Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

Was doing quite well this morning and I've just had a call from the hospital telling me I need to go in Thursday to meet my consultant.

This wasn't in the plan. The plan was lymph node biopsy tomorrow and genetic blood test then appointment from 16th April onwards once biopsy results were back (also the ongoing tests from the original biospy).

I'm guess the plan is deviating already and we are no longer looking at surgery then radio, which was the best case scenario

I've left a message for the BCN to call me back and hopefully they can give me something - I feel like I've had the wind knocked out of me. Was having quite a positive morning. Now I'm thinking they've got it wrong and it's now so much worse

@AlwaysALargeSauvignonBlanc Try(!) not to spiral and catastrophise. Which is a whole lot easiest said than done.

It comes up again and again here that the bit you’re in currently is particularly challenging.

I'm on the other side of the shitshow and can now see that appointment changes, shifting schedules, changing plans, information gathering, delays with pathology, MDT meetings, the general chaos of the NHS, do not necessarily mean doom. Also, for clinicians it’s their all day every day experience and almost impossible for them to empathise and fully understand what’s happening in your head. Hopefully you’ve got a good BCN who can talk you down. I found BCNs, oncology nurses and the radiographers fantastically supportive, especially when I was able to be v open about my anxieties.

Sarah Beeny nailed it for me: when the consultant said ‘You have breast cancer,’ she heard ‘What colour do you want your coffin?’

You will get A Plan. And that plan will alter, be modified. And you’ll grind through it.

This is a good place to vent and find support

Thank you @GrannyGoggles I did spiral but I am feeling better already.
I was expecting the deviations, just maybe not to early on. I was expecting a 'lets gather all the information then discuss' situation rather than a react here there and everywhere on.
I am going to try and embrace the bumps along the road
I am glad to hear you are out the other side of the shitshow. I hope you are well

Wishing @ememem84 well for her radiotherapy which I think starts today x

Radiotherapy #12 for me today.

Good luck for both of you, @BatshitCrazyWoman and @ememem84

Good Luck @BatshitCrazyWoman & @ememem84 🍀

Hope it has gone / is going well @BatshitCrazyWoman @ememem84

Yes, number 12 done, three more to go! I'm starting to feel really tired though, which is a side effect ... I'll be in bed soon!

Hello!! Thanks for all the well wishes! Radiotherapy session 1/15 done and dusted. I was nervous. Because away from home now (albeit just an overnighter). But it went well. To the point that once it was done I said “was that it?!” I was clearly expecting to feel the lasers etc.

had a nice stroll in south Ken with dm this afternoon and we grabbed a nice afternoon tea. Had a drink in hotel bar and am now curled up in bed ready for round two in the morning and a flight home to see my babies in the afternoon.

Excuse me while I run into the thread and scream

FUCKING THRUSH!

Of all the things I cannot cope with, today it is the relentless oral thrush. DH tries to make nice things for me to eat, and I'm stuck on soup and custard 😟

And when I say 'run into the thread' I actually mean totter, as running is entirely beyond me right now.

Sorry I’ve not been back on the thread but I’ve had a bit of a crap time. I’ve had neutropenic sepsis and a hospital stay for that, the very last day I was transferred as an outlier to a general surgery ward, care was good but as I was neutropenic I was worried about picking up something else, I’d been so used on the other ward to their ways and the fact they were wearing masks that I didn’t feel at all comfortable being where masks weren’t the norm so I asked to be discharged which luckily the consultant agreed with (he was not happy I’d been moved but agreed that I’d probably be safer at home at that point)
Also my horrendous chemotherapy has not been as successful as the hoped and I’m still showing some residual leukaemia cells in my bone marrow so the next step is to go in to hospital (on a heamatology ward) for 7-10 days for immunotherapy, this will last for 3 months then hopefully I can prepare for my bone marrow transplant.

Ive hit the ‘I’m bored’ phase at home as I can’t go out anywhere as can’t risk picking up any infections, I can’t walk my dogs for more than 5mins as it’s too much, can’t have visitors etc. the highlight of my days are hospital visits even if I do feel ill!

