Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

I have no experience of elsewhere but lunch today on offer was a choice of
Curried parsnip soup
Fish pie
Chicken tikka masala
Roast chicken dinner
Beef stew
And sandwiches
with fruit salad for after.

I had soup and a sandwich and we had pastries and coffee this morning when I arrived as well as dried fruit and biscuits being offered every hour.
I’m going to need to be rolled out in a wheelbarrow.

@TopOfTheCliff, @Noidea2114 and @seizethecuttlefish hoping all your ops go really well.

I had my telephone appointment with the oncologist. I have more than one tumour in my pelvis and the plan is to shrink them with 3 cycles of chemo, then have surgery, then a further 3 cycles of chemo. There was no rush on the phone and he explained all the risks and side effects, but as others have said, it all feels so real now and I feel overwhelmed with it all. I don't have a start date either which is disappointing but he thinks in the next 2/3 weeks. It seems that cancer is one long waiting game.

Sending love to everyone xxx

@FizzyOrange I'm glad you have a plan and the call wasn't rushed, but I think it's totally understandable to feel overwhelmed. I started to feel better once I was into treatment but still it's up and down of course. I find calls difficult I have to say, I'm much happier when I see my oncologist in person (but I also want to minimise my covid risk so happy with the calls from that perspective!). Hope you get a start date soon.

I'd be interested to know, from those who are having/have had breast cancer surgery after chemo, about what decisions were made re lymph node removal. I'm told that if, after chemo, they can't see any sign of cancer in my nodes on the scans, then they will recommend partial node removal. That makes me nervous because the cancer may have been in many more than the three irregular nodes showing on my original scans. I'm sure I'll do whatever they recommend and of course that may be to do complete removal but it'd be great to hear anyone's thoughts on this if you've been in a similar situation.

@MrsPnut impressive menu options! I have to say I was quite impressed with the options when I had my (nhs) hospital stay last month. I had pretty low expectations but everything was very edible and served on actual proper plates, not the school dinner trays I remember when I was having my children approx a decade ago!

@Noidea2114 it must all be such a shock - it's good things are moving quickly treatment wise but so hard to get your head around it all

Thinking of everyone. My posting here is a bit sporadic but I do find this thread a comfort and so much useful info, thank you all xx

Hi @FizzyOrange I was sorry to read about your diagnosis but glad you have spoken to your oncologist and have a plan. Your treatment schedule is the same as mine if you want to ask me anything please do.
I'm feeling a bit put out, not even hot drinks are provided during my chemo. My last session (08.30-16.30) a very kind nurse went to the cafe downstairs to buy me one and then I didn't have the money to pay for it I'm waiting for the C.F. thread on AIBU !

@Lizdeflores I figure I’ve paid tax on my medical insurance benefit for years. It’s time to get my money back in biscuits and coffee.

This is the point when I say that my radiotherapy includes free transport to and from appointments. I have a taxi booked for every appointment for the next 5 weeks.

I hope they are good biscuits maybe a Hob Nob rather than a disappointing Rich Tea. You get the driver to wear a peaked cap and call you ma'am, could brighten up a treatment day!

I’m not sure about a peaked cap and calling me ma’am. I’ll settle for getting me there and back in one piece.
Biscuits were hobnobs, shortbread and white chocolate chip cookies. The latter were what I managed to mainline.

@Lizdeflores ah that's really good to know, thank you for that. Could I ask, how long 'off' from chemo did you get for your surgery and recovery before the fourth cycle started? I have been trying to get a sense of total time for it all. I had presumed I would be fed and given cups of tea on the chemo ward! Do you have to take all your own food too?

The taxis sound great @MrsPnut. In other happy hospital journey news, I managed to cycle (very slowly, and walking up any hills) to and from chemo last week and it felt so so good to have a bit of normality back!

