully) visit and give me a hand!!

Oh and they have said 5-7 days in hospital

Skap great to hear that you have had a good week. I think everyone's hair must behave differently, mine fell out rapidly about 2 weeks after first chemo, but has grown a little - just fine sparse hairs - since then and not fallen out at all.

catnidge baking all sounds delicious, but hard for you to have to tell your DC.
Thinking of everyone who is having surgery or other treatment this week.
fudgesmummy you might be in hospital a bit longer than they said , I think I was told 4/5 nights but I was in 9 nights. Hopefully you won't have to stay that long.

Hi again everyone

I’m sure you have recovered your equilibrium again by now Bridget but I groaned on your behalf when I saw your last chemo was delayed. I’m sorry and totally get how disappointing that felt like when you were all keyed up for it. I’m willing those injections to have done the trick for Tuesday.

Best of luck indeed for the morning Fudge. I hope you’re currently feeling ok and well prepared, and that you get great care in hospital. Tell us how you are when you are up to it.

Catnidge your baking sounds great and it must be lovely to have your DS home - is it a brief visit? I hope you enjoy the catching up together.

WTF good luck for the herceptin tomorrow and I hope it’s relatively water off a duck’s back after chemo.

Emperor how are you getting on? Your chemo sounds so hardcore and I know you were deliberating over having it but you sound really upbeat in your posts! Are you finding it tolerable?

Thanks to all who gave me tips about the surgery. I’m a little bit nervous which isn’t like me really. I have had GAs before and it’s only very minor compared with you ladies having drastic hysterectomies etc so I will be womaning up and finding a grip over the next couple of days. Meercat I totally echo your irritation at people trying to rush you through/pre-empt the end of treatment. It’s very very annoying. I ‘came out’ about having cancer on fb/instagram recently and wrote a few words about what not to say to someone with cancer, and that was very much up there for me.

We went to the Halloween party last night. It was a bit weird in terms of costumes. Our hostess has told us many times how big she goes on Halloween celebration and always has a party; this was our first year attending. We were told to dress up and so we did. I did skeleton face paint on myself which was quite tricky! But on arrival very few people had adopted a Halloween theme (including the hosts) and some hadn’t dressed up at all. It wasn’t quite that nightmare of being the only people who’ve dressed up but it did feel as if we’d missed a memo somewhere!?! And it was freeeeeezing. I spent the evening with my bald head uncovered and absolutely perishing. Meh!

Hope everyone has had a good weekend. Has anyone else noticed how often we ‘hope’ things on here by the way? Is that particular to this kind of thread? 🧐

Oh and Zorgoth I’m interested to see you describe ikea as a cheap day out! Do you not find that you leave with a shit load of stuff you couldn’t resist but didn’t know you needed? It’s a cliche but so true in my experience!

Ha Brassica that made me laugh about the Halloween party - DP and I were the only adults dressed up at a party a few years ago, due to something getting lost in translation from American English!
Quite understandable that you are having collywobbles about the surgery. You'll be glad when it's done!

Morning All. I woke up about 5am ready for work before realising I'm not actually going.

skap. wtf, bridget and brassica it went OK telling Ds3 as I'm post op and seem much more like my usual self.
We also told my dsc who live in the states. We had an amazing time with them on holiday in July (when all the abnormal results and urgent appoinment letters were arriving at home). They were pretty shocked but at least those that need to know know now.
Feel most sorry for my 17 (dc4) year old who is the one living at home. They have Aspergers Syndrome and having issues at school and generally struggling atm.

I do enjoy baking a lot and find it helps keep me busy. I don't usually have enough time for it so am going to make the most of it all now

Brassica it's totally natural to feel wobbly before any surgery. A GA is always a bit nerve wracking as you are handing responsibilty for yourself entirely to other(highly trained) people. Have a good chat with the anaesthtist before hand. I've noticed the GA's I've had over mors recent years, there has been a lot more emphasis on patient communication rather than the production line I remember from years ago.
It defintley goes both ways re big surgeries/chemo etc. I can't imagine what it must be like going though chemo, it is so relentless. My cousin has breast cancer and is doing well and now having monthly injections. However the treatment has been so gruelling and the side effects endless.
I guess we are all here and facing what we do because we all want the best outcomes possible and as you mentioned up thread we all 'hope' a lot.
Anyway, that's enough maudlin from me!
What a shame about the Halloween party, it's so annoying when not everyone especially the hosts is in the spirit of it. It makes you feel like a right banana or skeleton in your case

fudge you must be at hospital by now. Will be thinking of you today.

