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.

@AlbertCampion I am so sorry, of course you are extra worried about the lump, and having to wait for the MRI too. Hope you get an appointment very soon.

I've just left the hospital feeling very cheerful: apparently I don't have to be extremely careful while I'm having chemo, just sensible, so no shops or indoor public places, but walks are fine, even meeting a friend outdoors, and I can use public transport getting to and from hospital if not at busy times (I'm sure DP will veto this however!).
Also she said it is possible that I won't have another recurrence, and in any case I might have years ahead of me still - I have been thinking maybe a year, so this is amazing! My ambition of surviving the pandemic, enjoying normal life and singing with my choir again seems much more achievable!

@AlbertCampion sorry you're having a low day, it is hard isn't it? I know what you mean about wanting to get started with treatment, I am the same. I keep counting the weeks on my phone since my referral and panicking that things are getting worse as I wait.

@Bloodybridget that all sounds really encouraging and lovely to hear your good news!

I wonder if anyone can advise me please - I know that chemo is different for everyone but I have been reading about it and have a question. When you have chemo do you go every day for a week or is it just one day and that is your week 'done'?

Evening all, just reading through the past day, happy for the triumphs and sorry for the lows. I’m feeling rather settled this evening, I posted on here really out of a desperation to vent but what you guys have duly reminded me is that life goes on, the good the bad and the ironing! I’m as prepared as I can be for whatever tomorrow brings and just keep reminding myself that the world will still turn and there will still be joys to be found. So thank you, my appointment is at 9 and I will update. In the meantime I’m going to unload the dishwasher as, along with the joys, comes the mundane!

@FizzyOrange I have chemo treatment on one day, last year it was one day every three weeks, this time it will be one day every four weeks. Different chemo drugs take different lengths of time to drip through, last year I think one of mine took an hour, and the other, three hours, but before you get the chemo drugs they will probably give you one or two other medications to prevent side effects, I always got antihistamines, so that takes a bit of time too, an extra half hour or so, and sometimes at my hospital there was a wait for the drugs to come up from the pharmacy. So typically I would be on the chemo ward for five or six hours. But a nurse told me some patients have treatments lasting 8 hours or more!
@14yearsandcounting

@Bloodybridget What lovely news! I'm doing the same - meeting a friend for walks 3 days/week but no shops.

@FizzyOrange My schedule is a lot like Bridget's - one day every 3 weeks for a few hours (10 hours my first one but should have been 6 if it hadn't gone tits up). But I have heard some people having quite different schedules with different sorts of cancers and drugs. I'm hoping just a few poor days around 3-7 days in each cycle.

@AlbertCampion Hope you get answers soon. Every lump and ache becomes sinister during these times.

@14yearsandcounting Yes life does go on. Just testing my daughter on her physics formulas for her mock tomorrow.

@Bloodybridget and @Acinonyx2 thank you both for that reassurance. For some reason I thought it would be every day for a week each time and I have been calculating the taxi costs based on that and wincing! Hoping mine is one day like yours as that will make a huge difference.

@14yearsandcounting I will be thinking of you tomorrow xxx

fizzyorange when I had chemo, after the first one, I would go to christie early on chemo day for bloods doing, then sit around for an hour or so while the bloods were being checked, then would be called up for chemo treatment, which took about 3 hours (more when I was cold capping). This is because, when you go upstairs they gave me steroids and anti-sickness drugs and i had to wait (sometimes 30 min, other times 1 hour, depending on drug combo) before treatment started, so that they could start working. Once completed, that was it until the next round 3 weeks later. It takes longer if you cold cap, as you have to let the cap start freezing your head (30 min I think, before treatment could start, then for an extra 30 min after treatment, then time to allow your hair to unfreeze before they could take the cap off). It depends on your treatment regime. Hope that helps - please ask any further questions you might have - we're a pretty knowledgeable bunch on here between us!

