Lacies, elephants, potato-based snacks... Whatever we are, this is our 57th CANCER SUPPORT THREAD

[WhatWouldLeslieKnopeDo]

Welcome everyone to another cancer support thread. This thread is open to anyone with any sort of cancer. And we have plenty of hands to hold if you're undergoing tests for cancer. We are always pleased to wave people off with an all clear, and there's plenty of room here if the news isn't what you hope for.

So don't be shy! We are a friendly bunch and there's probably someone who has been through something similar. Nothing is off limits here. Scream, shout, swear, stamp your feet...

I'm sorry that anyone needs this thread, but very glad that it's here. Cancer is shit. But it's a little bit less shit when you have people to share it with.

Our previous thread is here

Ooh yes, bags! I'd forgotten about bags I have two...

Chemo bag: my chemo diary, drinks, snacks, hand cream, lip balm, puzzle book, crochet etc.

Hospital bag: most of above plus pyjamas, undies, basic wash kit, notebook, phone charger

I've also typed up a very brief medical history and a list of all of my medications, doses etc as it saves going through it all every time I go to A&E

It is handy having everything ready to go when needed, rather than having to rush about looking for stuff and trying to remember what you need

I usually leave the hospital bag in the car when I go to A&E, and only bring it in if they decide to keep me in. I don't want to look like I'm moving in

Cookie sorry you're struggling. I hope you can get more lansoprazole sorted quickly. I find Rennies help a bit, though you can't take them too soon before/after lansoprazole.

I haven't had a ketchup craving, but keep craving vinegary/sour type flavours. I keep wanting Pizza Express salad dressing, which is especially annoying as I can't even eat salad

java Harry Potter sounds fun I hope you're managing to repel the cat!

Flippy it is hard to get your head around. Tbh I often think I've fully accepted what's happening, then it hits me all over again!

Hello Lacies.
Java thanks for the mention. Waving back to you.
Leslie i think my hair is getting back at me for having let it go before score settling it is!
Oh lacies! I must say I am quite impressed with the prep lists i saw earlier! I think we should bookmark them for future reference when( and sadly we will) have new joiners?
Chewing, hope you get to see your doc soon for feedback. I am waiting to be contacted to see mine too about my scan and weirdly I do not seem to mind the delay
Been feeling fine lately which I am convinced is due to the exercising( but could be for any other range of reasons really!) even the stiffness in my ankles seems to have significantly decreased. This time last year I was counting off my last chemo sessions and I had the las one delayed because of a UTI! How long ago that feels like now. I would like to assure those embarking upon or still having chemo that chemo really does come to an end and you too will soon be talking about chemo in the past tense.
Blessings to all.

Evening!

FlippyNeck
Enjoy the retail therapy! noise cancelling headphones sound great don't go too overboard though.... I got myself a virtual reality headset thinking I would wear it with headphones during chemo and immerse myself in different VR experiences, the doctors didn't want me wearing it though because they worried that if I felt very dizzy all of a sudden they wouldn't know if it was the headset or the chemo. Party poopers!

WhatWouldLeslieKnopeDo
Could you eat Cornichons/gherkins for your vinegar cravings ?

Cookiepuss I got myself one of these www.intelex.co.uk/soft-toys/warmies/warmies-cozy-plush.html because I found it less of a faff than a classic hot water bottle and not too too hot and also easier to stuff directly under my t-shirt whist walking round the appartement. Mine is an elephant called jacob.

I'm very happy today as I saw my hematologist for a check and my platelet levels are good so I'm over the moon because my blood checks from last week had me as slightly anemic but after about 117 different questions he suddenly asked if I'd had my first period ( hadn't had any since chemo) and ... effectivement just before my blood tests I had a mega revival of mother nature at her worst period.

Talking of moons, here's tonights moon I spotted walking back home

pimmsy at your VR headset! Could you try it out in advance then you'd know if it made you dizzy?

I have Bluetooth headphones and they're quite good. One less thing to get tangled up in!

On the subject of warm things I have a heat pod. Mainly so that I can heat it up while in hospital. It's a lot heavier and harder than a hot water bottle as it has a big solid lump of plastic inside. But very cosy.

Good news about your bloods too pimmsy and what a lovely photo

royal I'm impressed with the exercise. I'm sure it makes such a difference to wellbeing. And it's good for your cancer risk too oh dear, I hope my hair doesn't take revenge for years of neglect! I'm sure it doesn't seem that way to you, but it seems hard to believe it has been almost a year since you finished chemo. Here's to your future health

I have an infected toenail again. Chemo is so glamorous. My GP has given me a cream so hopefully it'll clear up quickly. It's surprisingly sore! goodnight lacies. I hope everyone sleeps well.