Oh @hennipenni that sounds rubbish 😫
Fellow haemo here (lymphoma) >waves with scant energy<

I’ve been hospitalised 2 out of 3 rounds with the same. Managed to avoid it for one cycle by being strict at home with everyone’s hygiene and they gave me Filgrastim to boost my count. This cycle they’ve decided I can’t have it. They’ll wait and see if I get sick again 🙄. It’s such an arse being in hospital. No peace!

I’ve been trying out audiobooks and doing bits of a jigsaw on the times I can sit upright for 10 mins straight.

When do you go in for immunotherapy?

Hi ohthatsjustgreat

waves back feebly at another heam comrade.
Good that you can do a jigsaw, I’ve tried reading but can’t concentrate, I might give audiobooks a whirl for when i next go in to hospital, thanks for the idea

i should go in the end of next week for my immunotherapy depending on whether they have a bed for me and the bed also has to be available at any time during the therapy when I’m at home if I need it due to the side effects. I’ll have a very stylish rucksack type bag for the pump which is leading to lots of questions but mainly how on earth will I be able to shower as I won’t be able to remove or stop the pump at all.

re Filgastrin, I’m on it at the moment for the second time, do you get the weird pulsating bone pain? At least I know it’s working this time which is good.

I’ve had a good day today, even if I had to have a sleep this afternoon!

@hennipenni no I can’t read either. Just can’t settle or concentrate. Scrolling is all I can manage at home. I guess because it’s mindless but you can get caught up in it? I’ve tried an audiobook but just dip in and out but you might have more luck. Lots of free sites to try and BBC too.

Yes to the pulsating bone pain! I take my temperature a bit before, then if that’s ok I take paracetamol with the injection in the evening. That takes the edge off for me. How are you managing it?

So will you be able to get your head straight and plan for 10 days? Do a countdown and then any less time served is a bonus right? More dog time 😉

Hopefully they’ll have advice for you at the hospital about washing and the rucksack? I’ve heard of people using these things online called medical dry wipes? Handy for a freshen up when you can’t use water freely? Might be worth a look. I know it’s not ideal but this is a head down 10 day plan that you will get through. (Mainly because what bloody choice do we have, right?!)

Well look at me up at this time?! 😆 Normally in bed by now, but up every 2 hours (thank you steroids and the Cyclophosphamide drop-kicking my bladder function).

I hope tomorrow is another good day for you.

@hennipenni and @OhThatsJustGreat that is really rubbish for you guys. It’s hard enough without that. I took loratadine with my filgrastim and that helped with the side effects (on oncology advice).

I have the phosphate infusion to come as my liver played up through chemo. Currently settling into letrozole side effects.

@dancingwhilstfacingthemusic i have chlorphenamamine here as an anti-histamine but haven’t needed to take it for itching yet. Will keep it in mind as a knock-out for filgrastim if needed, thank you.

So many different drug regimes were all on. After the first cycle, the chemo actually made me feel better because the lymphoma had made me so ill. It’s now past the cross over point and the cure is worse than the disease.

What’s tough is looking forward to that but ending and then finding that “oh no, sorry, it’s not worked as well as hoped, start this…” or yes, that something else has been buggered by the “cure” and now that needs extra love. All we can do is plough on. There’s a lot of “head down keep going” in this journey!

Enjoying a quiet Sunday morning here in sunny jersey before reality hits and I have to start packing for a week away. Not just for me but for my kids (they’re staying with my mum and dad).

sigh.

Excitement here. Just had a call with work re my return. I go back on a phased approach on 19 may. Eeeek!

radiotherapy 3/15 yesterday. Also did an exercise clinic and signed up to classes.

today have exercise class then a well-being session then radio.

That’s bloody brilliant @ememem84 I’ve put myself on a very gentle phased return for May too and have a couple of client calls today to line up potential face to face consults. Nervcited!

Great to hear @ememem84

Can I ask what everyone's experience with working was ?
I appreciate I am still at the very beginning of all of this but I really want to be able to continue working throughout. I hold a management position within our family business and I am the only one that does my role. I also run the behind the scenes stuff of my husbands business, again, I'm the only one that does this.
Wondering if I am being unrealistic in my hopes of maintaining this.