@Zorgothslugofdoom that's really helpful, thank you. I have been fixated on every day for a week and have been reading on the Macmillan site how rough people feel on day 3-7 and wondering how this would work with travelling to the hospital with a sick bowl.

@ fizzyorange I seem to remember being told that Macmillan do a one off Grant of £300 to help with transport cost. I never got one and I haven't chased it up. My chemo has been every 3 weeks I haven't found the side effects to bad I was really worried about being sick but so far nothing. They do give you big doses of antisickness drugs before and after treatment which seems to help me.

@Bloodybridget So happy to read your news I'm coming to the choirs first post lockdown performance x

fizzyorange - that's the exact image I had of chemo before I started - feeling sick all the time and being sick a lot. The reality is, if you even feel sick, there is really good medication to help! Before chemo with EC(which is known to cause bad nausea) you have anti-sickness drugs, which work really well you also go home with anti-sickness drugs - take them religiously and you should be fine! My first chemo I felt horrendous in the evening (it was awful!), but had been told not to start the anti-sickness tablets until the following morning. Ended up phoning the emergency helpline (all cancer patients are given emergency phone numbers) who just said to start them immediately and they helped massively. For the next 2 EC I had z different anti-sickness before treatment started and was absolutely fine - didn't need to use the home medication at all! Moral of the story - don't be afraid to ask for help - most side effects can be trusted really well - you just need to ask for help! I have to say that before chemo started, feeling/being sick all of the time was one of my biggest fears, and aside from a few hours after the first chemo, I was absolutely fine. It's all very scary before you start chemo, and must be even harder now you have to do it alone (my DH came to all of mine) - but the staff are amazing and try to make it as bearable as possible, and like I said, most of the side effects are really controllable. Hope this reassures you a bit!

*Treated not trusted!

I Just had a text from the hospital reminding me of my chemo tomorrow 'huh, say what ? chemo tomorrow, first I've heard of it' Phone call to hospital reveals that I have been booked in and they don't understand why I haven't been told.
This afternoon I will be making a mad rush up to Bristol to get my bloods done (I'm making that sound more difficult than it is, it's only 30 minutes away and I have a lift!) On the bright side my chemo will be finished by Christmas

@14yearsandcounting hope all is well with you this morning.

@Bloodybridget so glad you have had good news about shielding. It will make such a difference to things if you can at least go for walks with friends!

@FizzyOrange you are asking all the questions I want to know the answers to, so I'm reading your replies with interest! Could I add another question about chemo? When you are actually having it, like actually in the ward, is that bit unpleasant? Or do you only start to feel ill afterwards?

I am having a slightly better day today, mostly because I am still in bed. I am having terrible trouble sleeping at the moment - I am so, so tired, but as soon as my head hits the pillow my brain goes into overdrive. I finally start to achieve deep sleep at about 4am. So today DH took DS to school so I could try to top up and it seems to have helped a bit. Although now, of course, I am hopelessly behind at work. Argh.

Also, wanted to say @Lizdeflores can't believe that mix up! Thank goodness you found out in time, but how stressful. But yay for finishing by Christmas!

@Lizdeflores I will look into that transport grant, thank you for that. Good news your chemo will be finished by Christmas, I am pleased to hear that. How many more sessions do you have to have between now and then?

@Zorgothslugofdoom yes that is very reassuring thank you. I'm the same, I have a real fear of being sick and hate even feeling sick so that's made me feel loads better. I didn't know you used to be able to take someone with you pre-covid. All this is so much harder now you have to go to everything alone. Just having someone in the waiting room after a scan is better than coming out alone.

@AlbertCampion I am the same, my sleep is awful. I am on high alert all day, currently waiting for this phone call about my biopsy results and just dragging tired all day long. As soon as I get into bed I struggle to sleep and keep waking up on and off all night. I finally go into a proper sleep at about 5ish and then want to sleep half the morning. Hoping you hear about your scan soon.

