Cancer support thread #82

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

Welcome @MothralovesGojira to the thread no-one wants to join.

The lack of coordination between departments or even different staff in the same department is entirely predictable.
I have made amendments to my treatment and schedule but I have private treatment and my oncologist is quite long suffering whilst I rant away.
Don’t ever feel that you should be grateful for the treatment you receive, if it isn’t working for you in anyway then say so.

@Silkierabbit I’m actually 46 so not as young as you may think! My first breast cancer was at 36 hence I had my daughter late. Yep that cancer really put a crimp in my 30s … Tried naturally at 40/41 didn’t get anywhere … used one of the embryos I had frozen in a blind panic using donor sperm at 36 and da daaa pregnant at 42; gave birth a few months after I turned 43. And now we have a beautiful daughter. My partner is 47. Even before cancer being older parents was bloody hard but she’s the best thing that’s ever happened to us. And my family - only grandchild etc so no matter what happens to me she will be treasured and loved.

I also had to go to the dentist today pre-chemo injections for mets on my bones. They did want to do x rays but I’m not quite due them yet - had a root canal and major work done last year -honestly can’t afford them as private dentist but I was pronounced ‘dentally fit’ so that’s a bonus. Still a bit worried about my teeth though like you guys.

The steroids they gave me first time round worked awfully for me! I felt like a zombie and I literally couldn’t do anything- not even look at a magazine - look, not read - or listen to the archers ! Tragedy. I didn’t take them after that. I’ve got steroid fomo now after reading about your ramblings and other people’s bursts of energy!

Thank you @MrsPnut
The whole lack of communication just makes things so much harder. I keep thinking that had I not asked for the start date I would have turned up for my appointment next Wednesday none the wiser while my household would have been plunged into chaos when I got home. I work, my DP works, my youngest DC has severe MH problems but apparently I should be available at a drop of a hat.

@MothralovesGojira Yeah, I got jerked around with the letters and schedule changes and being unable to contact anyone if I was proactive about managing my schedule and NHS resources. At the start of the pandemic my bone strengthening injection was removed from my treatment cause "covid" but no one told me when, why, or for how long. Its a key part of my regimen, Id like to know! I have to scan regularly, and multiple scans, and they were never coordinated on the same day or even in the same hospital trust sometimes. I finally said to hell with this and went private where at least they attempt to coordinate care and if there is a bobble I can call scheduling/secretaries myself.

I believe that taking control of your cancer/being involved in your care is the biggest part of being a successful patient and its a shame that the NHS system does not really allow this. There was always an underlying sense of sit down, shut up and be grateful. But MrsPnut is right, you do need to push back and raise it. If that doesnt generate results, then talk to anyone who will listen (breast care nurse, someone at Maggies, the chemo nurses, etc) to find out the right number to call for scheduling and hash it out with those people. Doesn't have to be whiny or anything just ask about best contact in case there is an emergency and you need to amend the chemo schedule. Don't be fobbed off by the understanding nod and sympathetic smile and "but its just so busy right now".

Best of wishes for your chemo start next week!

@mowly77 I also had my daughter at 43 and she'll be 6 this year, so very similar to you, although my cancer diagnosis was only last year. I think kids are hard work whenever you have them (but worth it) but I do feel my age related lack of energy is a downside. Add in cancer related lack of energy and I feel for my daughter - she's handled a lot at a young age - but at the same time I do find that trying to give her a 'normal' life is a great motivator to just keep on going.

@MothralovesGojira Not sure I've understood this right - are you actually having chemo 2 days running - 'TC' then Herceptin???? If so that is just unacceptable.

I also had HER+ bc - but had chemo first then surgery. Communication has been rather spotty. It got a bit better when I could just email my BC nurse directly - the switchboard was otherwise hopeless.

@mowly77 @SewingBees I also had my daughter at 43 - she's now 16 (and I am ancient!).

Well, just had call from my surgeon, next op to remove margins 12 th May…

@MothralovesGojira another one in total agreement with Herbal and MrsPnut, sadly you do need to assert yourself in this cancer 'journey' against the expectation of gratitude for being treated, especially as there's a pandemic did you know . For the past two years I have had to be my own secretary, chasing almost all of my appointments, nagging about test results and speaking up for myself. There has been far too much 'we'll ring you back' for my liking and my natural impatience and the stark realisation that unless I am 'that patient', I probably wouldn't be as well as I actually am today. Good luck with your chemo next week, I'll be thinking of you Xx

Hi everyone, hope everyone is doing ok and as well as can be. I had my biopsy on Tuesday which wasn't pleasant at all to say the least. They had it fast tracked luckily and i was hoping to have the results by the end of the week but so far not heard anything so guessing i won't now until next week. Such a long process all this

Thanks for the nosebleed meds tip TwoNoisy

Sorry no clear margins Podge and have to go in again though was with someone having that and was at least a shorter operation.

