Cancer Support Thread 98: support for those diagnosed and going through treatment

[FcukBreastCancer]

Hello 👋

@Nonamelasssummoning strength is the hardest part, and cancer is sadly like so many things we deal with in life.
All you can do is that very patronising 'be kind to yourself ' but if all you do is get out of bed, brush your teeth and take whatever pain meds you need that is enough.
A bizarre as it sounds the bit I was the sickest was the simplest, simply be. That's all you need to do, nothing else is relevant

When I received my cancer diagnosis I told family and friends and now have prayers coming from so many different faiths. It’s such a good feeling that I like to share it :).

@Nonamelass I just got my PetScan results and they were normal (for me anyways). No spread of the cancer and I continue the treatment I’m on. The chemo throws me for a loop but it’s still working.

Thanks. Yes you’re right. Îm just going to give in as it were and just be.
I’ll take a znax before I go ( aneastiste advised
it) and one the night before and just float through it hopefully. There’ll bandages and drains and visits from nurses follow up appointments … sigh.
Hope you get some news on a scan soon xxx

Yay 😀 that’s great news @Sbmpp you must be relieved. Hope you enjoy feeling lighter today and feel well enough to fo something nice and able to eat what you want and not just chicken xx

Oh no, @ForestFlowerFairythat ENT appointment sounds horrible, and very invasive. Waiting until March seems too long when previously they have said February. I do hope you can get some better answers soon. How are you feeling in yourself?

@Connemaraa2-4 weeks sound like a long time, but I realise that it’s better than the 5 months they are suggesting. It would certainly not be rude to request the results earlier. I am angry on your behalf about a 5 month wait! I hope that the biopsy results are good and the risk of metastasis is very low🤞💐

Please join us @Nonamelass😊 coffee all round! I may be trying to work too hard now that I’m back. I am going to take this afternoon off and walk to the garden centre and get a cappuccino I think 😊

I’m sorry to hear about your lovely mum. I think you are right about age - at our age we have elderly parents and younger children leaving us squished in the middle, tired, and trying to service both ends while attempting to look bright and happy when we don’t feel it. I hope you get your operation soon. And the znax is effective. The drains and appointments mean that the operation has been successful. Hugs back at you 💐

@Sbmpp🍰 ☕️for you - don’t share! Thinking of you too. I hope your name is on that list! I am not a religious person but I love the idea that people are praying for each other. I’m pleased that your Pet Scan was normal and the treatment you are on is working.

Foreign Tea bags are just the worst @Nonamelass! This is probably outing but I managed to buy 1,100 tea bags on my online food order instead of 100 😂 Nobody else in the household drinks tea so I was giving them away and making tea for just about everyone I know for about a year. I did get there in the end but it did take the better part of 12 months!

😂 at 1000 teabags!! That’s the sort of thing I do…that or order the cutest dolls house size of something! I know what you mean about appreciating the prayers - it’s not as one thing I do but I know my Mum gets a lots of support from her parish and she feels it helps 🤷🏼‍♀️ which is great I guess?!
the continual wait for the next appt/scan/session is definitely wearing, I’m trying to focus on a good thing each time - just little things which make me smile!
Hope everyone has a good day, it’s stopped raining here which has to be a start!!

@sbmpp yes to prayers, we all need them, this is so hard,

@Nonamelass I cant read any of my letters the phone, the appointments, the letters all terrorise me. I have been pushed up the list for counselling - she said it sounds like I need it. I am tired too its exhausting in every way possible.
is it raining endlessly there too?

@Ventress three trips to hospital is two too many why cant stuff get done in one go. How is the letrozole going? I have seen its been put on my list of potential stuff to come and am not keen.

Hahaha 1000 tea bags 🤣🤣🤣 easily done I say. Also, just to add, you CAN reject things in your order. Say if you just brought 1000 tea bag’s and nothing else, if it’s a grocery delivery you can reject. Hell, even if it’s another delivery I think you could reject and it would return to sender.

Thanks for making me laugh this Friday afternoon 🤣

@Connemaraa I think anything a cancer pt. asks for is reasonable. It’s a fight for our lives here (imho).(I just saw that I didn’t send this. I still feel the same way. I guess I’m a bit muddled).

@Ventress 1000 teabags 😝!! I love it. At the beginning of Covid I was overwhelmed at the empty store shelves and the prices on Amazon for sugar or bread etc. I finally saw something I could afford: Baking soda. I went crazy and ended up buying 40 pds of baking soda 😝😝 by mistake! We’re still using up that baking soda and my oldest daughter keeps reminding me to ask someone before ordering on Amazon. Yeah, for sure dd.

I’m not sure what I’d do with 40 packets of backing soda @SbmppGood luck using it all!

I could have rejected the 1,100 tea bags but it was all they had and I was worried I’d end up with months of no tea bag’s at all. I was a bit obsessed with tea bags during the beginning of Covid. We has frozen milk and eggs were almost impossible to get too. I guess I just thought that at least that would be one thing I didn’t need to worry about 😂

I’m sorry you are so stressed about the letters and appointments @cantbelieveIamhere. I seem to get letters each day now, all followed up with questionnaires about how I was treated. I could live without these.

We have so much rain too. There was a story on the local news from the local university where they’ve measured the rain fall in January and we’ve basically had half of the spring rainfall in one winter month. Mad.