Morning everyone

Surprisingly good day yesterday as stomach settled down (such a relief) and no requirement for the Lansaprazolewhatsit meds or even the Gaviscon. Worked from home quite comfortably, went for a 20 minute walk and even did a bit of housework.

Have now started on some mouth drops and regularly cleaning teeth and mouth-washing.

Hair feels terrible - all dry and lifeless.

Am in work but feel a bit woozy this morning (feels like being very slightly drunk) which I assume is the lack of red blood cells? Wouldn't feel safe driving but DH is acting as chauffeur although, disappointingly, refuses to wear the uniform .

java - ooh I can sympathise with the cat problem; usually a 4am wake up call and it feels like an elephant has bounced across me.

pimsy thanks for the link; I think I may treat myself to one of those. My HWB does have a furry cover but looks very inelegant stuffed up my jumper or down my trousers.

Evening everyone - been lurking a lot but not had much to say!
I'm home after 2nd day of round 4. Yesterday I had pertuzamub and today doxataxcel and herceptin.
I'm feeling a lot better so far than the FECT for the first 3 rounds- really hoping my brain stays intact during this time. It would be great not to be zonked for the week before Xmas!! Expecting aches and pains though.

I'm am starting to worry about money now though. My Feb pay cheque will be about 750£ less and for the following 6 months as my salary is being reduced. Apart from Housing benefits - we rent - are there any other benefits we can likely get? DH already gets carers for our disabled son.

Hoping everyone is having a good week x

rocket it is worth speaking to Macmillan as they have benefits advisors, I believe. Our local Macmillan information centre also does a finance drop in session.

I hope you'll be feeling well ish for Christmas. Good that the side effects are "better" than the FEC.

Cookie good you managed to work. Wooziness definitely could be anaemia. Worth mentioning at your next appointment. If it's bad they may suggest a blood transfusion. They're amazing

I'm thinking of postponing my next chemo by a week as otherwise side effects will hit in earnest on Christmas Day. Part of me just wants to crack on with treatment, but the other part says I don't have many Christmases left so better to enjoy it.

I keep thinking of Lily and Sleepy and their families preparing for Christmas without them

Just popping in to say hi to everyone- not much to report here, like Royal life has been getting back to pretty much normal. This Christmas is going to be so much better than last year when I had chemo on the 23rd Dec. I will be thinking of everyone who is in this position this year and hope you all manage to find some happy moments with your families despite not feeling your best.

Royal, what type of exercising are you doing and how much? I started with really good intentions in the summer, but since returning to full time work I just find it impossible to fit in during the week- every night seems to be taken up by household chores, taking my daughter to her after school activities or I am just too tired. I hate running. Swimming is my exercise of choice but the times just don't fit in with my lifestyle.

Hello Lacies.
leslie i hope you make a deciison you are comfortable with regarding your chemo and I sincerely hope you have plenty more christmases to come. I too am thinking of sleepy and lily and their families. A lot of mixed feelings.
Hello Fresta lovely to hear from you and good to hear your life is getting back to normal. I exercise five times a week( treadmill, bicycle and planks..twenty to twenty five minutes each) it really really has helped me alot. I think with your job, you could start off with weekends( either join a gym, classes or just a brisk 20 minute walk in the park) and then gradually increase your workouts to include workdays..you could keep workday workouts to just 30 mins and the hour long work outs for the weekend. It is worth it. Trust me.
Waving to everybody else and always thinking of you who are struggling with the different issues to do with the cancer, be it the chemo, surgery, money or the emotional roller coaster.

Morning everyone

rocket I would recommend Macmillan. They have helped my Mum and Dad recently (Mum has terminal secondary liver cancer). They even filled in all the forms for them and took them off to the doctors etc before sending them away. I think my Mum ended up with a weekly payment of about £80 per week (can't remember what it was called but I can find out for you). They also managed to get a blue badge sorted.

Leslie I too hope you have many more Christmasses ahead of you. They are making such advances with treating cancer that I truly hope in the not too distant future everyone will just have a vaccination to protect them against this terrible disease.

I was talking to my specialist who said that even in the last 5-10 years they are doing things so differently and he believed that further advances would be made in the coming years that would make the current treatment seem completely barbaric.

(I am not sure of your exact circumstances so I hope I haven't said anything to offend).

