Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

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Ooh @Atreus that looks amazing! Well done to your dd 🌟

Hi @PollyCreo 👋 With the questions to ask - I struggled to actually think of anything at the time but then things occur to me now and then(that may seem silly/pointless sometimes tbh 🤷‍♀️). I designated a little notebook for jotting them down in, so I don't forget in between appointments. I know that doesn't help with actual questions, but you're definitely not the only one who hasn't got a list as long as your arm of them.

@craggyrat enjoy the Great Yorkshire Show. We used to go every year, with my dad, and meet up with another couple and their friends. Haven't been since I was little though.

Off for bloods this morning, then breakfast, with my dad. Then home to chill & paint Goldilocks display props and hunt for something to make a Hansel and Gretel house with 🤔 I think I need some sort of box with hinge maybe that could have a triangle roof added. I might look in The Works tomorrow after chemo.

@Atreus your wig looks great, and well done to your DD! Mine seems to have been relatively academically unscathed too, she started a nursing degree in September as I was embarking on chemo. I said the same about my wig too, DD came with me to choose it and said "It's just like your hair, but combed!"

@Florabritannica - that's annoying, has that happened because of your cancer? I'm self-employed, but I had just started a project that was likely to relaunch my business in a different direction and one I'd wanted to go in for a while when I got diagnosed. I limped through the project, but didn't get to where I wanted to get to, I've got a lot of catching up to do now, but I'm still knackered from last year. It's so hard, I want to get on and do things, but I know I need to rest.

@SierraSapphire That sounds really tough. My situation isn’t to do with cancer (nobody knows yet): basically I had a career change into academia which is a heavily competitive market and one in which white middle aged women are not particularly desirable. This was an internal post that I had basically been doing for four years and everyone had been making noises about wanting to keep me on but when it actually came to it they didn’t even interview me.
But enough of this - let’s all admire the wonder that is @Atreus’ wig! I’d been planning just to roll with hair loss, but this has made me reconsider.

@Florabritannica that is deeply unfair and annoying. Are you still up for the battle with a sexist ageist establishment or are you thinking maybe the universe is pointing you in another direction with cancer and a career knock back? Maybe this is a sign you should think about the big picture and what else you might want to do with your life. I may be wrong and you will just double down and fight.Have you asked why you weren’t interviewed?Presumably you will now stop doing the thing as it is New Persons responsibility. Does that mean you are out of a job? So cross for you!

@Atreus that wig is awesome. I might revisit mine as my hair has suddenly reached the bog brush stage. I look like a poodle or one of those polish chickens or maybe a seventies boy band singer. Most Macmillan/ Maggies centres seem to have a wig fitting service @isaxx

Having a quiet morning as yesterday’s antics have made my feet blister so I will have to Uber around today. DH didn’t believe me when I said my feet were killing me.

@TopOfTheCliff Yes, I’m out of a job - I was doing a postdoc which finished in February. If this role had been advertised then I would have got it under redeployment. The academic world is deeply dysfunctional (see current industrial disputes) and I’ve come to realise I’m better off out of it.
But this is tough - it feels personal in a way that the cancer doesn’t.

@Atreus you look fab! Well done to your dad, must be such a relief to you that none of this shitshow has derailed her, I worry about that with my kids.
I’m off to see my solicitor about the divorce - not great but feels good to be doing something.

@Atreus that wig looks amazing! You look great.

I haven’t posted for a bit but hello to any new members on here and sorry you have had to join us.

It’s my last day in work today before finishing for my APR op in a few weeks. Feels really weird and so far I have held it together but I am really gutted on the inside that my job is being advertised for someone else to cover. Is that daft?! I want my manager to have help but I am secretly worried in case they are better at it than me! @Florabritannica I work in HE but in professional services. I am very sorry to hear you didn’t get the job you wanted, that’s shit on top of everything else.

I'm mid-50s @Florabritannica and I started to feel a few years ago that my age was affecting my ability to win contracts. Other similarly aged friends looking for jobs have said the same. That's why I've been trying to pivot my business, but my DP's health problems, Covid, and now cancer, and my life savings rapidly diminishing with no financial support, have scuppered me. I've got friends who are retiring, but with a lifetime of charity and self-employed pensions, plus being a lone parent and getting naff all maintenance (wish I'd done something about that) I don't have that option. I don't think I expected that to happen to me, nor the cancer!

If there’s one thing the last decade has taught me it’s that expecting anything from one’s employer beyond one’s contracted salary is a very dangerous mistake. What really matters is friends and family and having them around is a massive bonus when one’s going through something like this.
Ironically, the job wouldn’t have been much fun - it was a real ‘shaft the newbie’ role.

Isaxx, this is the link to a supplier of wigs to the Jewish community who also work with ladies who have hair loss due to cancer treatment as well as other conditions that cause hair loss. I’m only suggesting it because of the amount of Jewish ladies who wear wigs and I always think if I ever needed a wig that’s the road I’d go down. Anyway this was the first link that came up when I googled for you and it mentions out of hours appointments so it seems consultations are available. I hope it’s of some use for you and if not it may help you find your way to what your are looking for.

https://simmyswigs.co.uk/

@Florabritannica that's really shitty and can understand how it feels so personal. Being optimistic, it sounds like you're well off out of it.

Happy Friday everyone, sorry to hear about the new diagnosises (sorry about spelling, even autocorrect doesn't know what I'm trying to spell!). I don't think it hit me that I actually had cancer until my first chemo.