Have a good day today everyone.

I think I'm going to a garden centre. I've e been dog walking a lot with DH but have only been to sainsburys so far, so the garden centre is the pinnacle of excitement for me

Excuse all the typos and lack of punctuation. In bed with phone and no glasses on!

Hello there everyone!
I just looked out of the window at the front of our house and there was a jay on the wall, it's still there, hopping around with something that looks like a large acorn in its beak. That's only the second time I have seen one round here, we are in inner London.
Anyway back at the Patience - sending very good wishes to fudge for surgery today, and Brassica I can't remember when you have the lumpectomy? And WTF for an easy time with herceptin today, how's the rash? Catnidge I bet it felt good to take the support stockings off, they are pretty uncomfortable. What did you do with the poor abandoned bunny, unravel it?
@Doublethecuddles how are you? I think you were getting some results this month, hope everything is as good as it can be.
@Iputthescrewinthetuna have you got a date for the scan yet?
@Losinglola have you had any more investigations?
@MustardScreams how's the radiotherapy going?
@nellysephalent you should have had a date for the scan and biopsy now?
@Toofaroutallmylife have they been able to resume the immunotherapy?
Also thinking of Snows, Trumpton, Piggles, ellen, minou, BitOfFun EmperorBallpitine Meercat and all the other regulars and irregulars!
We had a lovely day out at an RHS garden yesterday, the autumn colours were amazing. Today is sunny as well.

Hi all and Bloodybridget. I've been lurking on the thread.
I have my appointment at the 2ww breast clinic tomorrow afternoon. I've been keeping the wise words of WTF Skap and BitOfFun in my head.
I promise I haven't been googling!

Hi minou best of luck for tomorrow, did you decide to take your mum in the end? Hoping they give you good news.
fudge hope it all goes well and you are comfortable afterwards with plenty of painkillers.
@Brassica since you mentioned it I see the word "hope" everywhere on here and I can't find an exact synonym! Just to add about the surgery, I was quite overwhelmed by how kind everyone was, the nursing staff, the doctors, even the theatre staff. As he wheeled me into theatre the guy held my hand and said don't worry we will look after you. You will see the anaestatist beforehand and can ask for pre med drugs. They don't automatically give them but mine was happy to I was high as a kite for a pleasant 5 hours.
Don't be surprised to feel emotional afterwards. I wept buckets for no obvious reason.

Hi all,
I'm back from having my first herceptin injection (5th dose of it) and it was a bit stingy but fine and done in minutes. I was slightly freaked as they sat me in one of the chemo chairs to have it done but I was in and out very quickly. And all my fretting about my ECG results was pointless as my heart function had actually improved by 1% after 2 months on herceptin.. so seems it's standing up well so far.
My rash is much improved thanks bridget. Mouth ulcers are proving to be tenacious but other sore bits have all but gone. Taste buds are recovering and I have been eating some proper food over the weekend which has been lovely. So all going in the right direction and so good not to have any chemo on what would have been chemo day....I don't think.i could have done another one....this last one gave me a proper going over. The nurse on the unit today was so nice...said I've been through a lot on a tough regime and I need to take time to recover ....so I've got official permission for some tic!

brassica you'll be fine with the surgery. As others have said, they are very patient focussed these days rather than production line. The anesthetist who did my op asked me if there was anything I was worried about and I replied that I didn't want to be vomiting or in pain, then when i was wheeled through to the pre-op room, all systems go, he specifically mentioned those two things to me and told me what he was doing to make sure they wouldn't be a problem...very impressive and reassuring . Im sure you'll be fine. Just follow the advice you're given.