I’ve almost finished the second round of Letrozole now. It’s okay, except for the menopause. I definitely have symptoms - night sweats and I’m tired a lot. Although DH thinks the tiredness is caused by the bone infusion- Zoledronic acid rather than the Letrozole. He may be right. I have one more day of ribociclib then a week off.

Hey everyone hope you’re all doing ok with treatments and recovering.

has anyone claimed any help whilst having treatment/been diagnosed ? Like universal credit, grants or had a work capability assessment?
aomeome told me I should apply and also speak to council to get a reduction on council tax?

@ohdoriswheresthesaladwe weren't entitled, but, if you are entitled don't forget to check in with your energy company for a reduction in bills and also see what if any energy saving grants you could get. I've wanted solar for years, but sadly didn't qualify for any benefits so wasn't eligible but that won't just help for now but long term if you can
I believe others here have claimed PIP, I don't think that one is income related but it is usually refused on the first application

thank you @ForestFlowerFairyi don’t think I’m eligible for pip apparently. But I will check with energy company thank you for that.

@Ventress what wouldn’t give for a few extra inches of rain. More memories of covid seem to pop up in my head now and they’re not good. I’m due to have an infusion for bone loss. The side effects I’m not particularly happy with but no alternative. However I guess the last 2.5 yrs have been filled with some sort of side effects 😂.

Hi folks. I'm still here. Last radiotherapy tomorrow. So I get to ring a bell or something, if I want.
My skin is more sore and I'm on and off tired. I've been unhealthy with diet last week so need to work on that.

So I'll have some adjustments to do once I have no appointments etc. I still have a sick note so wasn't thinking of working straight away.

I have applied for a blue badge. It’s not for the primary bc but for the secondary lymphangitis and general wobbliness. I haven’t applied for pip or carers allowance. While DH and I are earning I don’t think it’s appropriate. As has been said, it’s generally refused anyway. I’ve not heard of a ct reduction unless you are the second adult and are living mainly in a care home?

you can have our rain @Sbmpp😊 we have had loads of it this year. DSiL was here this weekend and she is in the West Country where it’s been very bad flooding. She says it’s really uncovering, or creating, pot holes.

I’ve had my next ct scan appointment through. It’s in a month’s time (fine).

Talking of over ordering, I bought a kilo of Cadbury mini eggs for us all to share this weekend. I still have about two thirds left in the bag and we really tried hard to eat them!

I’m glad you are on the final radiotherapy @FcukBreastCancer. Be careful of that tiredness. Glad you aren’t going back to work straight away. Ring that bell if you want to!

If you have the bone infusion @Sbmpp just be aware of how tired it can make you and plan an early night. Also take the “Adcal D” tablets they should give you and prepare that your finger and toe nails may be ruined for a while. It’s fine though - no issues.

Hi all, hope you’re doing well. @FcukBreastCancer will you ring the bell? @Ventress @ohdoriswheresthesalad you can apply for pip and it’s not means tested. And like you said, a blue badge as well .

my pip got approved first time, however they said I could only “start” it from when I started chemo, as that’s when I started to struggle. I have every side affect under the sun.

i also couldn’t get ct reduction or energy bill reduction but the pip helps with things like that and also when I will be unable to work. My work is terrible with sick pay and I’m anxious that I might be too unwell to work at some point and not be able to pay my bills, im aware it’s all accumulative. And I’ve got the worst to come.

good news I am a lot better today than last week, been having my chemo all day…. Just a few more hours to go 🥳

@Bangersndmashi was told by MacMillan I didn’t qualify for PIP? I’m having radiotherapy and hormone treatment is that why?
i only get statutory sick pay which is £488 a month vs my usual £1500!

i hope you’re ok, final countdown now not long and you can go home!
glad @FcukBreastCanceruou are on final one that’s amazing. I’ve heard the tiredness is rough. I’m still waiting for my treatment plan! No word from oncology!

I’m pleased you are feeling better today @Bangersndmashbut not that you have had every side effect going. fab that you got pip straight away. I’d heard that was almost like gold dust! Must be reassuring for when your employer is difficult and help allay that worry about financial pressure.

@ohdoriswheresthesalad im not sure I’m not a professional BUT I know if you’re struggling and or unwell you can claim. It’s all point based; have a look at it online. If you have daily struggles, eg walking, being active, making your food, daily activities, if you struggle with any of this you might be eligible for pip.

without being specific… unless you want to… do you struggle with any of these things? And how long is your treatment plan? Have you started yet? Door to door it took about 3 months to assess my pip and then another 2 months before I quality to receive anything, just to give you an indication of time. They are pretty slow at it all.

@Ventress it has really helped. My employer is such a… I can’t think of the word. They are really confusing. My personal manager can’t do more to help, doesn’t want me under any stress; so so supportive and a genuine friend. The company - terrible sick pay; hardly anything. I’ve been really anxious about it all, so trying to save where I can which is quite difficult (not received any pip yet).

i wasn’t aware it was like gold dust, but as I mentioned in my previous post, I do have every side affect going and generally, although I keep it together for my kids, every day is an internal struggle. I get out of breath just walking up the stairs. My blue badge application was pretty straight forward too, and that was quick.

ive just re read your post and i think if you can afford a kilo of mini eggs in this economy then you must be a millionaire 🤣😉