Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

I'm going to the gym. It's the first time in many weeks, and I don't know I'll be able to do much, but even a short walk on the treadmill and a short swim will be better than lying in bed feeling sorry for myself.
Now all I have to do, is actually get out of bed and go

@SierraSapphire Thank you so much. I just want to get on with it. Having to learn the art of waiting and being patient are possibly the two biggest lessons I have taken thus far from breast cancer.

A question for the hive mind. Am heading to the supermarket later. Is there anything you recommend I buy to eat for the immediate few days following chemo? Thank you.

PS. No ginger tea as it is guaranteed to make me feel nauseous!

Getting out the house and to the gym is most of the battle. And you can do this. A nice relaxing swim, some floating on your back - will be wonderful for you. Enjoy.

I've been having difficulty getting my Niraparib. I ran out last Thursday and my prescription should of been at the local Boots to pick up. I had been trying to sort it out for about a week before running out. The specialist nurses have been liaising with pharmacy and have encouraged me to put a complaint in as they say it's not acceptable.
I'm not the only one with a delay in treatment due to pharmacy it's happening to a lot of their patients.
So if anyone knows of anyone working in the Bristol Royal Infirmary pharmacy please go and give them a poke! I might offer to go in and dispense them myself . I'm not a pharmacist but I was a nurse so I know my way round a packet of tablets.
I'm better news I've been fighting for years to have my son's growth disorder properly recognised and treated. Next week he is seeing his lovely paediatric endocrinologist and hopefully will be started on growth hormone.
I took turmeric for a cold once the lovely lady in the local green grocer gave me some when I had a streaming cold. Not sure it did anything but her act of random kindness cheered me up.
Do you think people think it helps cancer because it's in the name tumour -ic?😆

Sorry for the delayed response @lucysmam …I’m trying to ease myself off spending so much time on my phone! The Lush bar I use is called Boost, shine and invigorate. It’s red if that helps!

@doublec - I found chemo not nearly so bad most of the time as I feared. There were days or hours I felt rough, but it wasn't all the time, and it became relatively predictable as the cycles progressed. I also felt like the whole thing was a manageable, finite 'project', a task to be completed. I went for a walk every single day, even when I didn't feel like it and the weather was grim, and I think having that as a focus helped too. I hope it's manageable for you. Re the food, it's so variable from person to person, and even day to day. Don't stock up on too much of any one thing. In general, bland, slightly sweet things were what I craved - it was cheerios with very cold milk for a while. (Don't normally eat cereal.) But I still have loads of tins of rice pudding I bought because I fancied it once, and then never wanted it again!

@doublec good luck with chemo start, I'm hurtling towards third next week, and despite fevergate it's better than I thought in a way. I have noticed I'm drinking litres of sprite ( usually hate the stuff) as water feels and tastes like diorolyte and iced lemon tea. Food wise, so hit and miss. Wouldn't buy too much of anything. Mashed potato has been a saver, frozen pineapple and protein added yoghurt. Scrambled egg and black pudding was a yen one day...

I’m loving your kitchen. Also the update on your son. That was some meal he packed away but I had to google Aligot. It sounds delicious and reminds me of the Tartiflette some French friends cooked for us on an open fire when we went camping one weekend. It was all crispy and stuck to the sides of the pot and I still think about it. My son has profound difficulties with eating due to sensory issues and he lives on a rotation of a roast chicken dinner, a loin chop dinner, a steak dinner and the occasional spaghetti or lasagne. He can actually smell what I call invisible odours. He’s like a bloodhound but I’m thankful for what we can get inside him meal wise though I doubt he’ll ever do better than 4 portions of fruit and veg per day. But at least it’s something.

I was so happy to see him this morning when I got home. He’d actually got into the staff bed in their duty room last night and was fast asleep with the nurse trying to sleep on the sofa. He was up in a flash though when he heard the gate opening and had found his sweeties in my luggage within minutes. All morning he’s been in and out of my room showing me his tummy because he was guilty about the sweeties and only settled when he ran up and down our flights of stairs 30 times. It was too hot for him to go out and do his usual 40 rounds of the pool which is about 65m all the way round and that he does after every meal. It works for him and used lost 35 kilos of medicine induced weight over the last 5 years. But going to the gym also helped with that. He’s also been twiddling my elbow to his hearts content and is settled and happy.