Hi all, are you ready for Xmas? I have to say I'm not fussed this year

Today I've been told I won't have chemo tomorrow as my neutrophils are only 0.5 despite having the injections after my last round.
Last round was my first and ended up in hospital for 4 nights due to neutropenic sepsis and muscositis and thrush in my mouth, I lost half a stone which for is a lot as Imm only 5'1", so I looked ill.
I feel better this week so was surprised about the neutrophils.

I have always had chronic mild neutropenia, but I had my injections (which btw I reacted badly to and may have to lower the dose) so I'm gutted I can't just get on with round 2.

@Fuckmyliferightnow gosh that sounds like some serious stuff to deal with. I hope that they improve and you can have the next round soon.

I have bought cheese, in fact DH will find out how much when he collects it next week. I ordered it ages ago but it needs collecting on a chemo day.
I also have a freezer full of party food and homemade sausage rolls. I have done my shopping order to delivered but I ordered ready made gravy and red cabbage etc to make like easier.
DD1 is an OT student so has brought me home a perching stool in case I need one to supervise in the kitchen or even if I am able to cook.
I thought about not bothering but I want to keep it as normal as possible even if it just us. I also like the leftover sandwiches more than then the main meal.

@FizzyOrange - sympathies. I think we're on a similar course (breast in my case) - chemo, then surgery, then some non-chemo treatment and radiation. I completely get the all-suddenly-feeling-real and overwhelmed. The last week has been a living nightmare of tests, scans, meetings and coming to terms with what this is going to do to us over the next year. I keep thinking "This isn't supposed to happen to me. This isn't my life, etc" but I guess now it is.

There are so many things that I'm afraid of (most really trivial compared to the cancer itself - things like having the port surgery, and being squeamish/sick during chemo, and losing my hair, and becoming known as the "cancer lady") but right now I'm trying to focus on one hurdle at a time, and framing my attitude to chemo as a medicine rather than pure torture. It's hard, though. The anxiety is real.

@Luballoo, good question about node removal. I've got two nodes affected, so would be interested to hear what others say.

@Fuckmyliferightnow, sorry to hear that - I can imagine once you've started you really just want to get on with it. I had a "good" day today in that I didn't have hours at the hospital and was feeling physically and mentally strong, so I powered through and did all my Christmas wrapping. Exhausted now, but glad that that's one thing done which won't be haunting me (or left to husband) if I flake out after treatment next week. We're ordering xmas dinner from a local resto, and husband will prepare it, so it's going to be pretty low key this year. One silver lining of Covid is that expectations weren't high, anyway.

Relieved to say that MRI and CT scan (organs) came back clear, though bone scan showed a lesion on my femur (wtf?!) that they might want to treat with radiation. Yesterday I had the marker clips put in (boob and lymph) which was like reliving the horrid biopsy experience. And today I received a call saying that the CT scan showed a small puncture wound to my lung, which was probably caused by biospy/clip placement. I mean, as if the last week hadn't been awful enough. With any luck the puncture is small enough that it will heal on its own - don't think I can face up to treatment for a slashed lung on top of everything else right now.

Can I possibly ask for tips on preparing for/recovering from the first chemo treatment? (I'm sorry - I'm sure it's been covered here a hundred times already). I start on Monday. I've been told there will be a blood test first, then an hour's wait for the results, a meeting with my onc and various discussions about medication (apparently I have to give myself a shot in the stomach on day 2??), and fluids. Then an hour of chemo itself, some follow-up checks and that's it.

I was giving some sweets to suck on during the treatment itself (to avoid the bad taste you get?), and I'll bring ear pods, phone, books, and a cozy blanket. I am extremely IV phobic (I don't have bad veins or anything, just the thought of it makes me jittery), so any tips or reassurances for dealing with that would be great (there wasn't time to book me in for a port, so that will have to wait for second or third treatment). Basically, anything that can help put me in a more positive frame of mind would be hugely appreciated!

@Fuckmyliferightnow, meant to say: awesome name!

@MrsPnut it's pretty scary!

@backformore well my first round was going okay til started the injection after day 3 which caused me labour like pains, then the infection.
Now I'm left with itchy burning feet and still can't taste properly.