My head is finally getting into a better place post treatment as I learn my limits and start to process what's been happening. It's a cliche but I'm trying to focus on what I can do (even if it means going by car or bus when I'd have previously walked or biked it) rather than the fact that I haven't miraculously recovered from treatment after a single week! I'm sure there will be more down days to come but I feel better equipped to deal with them.

I suppose when you're in treatment you so look forward to it being 'over' and then once it's finished you realise it's not over yet. You use all your resilience and strength to get through treatment and just like it drains your body, it drains your mental well-being too.

But onwards and upwards! The sun is shining here and I'm planning on a walk into town and bus ride back for some nice lunch and a bit of shopping for a wedding at the weekend.

Atreus that wig looks great!

Sorry to hear the typical career struggles of women are not over!

I'm kind of fortunate in that I left my career in May (had been a teacher for 10 years) because of the stress it was putting on my life/mental and physical health/family. It's meant I have a little too much free time to think but also no stress about asking for permission to attend appointments.

@PollyThePixie Thank you for that link! It had not occurred to me and I have been googling quite a lot. Obviously not with the right search terms. I will see if I can get a consultation.

That wig is amazing Atreus

I finally had first haircut a year after chemo now its down to past ear length as want to grow it longer and was scared they would make it too short before. They did it OK and I no longer look like a 1980s aerobics instructor.

Sorry I'm dipping in and out of this thread so much.

Did anyone have really bad colitis? I'm on immunotherapy and restarted again after a break for surgery and oh my god who knew one person could 💩 this much! My options are ;

Ride it out

Steroids which will undo all the work the immunotherapy is doing

Add in another drug called infliximab for Crohn's disease but that increases my chance of being sicker in the long run because it's 2 immunotherapy drugs.

It's hard when they give you a choice!

Morning everyone!

Murky looking outside today 🙄 I'm half way through chemo after this morning, 9/18. Me and dd1 are heading to a local food court to mark it with pizzas 😋 Then a wander in a few shops for friendship bracelet making supplies for T.S. eras tour.

I'm meant to be finding something to wear tomorrow night too - me and the girls' dad are off to my favourite local restaurant for a proper steak. Trouble is, I don't really feel comfortable or "me" in much atm & I think he thinks I'm dressing up because I want to wear my new shoes 🤷‍♀️ Might just try smaller skinnies & hope for the best.

My stomach's now hovering between 28.5 & 29.5 inches, so an entire inch smaller than a week ago. It's very slowly going & both the girls dad, and my dad, keep telling me I should ask for it to be drained again. That writes off at least 2 full days though & is bloody horrible. I'm not sure this way's the best but it's not really uncomfortable any more & is definintely easier for me 🤷‍♀️

@TopOfTheCliff (I think it was you) the comment about channeling your inner bog brush made me laugh. Dd1 is amused by the very neat way the sides of my hair are growing back, and then the sticky up top 🤣 I hope to God it's long enough to do something with by next June. Although September's gig will feature sticky uppy hair no doubt 🤷‍♀️

@bringonyourwreckingball I hope your meeting with your solicitor went well.

That sounds grim @CoachBeardsJane - are there any diet options though? I have a friend who completely got rid of her colitis through changing her diet, she didn't have cancer though, so that might be a difference. It's the sort of thing though that you have to pay for advice around, I guess. I always tend to try and find a natural ways to manage things first, because of the issues that you raise around drugs, causing more problems. That you need more drugs to sort out! I know it's not always possible though.

Hi @CoachBeardsJane I was recently hospitalised with colitis caused by chemotherapy. I was going 12x a day at one point! I spent 5 days in hospital with IV fluids, electrolytes and antibiotics (I was having fevers so they prescribed ABs in case of infection). I was also taking codeine and Imodium 4 x a day.

I was released from hospital still taking the codeine and Imodium and have been able to step down so that currently I’m just taking Imodium 1-2 times a day and I’m almost completely recovered.

However I’ve had to take a 2 week break from chemo. So that’s enabled me to recover before starting my next cycle, which might not be an option for you. All the best, it’s absolutely draining.

Here’s some good news, I know everyone likes a bit of good news. The lab rang this morning to tell me I’m BRCA negative- this is the news I was hoping for for both me and DD 🎉

That’s fabulous news @LemonDrizzle10 - I remember how relieved I was when I got my negative, it’s like a huge weight has lifted.

I'm so happy for you, wonderful news xx

I finished chemo a month ago today, and I am really struggling at the moment - mostly with new food intolerances, not all of which I can identify yet, muscle aches, weakness, obesity which developed while I was on steroids, limited movement in my arms. I have scar revision surgery sometime, don't know when. I have letrozol sometime, don't know when. I have a phone physiotherapy appointment this afternoon - what can a physiotherapist do on the phone?

That's great @LemonDrizzle10 - that was one of the worst things for me, thinking it may have affected DD, especially as I had a cousin who died of breast cancer in her early 30s, although I did find out later that she did test negative as well.

I'm also bored and restless! I have spent a year watching telly, and am not ill enough for that anymore, but not strong enough to be fully active either - I am trying to build up my strength, but it is a long slow process

Morning all! 👋 got my post surgery results yesterday - bloody thing was 7cm!! Not 2 like they said after the ultrasound! Lymph nodes were clear but because of the size of it I now have to have a. Ct scan to check my entire body - which is quite reassuring actually - then 2 weeks after that I will have an appt with oncology to discuss chemo 😟 they will probs do a genome test to see if chemo would be beneficial depending on ct results and then at the very end of everything I’ll still have to have radiotherapy 😟 not what I was expecting but onwards we go