After a couple of days respite from indigestion it is back (perhaps because I have finished the course of Domperidone?) but should have new prescription today. Feel a bit achey but think that is the immune booster kicking in.

I am miffed as my not so DH has eaten the last of the Belgian waffles my friend sent for me and which I was saving for today. By way of punishment I have sent him to the chemist for pile cream!

Thanks - I will give Macmillan a call today. It's playing on my mind a lot.
Hoping the centre is open next week so I can go in and do it all in one hit.

Just a quick one, though I've been reading everyone's posts -- hugs and to all for the weekend

Halfbaked, I remember another thing for the list: appointments with dental hygienist and dentist

From what I've read, once chemo starts then dental procedures are off the table or at least not to be done lightly

Fresta I'm glad you'll have a chemo free Christmas this year

Cookie you haven't offended me at all I have stage IV bowel cancer. It's currently treatable, but incurable. Progress is definitely being made with treatments though, and my team are quite optimistic. There's so much research going on. It's a "good" time to have cancer

I hope you've got your prescription and that the indigestion is under control. Grr at DH for eating the waffles though!

rocket I hope Macmillan were able to help

java yes, very good point. Chemo can also cause tooth damage so it's best to make sure everything is healthy before starting

I hope everyone has had a good day. I've been doing some Christmas preparations and starting to feel more festive

Hi slowly working through my list of things to do/get, thanks all!
java I'm not sure I'll get a dentist appointment in time but worth a try.

I've had a CT scan, bone density and clip put on the tumour. For both the CT and bone scan it was difficult to find a vein, which is a real issue, the radiographer told me about PICC lines but said they don't like doing them because they are expensive. What's people's experience of getting one?

Went to my GP and got sleeping tablets too, the stress of the whole situation is making for regular 4am wake ups. 💤 I haven't even used the time productively and am still way behind in preparations for Christmas!

Hope everyone is doing ok and coping, it's a tough time of the year

Hi Halfbaked, wow, that's a lot done! Sorry about your sleep... Good luck with all the Christmas prep

I pulled the cancer card to get my appointments in (the dentist one was just a quick check) -- at any rate, they need to update your dental records.

I'm thinking of a port myself, and would love to hear everyone's thoughts. I have no veins -- the one they used for my surgery got burnt with the IV antibiotics in post op.

Will need to ask the consultant on Monday. Can the NHS refuse a request for a PICC or port insertion?

I imagine they can refuse a request, certainly for a port over a PICC, if they don't feel there's justification. But I don't know if they really would!

I have a mini port in my arm. Some people have ports inserted in their chest instead. I am not sure how they decide where to insert them. The surgeon asked me on the day where I was having it and I didn't know, so he decided. Now that I've had it a while, I think it would be better if it were on my chest.

The obvious pro of a port is that it is completely beneath the skin so there's no dressings, no need to cover it for showers, you can swim with it etc.

The biggest con is that very few HCPs are trained in their use. This has led to many frustrating A&E visits and hospital stays, with multiple attempts to get a cannula into my failing veins and everyone staring wistfully at my port wishing they knew how to use them. (This is why I wish it were on my chest, so that I could perhaps learn to access it myself!)

So personally, unless you are a keen swimmer or going to be having long term treatment, I'd be inclined to get a PICC line over a port. They are always ready to use and any nurse or doctor should be able to access it.

Of course, some people get through their entire treatment without needing to go to A&E or anything like that, in which case it would make no difference.

Another consideration is that port insertion is a bigger procedure than PICC insertion. Some hospitals do it under local, but others under general. I had mine under local and it was fine.

I'm sure I had another point but I've completely forgotten it.

Halfbaked you've been busy! I hope the sleeping tablets help

I'm a bit behind with Christmas preparations too. I reckon we have a good excuse

I need to go shopping, but my digestive system is being an absolute nuisance at the moment I've barely left the house all week. I've decided to ask my surgeon to refer me to a specialist surgeon if he cannot find any solutions to my issues.

Afternoon Lacies

Hope everyone had a reasonable weekend. I'm sort of in "quarantine" now as apparently these few days are when my WBC will be lowest so am keeping a low profile and working from home.

Halfbaked - the PICC line and port were mentioned to me as I was worried they wouldn't find a vein as I used to struggle a bit when giving blood. When they checked mine they were "nice and plump" and the nurse said that when travelling for the chemo to keep warm on the way as that would help. However, if they found that after a few cycles the veins burnt out they would consider putting a line in. She did say to me that they could use both arms as I haven't had surgery yet and it would only be after surgery that I should avoid using the veins on that side for any blood tests etc.

