We're not that old but we're losing our hair... Do you still need us, now we're sixty four?! - CANCER SUPPORT THREAD 64

[WhatWouldLeslieKnopeDo]

Me again. Even attempted a vaguely witty title. Hopefully not in poor taste

If you have cancer, or you're waiting for test results to see if you do, then please pull up a chair and introduce yourself!

Some of us have been here for ages and others are just going through the testing process now, so there's bound to be someone who understands what you are going through.

Whether you are a newbie or an oldie it can be helpful to post a quick recap of your diagnosis/treatment to date just so that other posters can keep track without having to search previous threads :)

If you have a relative who have cancer then there is a thread just for you in the Life limiting illness topic, with lots of others who are sadly in a similar boat and able to support each other. Other threads in that topic might also be of interest. We wish you and your loved one all the best

Below are some links that might be useful. But feel free to ask any questions at all. Nothing is off limits here.

Cancer patients are eligible for a medical exemption card for prescription charges - there is some information on the NHS Business Authority website or you should be able to get the form from your pharmacy or GP surgery

You can find information about the individual chemo drugs or regimes on the Macmillan website here

See if there is a Look Good, Feel Better workshop near you - they are especially useful for advice on disguising missing eyebrows and eyelashes

Ellie's Friends
Something to look forward to
Cancer Research UK
CRUK science blog - this is interesting and very useful for getting the facts behind any big cancer headlines
Breast cancer care
Shine cancer support (for people in their 20s, 30s or 40s with cancer)
NHS What do cancer stages and grades mean?
Macmillan staging and grading (this is in the breast cancer section but applicable to many other cancers too)
CRUK stages of cancer
CRUK cancer grading
Don't forget the kids

Still in hospital, they packed me full off gauze and padding yesterday morning and at dinner time I haemorrhaged and had to have emergency surgery and 3 litres of blood

I seriously thought this is it, hopefully I'm ok now thanks to the lovely surgeon

purple oh my goodness you do not do things by halves do you? Really glad they could get you in and operated on so quickly. Are you in a ton of pain now? I don’t sleep for ages after an op despite really really needing to

Good gracious @purpleunicorns sounds bloody awful probably doesn't make it better but it's being dealt with.
@Namechangeforthiscancershit sorry you've having to have those conversations. As soon as you mention cancer people don't know what to say or offer.
@WhatWouldLeslieKnopeDo we have an icecream maker but don't use it enough according to the kids! May have to get it out at the weekend!
2nd chemo down yesterday. Felt a bit nauseous last night but I think that could have been the combination of fasting, tiredness and time of the month. Taken my sickness tablets and steroids and will have a nap once the kids are at school.
How's everyone else this morning?

Hi everyone, haven't been back since my diagnoses of Hodgkins Lymphoma stage 2. Just finished my 2nd chemo and finding it hard to keep up with the different stages of symptoms that are plaguing me. Managed to get the nausea stopped by keeping the tablets on a strict regime. Can anyone help with what to take apart from paracetamol for the joint and other pains that are keeping me awake at night and during the day? Spoke to the ward to ask them but they only suggested paracetamol. It is wicked how you get a solution to one problem then another raises its ugly head. Hair loss is now happening so looking into hats etc. Also feeling very cold at night taking hot water bottle to bed. Any suggestions would be gratefully received.

purple that sounds very scary and so glad your op was a success. Thank goodness you were in hospital when it happened and they were able to deal with you immediately.
Looks like you may be in hospital for a while now whilst they monitor you. Thinking of you & hope you are being well looked after in recovery.

mymar Sorry you find yourself dealing with all these side effects at once, my new chemo does similar to me. I was told to start with paracetamol (if no temperature) mix it up with ibuprofen if no improvement (alternate meds each dose) and then try co codamol. The nurse on the chemo ward told me to call if that didn't work as she has stronger cocodamol meds she can prescribe.
I have a beanie hat I start wearing at bedtime. In all honesty I end up overheating at some point as I am also having hot flushes! When not overheating I had layers on and a really warm scarf/wrap plus fluffy slippers. My beanies came from an online shop called bold beanies, but you can get them from a lot of places if you search online.
I hope that helps

ranout glad yesterday's chemo was ok, I hope the nausea passes quickly and you don't feel too grotty. My worst days are days 3,4& 5 after chemo, but had nausea immediately on the EC.