Mowly You are still young for all this though I must have got confused as I thought you were 33. My first is IVF but I had her at 32.

Definitely no steriod energy here today I am the walking dead or rather the lying dead. 9am hospital call me when I am feeling half dead with headache and dizzy and tell me I need emergency bloods and blood pressure and maybe a blood transfusion or a platelet transfusion. I asked if I could stay in bed but nope. But all done now at least and just had bloods and blood pressure. Don't know what caused the panic this morning, one staff is very worried about me, rest are super laid back. Though they just want me to keep calling chemo line and updating. Blood pressure was not too bad and bloods are better than expected so can do chemo again on Monday.

I did not get choice in chemo dates though they gave me Mondays which actually is a good date as chemo goes as worst days well last time were Mon / Tues. Have only had light nose bleeds today and still bleeding elsewhere but think its easing, feel like hit by a bus though.

The steriod effect is strange Mowly I went from piriton zombie to full of energy and immediately put music on but then the rambling, anxiety and slight paranoia starts as well as not giving a monkeys what anyone thinks, you just tell everyone exactly how it is. Then you come off them and think, should have been more diplomatic. But get loads done those days at least just some wierd things happening as you go on autopilot and week 1 included telling my former best friend who has not been in touch since got cancer (think she has health anxiety) that I thought that was a rubbish thing to do and I was very hurt by her. This week included sending e-mails to the school saying I thought some of them had been plotting against us. Then I come off them and am though loads of forms get done too.

As part of steriod induced madness I applied for a hotel break with a cancer charity and got it for a week and a half time which will be lovely. Just hope am up to going.

@Silkierabbit The steroid effect is so … . I am glad you got the hotel break at least and I hope you feel well enough to go. And honestly I think more people should be told exactly what we think! Some people are awful around cancer - in different ways - but I don’t even need steroids to know I can’t be arsed with it. I know it’s their stuff but still…

And we’re all too young to be going through this. Sigh.

Agree @MothralovesGojira @Fantasea and everyone - you definitely have to be your own advocate. So far, I’ve spent too much time and energy making a lengthy formal complaint to my hospital involving my local
MP and cc’ing in the chief exec. Who is leaving this week I just found out. They think it’s all fine now I’m due to start treatment I. Wednesday but let me tell you it’s not! They’ve not-so-subtly swapped my cancer care nurse … I think I am definitely down as THAT patient.

@Acinonyx2 and @MothralovesGojira When I had Herceptin for the first time, it had to be given on a different day to the other chemo I was on in case there was a reaction. Subsequent times it was given in one session.

I have now had Covid for 3weeks. I've only got cold-like symptoms but I suppose my depleted immune system is finding it difficult to fight it off.

When I was on carbotaxel chemo (weekly) I used to arrange to do everything on a Friday as I was so chocka block full of steroids 😄 I used to get loads of housework done! Since being on the EC regime though they’re not having the same effect, or at least I don’t feel the same. The side effects of EC are more gruelling though and kick in quicker, so maybe it’s everything counter-acting everything else 🤷🏼‍♀️ I honestly don’t know. I’ve had a week and a day of feeling dreadful after last weeks’ EC, just starting to feel VAGUELY human again, but now I’m full of cold. Honestly, if it’s not one thing it’s another!!

Sending love to everyone xx

@HauntedDishcloth I've never heard of that before. When I had my first chemo, I had a full on allergic reaction to pertuzemab (cousin and companion to Herceptin). When they got that settled down the head nurse half heartedly suggested I could complete with docetaxel the next day. I really did not want to come back and start over so we carried on. It was a very long day and I was pretty wiped out - but I can't see how it would benefit me as the patient or the hospital to have divided that experience into two halves. The reaction is quite alarming but they know how to manage and deal with it.

@TwoBigNoisyBoys due to the above I was on high does steroids and got quite a high for a couple of days but then an almighty crash. I didn't have the high dose when I switched to EC though. EC did get tough.

Thank you so much for all your input @Acinonyx2, @HauntedDishcloth, @Fantasea & others

Sorry for going MIA but I've been at work and so knackered when I get home that I just eat, veg a bit and then sleep (badly!).
I thought that I'd made some progress on Friday morning when at 9am I actually got through to scheduling. Sadly, the schedulers weren't there and the person covering the phone said that she couldn't understand what was happening and that a treatment schedule letter still hadn't been sent out but that I was definitely down for two lots of chemo next week but couldn't explain why. So I left my contact details and told her when I was available for a call or that they could leave a message on my home phone but guess what - yep no one called. What the person on the phone did say was that they have squeezed me in and that due to covid blah, blah, blah....anyway you all get the picture.