I too have been having the 4am wake ups and then struggling to get back to sleep.

leslie thanks, yes I did get my indigestion meds sorted although strangely enough I took one on Friday evening and then I have been fine ever since and not needed to take any more. However, at least I have a decent supply for the next cycle. The local pharmacy have also liaised with my GP and got everything sorted for my next round on 29 Dec which is one less thing to worry about.

Not really feeling festive but have made an effort to put the tree up and did a load of present wrapping.

I even made a rhubarb and custard cake!

Online shopping order scheduled for delivery so I am feeling remarkably organised but no doubt will realise too late that I have forgotten something major (going off now to check that I have at least ordered a turkey).

My food craving at the moment is fillet steak!

Hello everyone.

I was directed to this thread by gingeroots and I've found it so comforting I could cry. I attended the Breast Clinic yesterday morning, fully expecting to be told my lump was just a lump. Instead I've now had a core biopsy and of course won't get the results until after Christmas. I don't really understand why no-one at the clinic did what amberlight has done - i.e. reassure me with some facts & figures. The radiologist said "it's no big deal" but he was the one who kept asking for more mammograms and the biopsy. Then the consultant refused to give me any kind of odds (I even suggested 1 in 10 but he wouldn't concur!) and looked at me with the kindest eyes which made me feel like a condemned woman. Anyway thanks to all you wonderful ladies I am in a much better place today. Returning to clinic on 29th.

Hi everyone. Been lurking but not much to say. Apart from - the Scottish Medicine Council have rejected pertuzumab for use in the Scottish NHS! Unbelievable. I wouldn't have been able to have it anyway, as they were only considering it for net-adjuvant use, but it's ridiculous how it's been approved in England and Wales but turned down here.

I have an appointment with psychology tomorrow followed by pre-op assessment. Not looking forward to either of those things. Also trying to get a gynae issue sorted, which probably won't be solved before surgery. Meh. My Christmas spirit is in very short supply I'm afraid.

Leslie, hope you get your digestive issues sorted. Hope everyone else is doing ok with treatments and recovery and Christmas preparations. Hello Argy, fingers crossed you'll only be here for a short time.

Welcome Argy but I hope you'll only be here for a short visit

Obviously there's no good time to go through this, but over Christmas seems an especially rubbish time (assuming you celebrate Christmas!)

Cookie I'm glad your indigestion has improved, though it might be worth taking the meds all the time to prevent it rather than waiting for indigestion to develop. I don't know, just speculating, hopefully your onc will advise well done on the Christmas prep! Fillet steak is definitely a classier craving than ketchup

I'm still in bed after a rough night. I suppose I'll have to get up soon

Evening all - sorry you are here Argy at Christmas. Xxx
I'm doing better on this 2nd phase of treatment than the FECT but it's still pretty draining overall. 4am wake up seems to be a pattern on here and some painful bathroom moments last night and today which I hope have now passed!
Some general aches and pains but at least the sickness is much less and my brain feels more intact.
I'm struggling to keep up the show of energy and Christmas spirit - especially hard when DD4 is bouncing off the walls. She has gone for a sleepover at her grans now which is relief. Feel I'm letting her down.
At least I might get to wrap some presents in her absence!
Sorry if a ramble - feeling a bit lonely - when all friends are off out doing Xmassy stuff and I feel a bit forgotten I guess.

Thank you rocket and Leslie. I'll be thinking of you and all the other "lacies" over Christmas (what are lacies by the way?!). rocket there is no way you are letting your daughter down.

Hello Argy and welcome. I truly hope your visit is short and I mean it in the best possible way!
Lacies was all my doing I am afraid! I am notorious for my typos as I type very fast and instead of ladies I kept typing in lacies and voila! It stuck and we kind'e like it as it makes us feel, well, celebrated :)
Leslie sorry to read you had a rough night. How are you feeling today?
chewing any luck with your oncologist? Mine is on leave so more delays arghhhhh

Thank you royalmama - there was me thinking it was something to do with hair . My laptop keeps trying to change lacies to ladies but I will tame it!

Rocket..you shouldn't have to feel under so much pressure. I feel for you and totally understand the loneliness feeling.
I am sure your DD will not feel let down. All she would want is for you to be comfortable. This time of year can bring about a lot of mixed feelings. The chemo will be over sooner than you think and you will slowly start to resume some normality. I am afraid I do not recall what you have probably already told us about your family, so apologies in advance for asking: is there anybody really close to you both physically and emotionally that you can give a call perhaps to come over for some tea and a chat? And anyways, we are always here for you. Blessings.