Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

Yes, all the best for round 4 @AGreatUsername and sorry to hear about the nausea. I was planning (in anticipation of chemo starting for me in a week or two) to get myself some lollies or boiled sweets. Does that work for nausea for anyone?

Thanks for asking about my scan, and sorry to hear about your constant exhaustion @TopOfTheCliff . Must be so frustrating. My scan results are tomorrow, assuming they are ready in time. Am obviously v anxious about it - not just the worry about actual secondaries, but also I understand from my BCN and some googling that it's really quite common for it to show things like lung nodules which might or might not be suspicious but have to be monitored. I've never smoked, but I've been exposed to a lot of pollution and second hand smoke in my life, so I can't help suspecting this might be the case for me. Anyway, I have just been for a 5 mile walk to distract from the worrying, and feel really good physically now apart from a sore arm and boob. I'd love to go for a swim before my chemo starts, but my lumpectomy scar is still scabby (the arm pit one is healed over now) so suspect this might not be wise. Still too sore to run - I did do a gentle experimental jog and there was too much jiggling....

Thank you @mowly77 for the new thread. Marking my place so I can catch up.

Going for a pre op assessment on Monday ready for my symmetry surgery.

Big hug to you all.

HC x

Just writing in to say hello to everyone. Particularly want to thank posters who messaged me at the weekend over my dilemma taking arimidex . I felt so low and fatigued and your messages made me feel listened to and supported. Having a diagnosis with cancer messes with your body and your head massively.

@Mycatispretty it can be very difficult to think straight and make a decision on your own or with people who have a particular viewpoint or interest.

My chemo was cancelled this week because my white blood cells were not high enough, which was a bit of a surprise because I felt okay, a bit tired but nothing much else. I do wonder though whether I need to rest more, as I've been carrying on as normal with things including work and exercise. I don't know whether this means that it's going to carry on being problematic for future cycles or whether possibly this was a one off because things have been a bit more hectic than usual. We're trying again next week, it's treatment four out of 4-6 paclitaxel and carboplatin, so the options to just stop, reduce paclitaxel, or just do carboplatin are there. It's having to rearrange all my work stuff that's most of a pain.

@SierraSapphire unless you work for yourself would you be able to get a sick note from your GP whilst you’re having chemo? I think it’s a big ask and a strain on your body working whilst your undergoing chemo.

I'm self-employed @Mycatispretty and single so there's no more money coming into the house, my finances have been crap the past four years through caring for my DPs when my DF died in 2019 and my DM had two serious conditions and nearly died, 2020 and 2021 I lost half my business though Covid and got no financial support, and now this! I'm not entitled to anything without exhausting my savings, which I don't want to do any more than I have to, and the other problem is having something to go back to once this is over, I don't want my clients to find someone else and have to start again. I am working less and more selectively and I have passed some things on to other people but I still feel as though I need to keep things ticking over. And I do like working for the sense of normality and most of it is from home. It is difficult to juggle though.

@SierraSapphire thats’s hard for you. The past two years have been terrible (especially for single people, living alone and carers for elderly mothers like we are) then to get a cancer diagnosis too like us lot on the thread.
Have you spoken to McMillan re finances? I might be wrong but I was under the impression you can claim PIP even if you are working. Big hugs

Yeah I think all the stress around caring for my parents and the stress of being abandoned during Covid has contributed to my cancer. I can't see how I meet the criteria for PIP either around length of time or need for care (I used to be a benefits adviser). I know people can be creative, but it still wouldn't give me much money so I'm not quite at that stage yet!

@SierraSapphire You might be seeing cumulative effects of multiple sessions of chemo having affecting your levels. It sounds like you're doing a lot & you can't go wrong with more rest! But that comes from someone who was really weakened by the chemo! Mine was never delayed somehow. I put it down to smoothies fortified with build up powder & manuka honey, & I'm on them again at the mo to recover from my recon surgery! Hope those levels sort themselves out ASAP

Sorry you had it tough @HauntedDishcloth My favourite smoothie at the moment is coffee, almond milk and almond butter, though my diet in general is good with plenty of protein and veg. I've been probably overdoing it trying to prove to everyone that I'm okay, plus living on my own there's no one else to do stuff, and looking after other people. I've just got back from taking dinner to my mum's but I'm going to make an effort to sit down more, starting now! Good luck with your recovery too!

Had my PET scan today. Goodness I was shattered afterwards!

@SierraSapphire I know you used to be a benefits advisor but sometimes we don’t see things as clearly when we are in the thick of it. Do talk to someone, you sound like you need a break and PiP may make things that bit easier. 💐

@Gilead Yes, I think that @AGreatUsername has persuaded me. I was reflecting that it's not that I don't know what to put (I also have done applications for both my DPs and my DB) but it's very different psychologically being on the other side. It won't help me to take a full break but it will take the pressure off a bit. Good luck with your PET scan results. Thanks to everyone who's responded kindly to me.

@SierraSapphire it seems so relentless with one thing after another knocking you back. If you can cut some slack and give yourself space to recover it will get easier. It must!

I’m recovering a bit now, and had a good chat with my oncologist. She is pleased the tumour has shrunk but wants to keep to the longer chemo schedule as there isn’t evidence to support the effectiveness of six weeks of EC. I don’t really mind as it means I will be able to enjoy Christmas before I have surgery.
I’m going to look at the calendar and work out the rest of the dates now.