I was very clear all along for in my reasons for needing to stagger the TC and Herceptin so that I don't get so ill that I can't do my caring duties at home. Youngest DC has a life long condition that requires multiple daily injections which they can't manage because they have an emotional age of about 12, ADD and severe MH issues so they need a lot of support to even do even just one jab a day. At the moment it's a daily struggle to manage their panic attacks and self harming because the one person who holds them up and supports them (me!) has become increasing unavailable. Unfortunately, DP is unable to do the caring instead because he can't face up to the youngest's issues and DC doesn't trust him enough but that another story.

So, having had a long think I think that I will temporarily withdraw consent for the Herceptin until I see how the TC effects me because the original plan was 3 cycles of TC then Herceptin would be started around the time of cycle 4 and then I would be having a further 5 Herceptin cycles monthly and then it would be all done. I got the feeling on Friday that it is being doubled up and rushed because the chemo unit is behind and under pressure but tbh that's not my problem. My own MH and anxiety is now through the roof and I haven't had a full night's sleep since I phoned them and accidently found out my start date.

So I will turn up on Wednesday for my 'run through' and will firstly ask for my treatment schedule and then withdraw consent for the Herceptin and take it from there. I can only give them 90 minutes as it is because I start work at mid day and they've dumped in a PCR test in there as well but (surprise, surprise) I haven't got my appointment letter for that either. Sadly there is currently a covid outbreak at work so this maybe all a moot point anyway and I'll test positive.

Thank you so much everyone for your sage advice and giving me the courage to say that I'm not happy or comfortable with what they're doing to me. I have a mixed history with this hospital anyway and find it difficult to trust them although I had the best of care from the breast care unit and they did everything that they said that they would and haven't once mucked me about. I can always go to PALS if things get ridiculous or bad.

@MothralovesGojira Do try to talk to your oncologist about this. Herceptin is an entirely different kind of 'chemo' and the side effects are very mild compared to TC. TC is a proper old-style chemo - it's general cytotoxic regime, not targetted, so with collateral damage therefore potential side effects.

Herceptin is entirely different in action and targeted. In many respects it is THE drug for Her2+ and the most important because it actually targets HER2 receptors and has revolutionised treatment for HER2 bc.

I wouldn't put off the Herceptin - and staggering by one day will make no dent in potential ill effects as they will be mainly due to tc in any case. The only reason to stagger is for an immediate reaction - which are uncommon and having been through - also no reason to stagger.

@MothralovesGojira the BC ladies are much better placed to advise you on your drugs but I just wanted to say how well you're doing navigating all this. Your post resonates so much with how I felt when I was trying to get some treatment started, 3 months of nagging after my gynae appointment when I was told it was 'almost certainly cancer'. One of the difficulties is that you have to fight with all the admin when you're at your weakest, the terrible worry and lack of sleep plus all your other responsibilities are in addition to your diagnosis.

You mention the PCR and lack of letter. I have never had any confirmation of a PCR, no letter, text or e-mail, just booked with the testing centre over the phone, 'oh don't worry, they'll ring you' . One time, it went to voicemail and left the contact number to ring them back, so I made a note of this in my 'cancer book'. Something I found out for myself was to scrutinise every piece of paper that arrives from any department, a lot of usual extension and department numbers are on these and I record all these, I have quite a 'directory' two years later and it has been so useful. Now, when the oncologist says I'll need a scan in say 2 weeks, I'll ring the department the following day to see if I'm on the list and often have been given the appointment there and then, sometimes at the weekend, 'Is it really urgent? Oh yes, indeed it is'. You get the idea. I'm really hoping you can get some rest in before Wednesday Xx

@Acinonyx2 Thanks for your reply.

I do not have an oncologist. Last week I saw a locum consultant who had a temporary staff pass, looked bored, didn't check my surgery wounds and couldn't answer most of my questions. She read my treatment plan off of the computer and having been happy with what she said, I signed the consent forms there and then because I knew that I couldn't get time off work to come back. I have no idea who exactly is in charge of my treatment and I have no contact numbers to phone. I only got through to scheduling because I phoned the cancellation number again. This is why I feel deeply mistrustful of the hospital and why my anxiety is off the scale. I feel completely shit upon and that I have no say or control in what happens to me.