Is zorgo;getting results and final treatment plan today? Fingers crossed that it's going ok and no surprises.
minou will be thinking of you tomorrow and wishing for the best possible outcome. Let us know how you get on.
catnidge i think that telling people is one if the hardest things. I just hated seeing my nearest and dearest so upset and somehow felt like I had let them down by putting them through the worry of me being ill. Crazy really. I sometimes think it's easier for the patient to bear all this than for those close to them.
Sending good wishes to all. I'm going for a quick walk up to the high street then home to do some knitting and watch Netflix. I've put the heating on. The sun's gone in and it's flippin freezing here! I could do with a nice warming hot port in front of the fire at the Patience!

Brassica we had a great time at IKEA! I am no longer allowed to go there unsupervised, and with a 6 year old, you don't get much time to browse, so we only got what we went for!

fudge hope everything went well and you are being well looked after on the hospital.

wtf I have a heart scan/assessment on wednesday, then have an appointment on wed 6th to discuss treatment plan (dependent on heart results), then likely to start chemo on thurs 7th. Dreading it and wanting to get going all at the same time!

Hi Bridget - thanks for asking after me! My liver levels are still raised, so still on steroids. I felt really rough a couple of weeks ago, which coincided with reducing the steroid dose, so now they think the steroids might have reduced my body’s own cortisol production.

Have been referred to an endocrinologist now! Having a Synacthen test tomorrow to see if my cortisol is suppressed.

Am trying to view this all as minor niggles because in the overall scheme of things I’m fine.

I’m seeing my oncologist on Wednesday so will probably get my date for my six monthly scans then ( standard for a melanoma patient on “ watch and wait”) so some lovely scanxiety to come!

All the best to everyone on the thread x

Hello hello. Thanks for kind words. The chemo is phew, quite hard. I'm just just rounding the slump from the second course. There's always a couple of days where I am literally drained of all life, but I am hoping it will be worth it.... It is hard to enjoy things when it's hitting though. My middle dd is suffering from an illness and dh made the mistake of leaving us to look after each other yesterday, we basically just lay there all day waiting to die, or him to return, whichever happened soonest. It was not funny really. I think he is still having a hard time understanding exactly how debilitating this is. All three kids are on half term and we are doing nothing. Today, my thirteen year old had to go walk to the shop to buy lunch for us all as he had gone to work but there was no food. Tomorrow he has to take our other daughter to a hospital appointment. Next week she has major surgery! Seriously, did we anger the gods?

Oh Emperor that's awful, it really doesn't sound manageable for you. Is there no-one else who could come to give you a hand? Macmillan say they offer practical support, would it be worth calling them? The number is 080 8808 0000, 7 days a week, 8 am - 8 pm.
Toofarout sorry you are still having problems with your liver.

Zorgoth good luck with the scan. I quite understand wanting to crack on with treatment, the sooner it starts, the sooner it's over!

Nay Panic! I will soon have a local girl with car to help, its just the current week that is a shit storm. Dd and dh are currently at A&E. Its these sort of problems that are hard to resolve. Parenting three kids needs two functioning adults, really. Good night!

Thanks for asking about me.
Appointment in Wythenshaw tomorrow with plastic surgeon and a CT scan on my stomach to locate blood vessels for the DIEP reconstruction . One of my questions will be whether the healthy breast can be reduced so I have a matching but smaller pair .
I am ff cup and do get backache .

Then off down to a festival in Cornwall for a few days.
Return to the island on the 4th and see the on oncologist from Clatterbridge on the 11th ,but that’s here.

The last couple of weeks have been strange and almost as if I don’t have this diagnosis but I think it’s all going to kick in again tomorrow !

Managed to arrange care for MIL whilst away this time and have a care agency calling to see her to arrange visits when we can’t . That has been stressful .

Trumpton hope tomorrow goes well and that you have a great time in Cornwall.
Emperor that's good you will have some help soon.

@Trumpton I was wondering how you were. Are you all healed up now? Best of luck for tomorrow, hope the surgeon can do what you want. I can recommend AA cup size. Enjoy your festival- what's on?

@EmperorBallpitine blimey, good job you still have a sense of humour! I do hope things calm down for you.

@fudgesmummy hope you are recovering and the op went to plan.

I'm feeling sorry for myself. Went for chemo today but thought I might have chest infection. They have postponed chemo until tomorrow and referred me for suspected blood clot. Waiting in a horrible ward for tests. Probably here all day.

Sorry to hear you’re stuck on a ward Skap - hope you get some answers soon.