Top x

I'm glad that you are feeling more confident in your treatment plan @TopOfTheCliff - and that you can start planning for an enjoyable Christmas.

Helps so much to know where you're going!

Still no her2 results... The consultant phoned me yesterday to say the first test failed so needing to redo it. Good news is pet-ct scan shows it's not spread into any other organs but she did mention a few areas on the chest that radiotherapy would be able to deal with.

Sympathies to everyone waiting for news or having a tough time at the moment. I had difficult news today. Had the results of my CT scan which showed an "artefact" they need to examine more closely on my liver, so I'm having an MRI next week - and then more waiting for results. I think of myself as a strong person, but the waiting is destroying all my resilience. I saw the registrar first who was utterly useless and couldn't give me any more detail about what they'd seen, or likelihood of it being sinister and just kept reiterating that they would see me again in two weeks. I got as far as the waiting room and had to sit down and cry for a bit, and one of the HCAs spotted me and got a nurse to come and talk to me who then went and found the consultant, who was somewhat more reassuring - he said that it was at the low end of concern, and explained in some detail exactly what they'd seen and what it might be. My BCN also came in for that chat and said afterwards that the reg should have got the consultant if he couldn't answer my questions. So an all round bad experience, and I just feel such a massive sense of doom about it all. Every step of the way on this journey seems to have brought news that's worse than I might have reasonably expected, and I feel almost sure this is going to be the same and I'm going to be one of the unlucky people who goes straight to Stage IV at first diagnosis.

Sorry for the massive vent - and apologies to everyone who is already living with Stage IV diagnoses if I've been insensitive.

That sounds crap @dotty2 and don't feel bad for not being "resilient" - "resilience" seems commonly sold as something that an individual should be, whereas research finds over and over again resilience is found in groups and relationships, as demonstrated when you got some a better explanation and some understanding rather than the registrar who just brushed you off. As someone for whom things also got progressively worse for a time I completely understand how you feel, and I think we all know on this thread how terrifying it can be waiting for results

@fudgecat good news on your results! Really pleased for you.

@dotty2 i totally and completely understand. I am another one who is naturally very optimistic but had the absolute shit beaten out of me with a series of worse and worse news. I can’t offer you any real comfort but I have read most liver “things” end up being benign. If they’re in the low concern end that is really positive. I am sorry you’ve had a tough day. This whole journey completely sucks balls.

Im one day out from round 4 today. Feeling constant mild nausea and tired but like I can see the end of this cycle now. 2 more to go. I just want it all over. To live normally.

We are fortunate as our parents have agreed to child sit next year so we can have a couples luxury holiday. I’m torn on where to go. I wanted the Maldives but Tui (the only really affordable way to go) don’t fly direct so you lose 2 whole days before you even start. I’m torn between Mauritius or St Lucia. Any input?

Thank you @SierraSapphire and @AGreatUsername . I know a lot of people go through this cycle of worse and worse news. I just keep hoping at some point I will get to the bottom of the trough, at least for now. I appreciate your comforting wise words.

Oh - and I don't have an input on the luxury holiday destination front except to say that you absolutely bloody should go for the nicest, most pampering thing you can afford!

My best friend's dad was St Lucian @AGreatUsername so I'd go there on that basis, but that's not much guidance for you! I phoned up for a PIP form today and they asked me if I'd been out of the country for more than four weeks in the last however many years, I responded with a hollow laugh....

@AGreatUsername back in the days BC ( before cancer) I sailed to St Lucia from Gran Canaria. It was absolutely lovely. We stayed in Rodney Bay and Marigot Bay. It would get my vote.

@dotty2 I am so used to going in for results and getting the absolutely worst option despite my BCN being all positive and cheery beforehand. No wonder she is always surprised and I am not. I have that sinking feeling that tells me it is bound to be Grade 3 and aggressive and need chemotherapy. But so far I haven’t had anything spread beyond one lymph node so I am grateful for that.
I guess rather than why me? I think why not me? It sucks and I am fed up of the whole thing now. Let’s change the record and have something more interesting to think about. I even bought a Christmas present today!
Sending sisterly hugs
Top x

Hi everyone. I went to the GP today about a hard mass on my groin pubic area not really thinking anything but the next minute im in outpatients having loads of blood tests and I have an emergency ultrasound tomorrow morning. Google is not my friend as I cant see what it could be, its not near my lymph nodes and its bloody big and rock hard. I wish you all well. Im just abit gobsmacked at the moment.

@dotty2 Try not to fret, if this is your first ever scan ever they have to and will report EVERYTHING. Most artefacts found on screening tend to be benign. I have spots on my lungs that were found at my initial scans - I don't have lung mets, they are caused by air pollution or illness and most people have them. Same with the liver - lot of people have benign bits on there due to aging. The MRI will give them a closer look/different angle just to be sure. Im not going to say the odds are low because for me at every turn I keep ending up in the low odds bin, but I suppose think of it as less likely.

And I agree about registrars - I've never found them helpful and if one showed up to deal with my care at whatever point I usually felt fobbed off. I guess they are just about doctors? I dont know but they invariably have not great bedside manners.

No idea either @EachandEveryone - hernia would be my first thought (my DM is waiting for a scan for something she thought was a hernia but her GP wanted to check out) but presume it's in the wrong place or wrong shape or something for that? Or maybe your doctor is just being cautious like my DM's. Good luck, let us know how you get on.