I will though take your advice on board about the Herceptin and ask more about that before I make the final decision on Wednesday. I have had so little info from the chemo unit that I'm feeling railroaded and my DC needs ME to know what's going on so that I can reassure them that everything's ok. They're terrified that I'm going to die at the hospital because this is what happened to my sister-in-law last year - she went in for a back issue and died a week later after the hospital found a tumour after 5 days and on day 6 she had a massive heart attack and then died on day 7. Her heart had literally been broken by previous radiotherapy treatment which was exposed by the growing tumour under her ribs. Yes, it's very rare but my lovely SiL never saw, or had a chance to say goodbye to, my DB or niece and this is what my DC thinks about. So I need to be truthful to DC and not made to be a liar by the oncology dept whether that's intended or not iyswim?

@Fantasea Thanks for your reply and comments

Yes, I was supposed to receive an appointment letter for the PCR as the hospital doesn't have the testing onsite. You have to go to a car park over a mile away! They won't see you without a letter so quite how I'm supposed to do the test in the hour between but I'll have to turn up at 9am and collect a letter to go to the PCR test site, have a blood test, run up to the PCR site, run back and then have my 'tour' of the chemo suite at 10am and then leave before 11.30am to go to work. They do the PCR's onsite if you are an inpatient so perhaps I'll come over all unwell so they'll have to do it there!!!
I wish that I did have time to rest this week but I'm working Monday, Tuesday and Wednesday afternoon in what is a demanding (& on your feet for 9 hours) type of job but ironically I work for a big medical charity. I only had three weeks off post surgery (all I could afford on lower SSP)so I am so very tired but it can't be helped but I love the job and my colleagues so it's not been so hard. The one thing that I have found is that the medical staff that I have spoken to are surprised that I'm still working but from what I see on MN I'm not unusual in that so not sure why they are surprised!

@MothralovesGojira

Don't know where you live but covid cases in London were one in sixteen last week and a lot of those are going to be NHS employees or people whose chemo has had to be postponed till they're negative. Also high in Exeter. Friend fell over and broke her wrist. Tested positive in A&E 'like everyone else who's arrived tonight' and now has to wait for negative test before the surgery she needs ASAP.

So hopefully your crap experience will improve over time... But I've never had the same onc twice and they seem to be v territorial over the divide between surgery and chemo. So wounds would be surgical business, nothing to do with them, and they were v put out when I asked my surgeon's opinion over whether to have 'optional' chemo or not. But I trust him because I've seen him often enough to have a relationship with him. So, basically par for the course, in my experience.

Do hope things run more smoothly in future. I think people do tend to give up work because having cancer feels like a full-time job. OTOH it's a wrench to do it because it's a link with real life as it used to be.

The other things that I would like to ask, if you don't mind me asking for advice from those who are more experienced than me, is

1. whether you take a 'kit' bag with you and what do you put in it? I have several food intolerances such as wheat, rice, tomatoes, chickpeas and dairy so not sure what to take that would help. I have bought some ginger biscuits on my Sainsbury's shop today thinking they might help. What other things would be good to take?
2. did you shave your head and if so at what point did you do it? I already suffer from alopecia (FFA) and have no body hair and only one eyebrow left so I'm very likely to lose what I have left.

Hi @MothralovesGojira…that all sounds so stressful, you poor thing. I really hope it all gets sorted out for you, it’s stressful enough as it is without all this!! Hopefully I can help with your chemo kit bag questions. I’ve been having chemo since November, so I’m like part of the furniture on the day ward now!

In my bag I have…a puzzle book, 2 biros. A notepad, my diary, a list of my current meds. A pair of headphones that fit on my iPhone, so I can listen to audible. Whatever book I’m reading. A large fluffy scarf I can drape over myself if I get cold. A pack of jelly/boiled sweets. A pack of plain crisps. A can of Pepsi max! I normally pack myself a sandwich and fruit if I’m scheduled for the afternoon session and I’ll miss the lunch trolley. I’ve never taken anything ‘ginger’ as it’s in the following days I get nauseous. I also have a pair of fluffy socks, but I’ve never worn them. A large refillable water bottle, although they provide bottled water, tea, coffee etc. A pack of tissues, and a small pack of wet wipes. Lip balm, deodorant, paracetamol. That’s about it I think. I’ll check and add another post if I’ve forgotten anything!

I keep meaning to take my travel neck pillow to make dozing comfier, but I keep forgetting!

Are you having chemo through a cannula I’m your hand, or will you be having a picc line fitted?