@AlwaysALargeSauvignonBlanc i also hoped to work through my treatment. The first 10 days after each cycle of treatment were a no-hoper, as there was no way I was fit to work ( I am also senior in a small company). In my first two cycles, I did manage to work between days 11-20. However, it all fell apart from there on in. I was severely anaemic (resulting in blood transfusions) and I have the added complication of a close family bereavement at this time as well. So i wasn't worth shit, and my oncologist basically told me to stop working also. I'm now 2 weeks out of my last chemo and have just spent the morning on work calls. Currently working 3-4 hours a day, will stop before surgery and see where we are after that. Planning to be back full-time by September.

@ememem84 and @dancingwhilstfacingthemusic , good to hear your plans for return are coming together. Don't know about you guys but I've never been so glad to get back to work!

@ememem84 and @dancingwhilstfacingthemusic it's good to have plans!

I had my final radiotherapy this morning - I'm absolutely shattered, the tiredness I was told to expect has just kicked in. Boob is a bit pink but nothing concerning. For some reason I cried in the changing room - my active treatment is finally over after 7 months.

I've pretty much decided I'm going to retire. I had planned to retire next year, but I think I'll bring it forward. (I'm 61 very soon). There's so much I want to do, and with a really long commute, plus a disabled family member I visit and do financial admin for, I don't have any time to do anything else when I'm working. I have a musical hobby, and the timings of the various sessions don't work around my working days. Cancer has made me put myself first.

@AlwaysALargeSauvignonBlanc I had dose dense chemo - I'd have found it impossible to work for the first two months when I was on EC. I felt terrible and exhausted. My appetite disappeared, I've lost so much weight/strength. Then I moved on to weekly paclitaxel - and then my mouth was so sore it was difficult to speak (a lot of talking in my job!). And still not eating really. It's not possible to do my job working from home, and a three hour daily commute, and the risk of infections, plus my weakness and so on meant work was out of the question. But that was me, it may be different for you.

EC five done yesterday, and feeling the effects already but at least I know there's only one left now, even if it's at the 4 weekly interval rather than the planned 3 - I'm assuming the worst so that I'm not disappointed. I have a call with the radiotherapy department next week so will find out how much longer I'm having treatment for.

Work wise, I am self employed and work p/t from home, my boss has been very sympathetic and just sent me stuff to do as and when I've been able. I have also claimed the minimum ESA which is applied if you work under the 16 hours per week. Usually I've kept it going except for about 3-4 days (so that's the rest of this week!) and then at about half pace for a week. If I had to travel there's no way I could do it, not would I want to really, with my lazy white blood cells!

I've just done an afternoon in my office (end of garden) and two long calls with clients. I'm tired out, boosted and will have to check what I've written in emails before I send them - but it'll be good to give it a go. I think the tiredness and potential remaining brain fog (I know!) will be the things to manage. I've decided to have people come to me for the foreseeable as going into schools is much more exhausting somehow.

@BatshitCrazyWoman Good call. A few months ago I was devastated to shut down my business, now I'm happy to be starting up with a reduced capacity but my priorities have changed. I'm working on drawing down my pension a year early - currently tussling with how much of the annual pension I "sacrifice" for a bigger lump sum and then will press the button.

@frostyfingers that's brilliant that you have one left. You've been such a superstar through this tough experience. I hope DH is doing ok.

@AlwaysALargeSauvignonBlanc I was back at my desk a week after both my lumpectomies (I work for myself in a 1:1 assessment situation). I would have found it very hard after my mastectomy and closed my business down before that operation, knowing that chemo would follow. I had 16 cycles of chemo and would have found it hard to fit booked work in as some days I was tired or felt sick - I might have been able to do a few hours on a timetable that suited me. On the final 4, dose dense EC like @BatshitCrazyWoman, I was much too tired and sicky, with sleep all over the place due to steroids. I'm 6 weeks post final chemo now and feeling that I'll be ready in a couple of weeks to ease in gently.