You mentioned stopping someone coming in to see your son - I love it that we’re just so good at instinctively knowing what’s right for our adored ones and what isn’t.

Good luck to your daughter today.

Thanks FarfromBirdie I am very jealous of your wonderful swimming pool and it being warm enough there to swim outside.

My DS is also a heavy meat eater and DD pointed out the other day he's a very impressive junk food eater😂but we are just very glad he's eating after becoming skin and bones in the hospital due to drug that went wrong. He still looks very thin but there are good quantities going in. I started drinking juice from fresh limes with water as part of trying to lose Tamoxifen (or whatever) weight instead of elderflower cordial as I dislike plain water and DS keeps taking the limes to eat them himself which is good. I used to drink lime juice and water and lemon juice with water when pregnant with him as a craving so maybe he inherited that. Glad your son is doing well.

We have outside of house on day 2 now, still after the elusive half day left of kitchen fitters and to remove their stuff though kitchen people and outside together would be a bit much. The outside is being done by a mother and daughter team who finish at 3pm which is good for us to.

Food in chemo varies - I found little and often helped rather than bigger meals. Sometimes I needed heavy in iron things like spinach or steak, sometimes was off creamy. I kept my taste. I used to have ice lollies in my chemo (with coolbox) all the time and may have helped keep my taste and no mouth ulcers. Ice reduces chemo going to an area. Generally easy to cook things or someone else to make helps. My DH did all the cooking which was perfect. I found it a bit like pregnancy where you could have strong but suddenly changing views on what to eat.

Thanks FarfromBirdie I am very jealous of your wonderful swimming pool and it being warm enough there to swim outside

We built this house round my sons needs for when I’m no longer here to look after him. The plan is that one of my children and their family will move in and live with him and his care team as there isn’t any social care here and he’s always been at home with us. The carers are just something we’ve had over the last 10 years once I got a bit older. They’re angels in disguise and we live together very happily as a family. The idea was that should my son ever get to the stage when he can’t go out he can still have a good life at home. The pool made sense as he likes swimming but it’s the size it is because everyone in the family is a serious swimmer just like you. They want to get in and hammer out 20mts before turning. Me on the other hand - I do a very lady like doggy paddle and haven’t been in it for 18 months. That’s about to change though because your posts about your swimming have encouraged me to book swimming lessons so I can use the pool properly. It plays a huge part in our family life and I really should use it.

re fast food. My son will eat a pizza from Pizza Hut every Friday at 4pm exactly and on a Saturday he’ll have the same McDonalds week in and week out.

I think that would be great to learn to swim more Birdie I love swimming and its especially nice if can do outdoors in nice weather or even not nice weather and beautiful scenery. Some swimming teachers are a bit strict though, hope you get a nice one. I was thrown in a pool at birth more or less. Always loved swimming and when I swim a lot I never get ill, feel much stronger and much better mental health. Its also good if joint aches as its an exercise much easier than walking or running then mostly.

Wow @ForfarBridie your house sounds fabulous. My seven bathroom mansion is actually a Victorian villa that was a Christian B and B with four rooms with en-suites. Each floor has a bathroom too so that makes seven. The basement is a separate flat that DH uses to run his bicycle business although there is overspill too. It’s lovely to live in on top of the cliff! But hard work to stop it leaking and draughty.

Ooh @TopOfTheCliff that's like my fantasy house! What a lovely spot.

Another one who's feeling the swimming love at the minute - there's something very restorative about it especially if you can do it outdoors.

Scan results tomorrow, alternating between catastrophising and being quite que Sara Sara about it.

Food bank would like that rice pudding @dotty2 😊

Fingers crossed for you

@TopOfTheCliff your house looks like it belongs in a novel!