So I can't really advise cus as it turns out it was all going wrong.
The treatment was fine and that night I didn't sleep and felt sick, so take the sickness tablets and drink a shit load of water, if it tastes too metallic put a quarter of fresh juice in and it tastes much better. Chewing may be difficult so let food cool slightly and chew well.

You sound like you have so much to deal with, I wish you luck

@MrsPnut We get a trolley of sarnies and yogurts. Theoretically there are hot drinks. Dh just had a small op at the private hospital and got a proper menu like yours. Sandwich is fine as long as there's one I like. I take lots of cheese biscuits, boiled sweets and a bottle of water. Nurse nags me to drink more but I hate dragging everything to the loo.

@FizzyOrange once you know you need chemo you are naturally eager to get started. I went 4 weeks from results to chemo and I was fairly gagging for it by then.

@Fuckmyliferightnow I was wondering what happened top you. That sounds grim. First chemo does tend to be a bit of test case to see what upsets you. Can they do more/something else to get those neutrophils up? When you were admitted with sepsis - was the trigger a temperature?

I have got all my Xmas shopping done, planned food. We never have traditional food anyway - so adapted to the circumstances, i.e. not too much intensive cooking. Chemo 21st so baking 22nd, food shopping 23rd then I'm expecting to feel lousy 24-31st - the steroid crash means my mental state way outstrips my physical state so a counsellor will call 24th to check on that (I get extra IV steroids for the drug allergy - so don't worry that it's the norm). I do want Xmas to be as good as it can be - for Dh and especially dd at least. I'm basically planning to lie wanly on the sofa like Beth from Little Women (I even have the cough...) until NY.

@Fuckmyliferightnow Oh geez, I'm sorry to hear you went through all that. What was the day 3 injection? I've been told about one on day 2 - I think in the stomach? Barf. May need to get husband to do that...

@backformore I am way more occupied dealing with the practicalities of treatment than the actual cancer. There are just so many things. I had my port day before chemo 2 - there's lots about this above.

Are you sure your chemo is only going to be for one hour?? That seems a bit unusually short. Which drugs are you having? They are given one at a time - and slowly first time. (Mine were 10 hours then 7 hours).

Some of us have the shots at home afterwards to boost white blood count. I do them for 5 days - there's lots about this too above!!

For recovery - be alert to your particular issues as they vary a lot - i.e. do you need anti-nausea or pain killers? It's actually quite difficult sometimes to pin down what kind of unwell you are feeling. I found antihistamines (Clarityn) knock back muscle/joint pain from either chemo or injections.

Soft tooth brush and non-alcohol mouth wash in case you get a sore mouth and you don't want your gums to bleed. (I basically just eat soft food.) Avoid acid foods - you're likely to have some acid reflux and - I get pills for it automatically.

If you feel unwell - tends to be a day or two after chemo rather than straight away. We are doing chemo the same day - hey we can post to each other from chemo!

Just dug out the info I was given: the PegFilgrastim (Lapelga) is the injection to boost the immune system that happens the day after the chemotherapy. Is this what caused your infection, @Fuckmyliferightnow?

@FizzyOrange My surgery ended up being between cycles 4&5. The delay was because they wanted a HDU bed due to my previous surgeries and they had to liaise with the colorectal surgeon's. The gap between chemo number 4 and surgery was about 4 weeks . They restarted chemo about 4 weeks after surgery .

Part of my ritual before chemo was preparing myself a packed lunch and I munched my way through chemo which helped pass the time I was obsessed with penguins,(the biscuit not the bird which are frowned upon on chemo unit's).
It's daunting to be at the beginning of treatment but it has gone so quickly I can't believe I'm at the end of it (chemo anyway)
I'm not ready for Christmas in any way my son breaks up from school tomorrow so I'm hoping his excitement will rub off on me.

@ChocolateandCheese I’m really so sorry to hear your news.