Regarding hair loss, I have been having the cold cap treatment, which has been fairly successful, probably lost 40-50%. So I haven’t shaved my head. The nurses say hair loss kicks in 10-14 days after chemo starts, so if you’re not having the cold cap, that’s probably what to expect, although hopefully someone more knowledgeable will come along to help you with this query. My friends in the ward (not doing cold cap) shaved theirs as soon as the hair loss started.

Sending you love. If there’s anything else I can help you with, please just ask 😊

@MothralovesGojira I'm utterly appalled on your behalf. The lack of proper briefing and advice is terrible. As pp said - surgery and oncology (and radiology) are independent territories which can cause problems. It may not seem like it - but there will be an oncologist who has particular charge of your case. I didn't actually meet mine until after my first 7 chemo - it was a different one all the time as others have said -but if you ask - you will find that there is in fact one who is supposed to be in charge. You should also have a dedicated breast care nurse which can be very handy for communication issues. I had a lot of communication issues but then I had escalating complications that changed that around, a bit late in the day (bit unusual).

Thanks for sharing the awful story about your SIL as that certainly brings home more about your situation regarding hospital and family etc - I see better where you are coming from.

Typical bc regimes median hair loss really kicks in by day17-18. I didn't cold cap although it didn't seem to be on offer anyway. I cut mine short - it's easier when it starts to fall out.

I took a book, magazines, notebook, headphones for my phone/music, savoury biscuits and water. It's good to drink plenty of water but it's a PITA going to the loo with a line in.

I've drifted off MN recently but your treatment is going to be very similar to mine so I will check in more regularly.

@MothralovesGojira I used to look like I was moving in for my first set of chemo but I would be there all day. I had slippers, 2 blankets, coffee travel mug, drinks bottle with squash in, ebook, iPad, AirPods, snacks including haribo, crisps, chopped cheese and grapes.
I did get lunch and afternoon tea on my unit as well.

Next set of chemo was given at home but back to the first unit for the third set but didn’t bother with my slippers then as I was only in for about 3 hours. Still made sure I had lunch though!

Hair loss, mine started falling out after about 2 weeks. It got tight and itchy and my hair completely matted. I’d had my hairdresser on standby though and she cut the mats out and shaved my head.

I do think you should consider making a complaint, your care appears to be chaotic and this makes planning difficult (as you have found).

@Acinonyx2 So lovely to see you, hope things are going well.

I am just about recovered from my trip last weekend, my 4th covid jab and DD2’s various activities. I’m going back to work tomorrow on a very phased return as I still have to have radiotherapy. I’ve made cakes and am very excited but I also have child to drop at school for revision sessions and know I will be exhausted by the end of the day.

@MothralovesGojira that is awful- you should indeed have a breast cancer care nurse and she should be advocating on your behalf? If you have one can you call her tomorrow?

I’ve got a wicked infection. I’m sick as a dog.I’m going to have to get through to my GP ASAP tomorrow and go on antibiotics tomorrow and won’t be able to start treatment Wednesday. I am fucking gutted.

So sorry you are sick Mowly I hope antibiotics kick in quickly and does not delay things too much.

I have been feeling quite rough past few days, between lots of bleeding and then gastric symptoms, also lost a lot of feeling in legs and feet and just been sleeping. And the fun starts again today at 3pm, urgh. My chemo line are at least very good and answer after 5 mins and encourage you to phone, need to phone again re the neuropathy, its just so early on after 2 cycles but don't want permanent damage.

For chemo days I take a coolbox, with ice lollies (though I am having increasing difficulty keeping my ASD DS from snaffling them all, he has an ice obsession and will eat 4 in an hour), ice gloves and ice socks which is supposed to help with neuropathy but in my case does not seem to help. Then have gel to try and avoid covid as its rife there. And I take ice hats with frozen peas under in an attempt to cold cap as not allowed, its completely hopeless but it keeps everyone entertained and the nurses are now fascinated as to if my frozen peas experiment will work. So far no hair loss at all but only day 14 on a weekly regime so equivalent of 2/3rds of a dox or EC dose so far so think would be too early. But it distracts me anyway. Most people its more phones / ipads / things to do. Mine provide biscuits and water / tea / coffee. I think if you stay longer you get basic meals. Though check with your hospital. Only thing is to move you need to move your line around so its not that easy to walk to biscuits. Ours is like in a chair which can be reclined with a side table. Ours is boiling hot so no need for blankets at ours. If you have a weak bladder its worth putting a pad on as well, just to add to the glamour of it all, as its a lot of fluids. Wear what you like just need to get your arm out really, well that is all I need for a cannula one. I also take pen and paper as sometimes they tell you things like when to take meds.

Love to all.