I really wanted salt during chemo - maybe because it enhances flavours? & dilute juice by the bucket. I'm still drinking more dilute than anything else at the moment too - not the best when it's colder 🥶

Finally found a dentist for a check up & look at my tooth, so I can start the Denosumab. They can't fit me in until mid-next month though but it's better than nothing.

Also had a phone call today booking me a telephone consultation for tomorrow to go over CT results from 2 weeks ago. I'll mention my nails too - no more have separated thankfully. Just need to remove toe nail polish and check them before tomorrow.

I've been exceptionally bored today, pottering about 🤷‍♀️ I've done loads, had a nap & just blocked out Stick Man peg dolls. Brain really needs something going on!

That's a beautiful house Top, reminds me of Enid Blyton or Agatha Christie.

Good luck with results Clash

Yes I get the salt thing too sometimes LucysMam and I normally hate salt.

DD did her Oxford entrance exam today on her 18th birthday 🎂 Lots of red velvet cakes here. More of outside of house done today, we have a thatched cottage with lovely garden, would absolutely love a swimming pool and thatched cottage but really rare to be allowed that with grade 2 never mind the cost.

We have painted the house since that photo was taken, also replaced all the windows and the top of the roof! It’s a money pit. Also a nice wisteria has grown up above the hot tub. It’s a real commitment owning a period house.

@Tilly that made me laugh when you said that about nipples in front of your Son, I could very much imagine a similar scenario.

Sorry I haven't been able to read all of the thread updates, but wanted to wish everybody all the best.

I’ve just managed to kill a thread on chat - about whether people have mistaken peri menopausal symptoms for cancer.
I didn’t, but I know of two people with same cancer who thought it was just the menopause…
that’s what you get for being honest.

In my defence- mine didn’t present as a lump or obv symptom (well it did, but just in a vague, didn’t make sense way)

I think there needs to be education about the fact cancer is sneaky and can present as something changed and persistent or some symptom that doesn’t make sense. I had pain in my scapula on burping since about 2020, and the GP ignored it, and then so did I.

Feel a wee bit bad about the thread. The OP is probably absolutely fine, but I also think maybe I’ve done someone a service.

Confession over! Got that off my chest. Was I ok to do that? Flipping cancer, constantly makes us feel bad.

Yes I think a lot of us have found sometimes cancer can kill a thread and people prefer the you are immune to it and hrt will solve everything message and everything can be blamed on peri menopause. I think people need to be educated though. I wish I had been warned before.

@Silkiebunny happy birthday to your dd 🥳 I hope she's had a lovely day despite the exam, and that the exam went well?

@Whattodotomorrow I forgot to say thank you in my last post 🙈 We're off for a wander of Hobbycraft and Meadowhell next week so will pop in for a sniff of it then.

@doublec I think you must be right that it's for other clinicians. What confused me was that the letters usually only go to the GP and patient, who presumably already know each other better than consultant-patient.

My favourite consultants (apart from one) don't do that or include your entire CV either, they get straight to the point which I really like.

I got labelled "delightful" too this year, which made me laugh, because that sounds like a sweet little old lady, with the emphasis on the old 😬😳More accurate would be "anxious wreck" 😆Maybe they were trying to cheer me up because they knew I was having cancer treatment; I definitely don't feel delightful. I suspect they've got a template and copy-paste stuff in like our treatments etc. It seems so old fashioned and judgemental to me, and emphasises the power imbalance too.

@Tilllly That's absolutely hilarious about your DS, oncologist and BCN 😂

@doublec Good luck with your chemo! Regarding food, my sense of taste didn't change and neither did my appetite on any of the 4 chemos I was on. Although a lot of people do get a metallic or cardboard taste, not everyone does. I hope you don't have problems with that and can enjoy your food.

@TopOfTheCliff I love your house! Such beautiful windows and you must have spectacular views too. It must be stunning now with the wisteria.

@ClashCityRocker Fingers crossed for your results tomorrow.

@Silkiebunny Happy birthday to your DD! 🍰🎂🍾 I hope she did well in the exam.

We went on a sort of day trip today, but were rather unlucky with the weather. It's been sunny recently, then decided to rain today! It was a good excuse to have a nice pub meal though.