Like @gillmoregirl I can really recommend the Bowel Cancer UK forum in addition to this thread. Lots of really lovely people and plenty of information about what to expect re: side effects, and so much support.

I can’t add much else as words really fall flat in this situation, but you know we’re all here for you (and for each other). It’s not a bank, you don’t have to “put in” before you can receive support or offload or, well, anything really.

@Lizdeflores and @FizzyOrange, on the subject of eating while having chemo: can I just advise against chewing mint-flavoured gum while wearing a face mask? I have this gum which is really very mild. Turns out that even the mildest mint gum will have you in tears if you’ve got a mask on. It was like chopping onions!

Replying to several msgs

I got intense pain and sores in my mouth, which turned out to be mucositis, thrush and a gum infection, my temp spiked on day 8 which was my final day of Gcsf jabs (to increase neutrophils).
I started these on day 3. I had to stop them after 5 days because the nerve and bone pain were so bad morphine didn't even touch it.
That night I was admitted with a temp over 38.
I felt so poorly I didn't think I would make it, all I could do was stare at the ceiling whilst the medical team just got on and did their thing. They were amazing.
I had IV antibiotics and Iv paracetamol with morphine by mouth plus 3 types of mouth wash 4 times a day, plus a thrush tablet every day.

I only started eating normally Monday and now my weight is creeping back up.

My Oncology team are preparing me for next round.
They will reduce the Docetaxol to 90% and they will drop the Cyclophosphamide altogether as that's only added in as a control arm for my trial.
They wanted to reduce my injections but not sure what'll happen now with my neutrophils are so low

Plus side I feel really good now except tingly feet.

Hello. So sorry to read that so many people are having an awful time at the moment. I am really very lucky, as I am now on day 14 of my first cycle and I feel mostly ok, physically. My mood has taken a massive dip yesterday and today, though. Is this normal? I just feel so overwhelmed and depressed by it all. I know it is pathetic but Christmas is usually my favourite time of year, but this year I'll be having an echo and my second round of chemo on Christmas Eve, which means that the Christmas week will just be wiped out. I know it is a small thing but I just keep crying and feeling sorry for myself. I think I have a cold coming, which doesn't help.

On the subject of chemo lengths, my first one was only two hours from beginning to end, and probably 45 minutes of that was set-up, so about an hour is possible, I think. x

Yes my chemo doses have always taken about an hour i think (I've had ec, docetaxel and paclitaxel now) but with everything else that goes with it I've usually been on the chemo ward for 3 hrs minimum.

@AlbertCampion that is completely normal I think, certainly is for me. I'm also having chemo on Xmas eve, I'll be thinking of you xx

@backformore chemo lengths do vary depending on the drug, so I guess it's possible to only take an hour, but the first one is usually longer to make sure you don't have any adverse reactions. My first took 10 hours - even subsequent ones took 6 hours - so not so quick for me (I had two types of chemo - one as inpatient for 5 days a time)

I took a soft scarf to every chemo - now known as the chemo scarf. They can give you a blanket but I found my arms and shoulders would feel the cold more. Books/Netflix etc were all on standby. But by the time the high dose piriton kicked in I was so spaced out that music was the only thing I really needed. I also took my own packed lunch and snacks.

The first injection is the hardest but it's really mind over matter, after that you become a pro. I found a couple of YouTube videos helped me psyche myself up

@Fuckmyliferightnow sending you hugs. I've been through everything you're going through. It's shit for it to happen so early in treatment. Mouthwashing becomes laborious and a massive pain when do you eventually get your tastebuds back. I ate a lot of mango and pineapple as it's the only thing that tasted nice.

Had my PET scan yesterday. It was fine. I only slept for 2 hours though through scanxiety. A friend recommended the Calm app to listen to sleep stories. I tried it last night and it worked a treat. I did listen to someone reading out the GDPR regulations so that might have been the reason 😂. I need to wean myself off the sleeping pills so hoping this will work going forward.

My coordinator has brought forward my results meeting with consultant. Now I get my results on 23rd December 😬