@AlbertCampion everyone seems to have different was during chemo. I find that the worse bit is the canula after that I mainly just doze, listen to music or podcasts to pass the time. I've not had really awful side effects I have had constipation and diarrhoea . Sometimes I seem to either taking something to help me go to the loo or stop me going to the loo! I also get achy limbs and just a general fatigue.

@FizzyOrange just to add to the chemo replies — some chemo regimes are once every 7 days too. (I’ve had once every 3 weeks (EC) and now I’m on once every 7 days (Paclitaxel).)

Whoever is interested in cold capping please check on the Paxman website for the times. I think all chemo regimes need 30 minutes before to freeze, but the time afterwards varies. EC needs 90 minutes after. Paclitaxel weekly needs 60 minutes. Then the defrost stage, which only needs about 5 minutes. If your hospital doesn’t go by the proper Paxman timings then you won’t get as good a result and it might be better to skip it.

It’s just glandular breast tissue, confirmed with scan! Thank you for all your thoughts, it’s meant so much. Wishing everyone the best of luck, I hope you don’t mind if I lurk around a bit to see how your all doing. Good luck today @FizzyOrange. And for everyone with ongoing treatment or worries xxx

AlbertCampion - all chemo is different, but I found the day of chemo was always ok (especially once they'd sorted out the anti-sickness and steroids) - I just felt a bit tired and spaced out a bit. For the 2 days afterwards, I was still taking steroids and anti-sickness sickness meds, which I think is pretty standard, and again felt ok (if anything I was perky from the steroids and found it hard to sleep). The side effects (for me they were fatigue and mouth ulcers, plus "dire rear" mainly) then kicked in on day 3-4 after chemo. I remember in my first cycle I felt pretty ropey for a few days, but then bounced back and probably had about 12 days of feeling pretty normal until the next dose. I have to say, the start of side effects was pretty much clockwork, so 3-4 days after each dose, they would start kicking in. As I went along, the time to bounce back increased, so I had less and less good days between cycles as the drugs and effects build up in your system - BUT not everyone has this. I was unlucky, as i picked up so many infections, and was admitted to hospital every cycle - sometimes more than once. But again, that's not typical - i was just really unlucky!

I will say, make sure you religiously take your temperature every morning and evening, more often if you feel unwell. If it hits 37.5 and above, phone your emergency number asap. Because i did that, it meant i got antibiotics and treatment very quickly and prevented a worse, longer infection. It's much, much better to get treatment quickly, as we go downhill very quickly when we pick up infections, as your body can't fight back. Most of the time, when i phoned the Christie helpline, i was admitted to their ward. If it was after 11pm they would direct me to A&E. I was seen at A&E multiple times and as soon as i told reception i was a cancer patient and on chemo, and had been sent by the helpline, i was isolated, assessed immediately and put in my own room on antibiotics straight away (before they even did blood tests!). It's really important to get seen quickly.

Oh, and a good tip is to always have a hospital bag packed and take it with you! Just in case!

Great news, 14years

Thank you so much for your replies @Lizdeflores and @Zorgothslugofdoom! I am just so desperate to try to time things around DD's eighth birthday, so I can be as on form as possible, but I guess it's going to be pretty hard to predict how I'm going to be feeling. One of the hardest things about all this for me is the loss of control - I feel like if I could predict the bad days then I would feel better about it. But I do realise that is wishful thinking!

@14yearsandcounting that is great news! So pleased for you! Hope you are cracking open some wine tonight.

Sorry, that should say DS.

@Zorgothslugofdoom thank you for all the information, that is so helpful to know. Could I ask another question please? By infections, do you mean coughs and colds or infections due to the chemo?

@AlbertCampion I also am struggling with the lack of control over everything. I have just been on the phone to a friend and have said exactly this. I have awful days mentally and these come out of the blue with nothing I can pin it down to. I hate being like this as normally I am a very cheerful and upbeat sort of person and I already hardly recognise myself. I do hope you can get everything sorted out around your DS's birthday. What are your plans for his big day?