I am still keeping everything crossed for no dire rear on the school runs. I still have it, but have thankfully avoided any embarrassing incidents so far. I have been awake since 2am today (no idea why) so plan to go back to bed once I have dropped the girls off today. I hope everyone is feeling as good as possible today.

purple I hope you are recovering well after the surgery and transfusion. You must be in shock. Be gentle with yourself. I hope you have some nice distractions to keep your mind off it all.

Tayto sorry you'll still need colonoscopies, but definitely better that they keep an eye on things. How are you feeling generally?

Dulce great news about the scan :) and good luck with the hernia op

Namechange yes I had oxaliplatin previously. Nasty stuff! And I really missed even just cool things let alone anything cold. Sorry the symptoms are troubling you too. I also had a couple of years of minimal side effects so even though I knew the cancer was there it has come as a bit of a surprise now that it affects my day to day life. I hope they can help with your cough/breathlessness. It's hard work trying to explain the situation to people! Fingers crossed for your next appointment. You could ask for sleeping tablets if it's an ongoing issue. I've just had a first good night's sleep in a while and it's made such a difference. Bloody steroids.

I find those comments hard too. And the making plans for "when you're better..." smile and nod seems to be the only way because however much you explain it goes in one ear and out the other, I think! People just want to be "optimistic" to the point of delusional sometimes.

ranout I hope you feel better after a nap :) did you do the cold cap this time? I hope it wasn't too uncomfortable

mymar sorry you're suffering with the side effects. I'd ask for tramadol or something personally. Paracetamol clearly isn't cutting it. And yes to codeine and ibuprofen if you're able to take those. When are you next seeing your consultant? They might be more forthcoming than the chemo ward. I got some cosy sleep hats from Anna Bandana. I still wear them occasionally even now my hair has grown back as it's quite thin and it does get chilly at night!

noodles have you spoken to the chemo unit about the diarrhoea? They might want to tweak your medication or do a stool test just in case it's an infection, as it's been going on a while. I hope you manage to catch up on sleep this morning :)

I'm seeing my oncologist later to confirm my new plan and get the results of last week's scan. Hopefully nothing too catastrophic... we shall see!

Hello lovely lacies...I rarely post here now as over a year out of treatment for breast cancer...but do still lurk and hop on if I've got something constructive (Er I hope anyway) to say
Thinking of you all so much and Leslie I hope your appointment was what you were expecting or better... I think you're marvellous!!

Well, it turned out to be a surprise. But a good one! Last week's emergency scan actually showed good results compared to previous ones so they were wrong about the chemo having stopped working. I'm going to carry on with the same regime for now and see how it goes :) a bit of a rollercoaster after having accepted it wasn't working and them expecting the scan to show progression. Now I just need to get a handle on my breathing issues!

How are you freddie? I can't believe it's been over a year

Leslie am bloody delighted for you! I know these things never feel like a celebration but it sounds loads better than you were expecting. So more chemo rather than Longsurf? Hope they have a good plan for your breathing, or do they want more time to figure that out?

Yeah @WhatWouldLeslieKnopeDo that's fab news. Hope you'll have a little celebration tonight.

So you're sticking with the chemo Leslie? Good news!
Dulce good news for you too!
Noodles chemo just keeps on giving doesn't it?

That's fab news Leslie.

purple Hope you are being looked after well, it sounds like an horrible experience

Leslie, I am de-lurking (have previously posted when my lovely mum was going through chemo for BC... As a clinical scientist /radiation physicist I was all over the radiotherapy bit but clueless about the chemo, so you lovely lacies provided so many practical tips) to say how happy I am that you had such an unexpected result!

Have they gained any insight from the CT scan as to what could be causing your recent troubles? I hope there's something that can be done to help ease your discomfort!

Waving to everyone else, old and new

Does anyone have a picc line at the moment and feel like answering a gross question?

Fantastic news Leslie! So pleased for you and the fact you can still make cakes for the chemo ward

I'm home and feel absolutely rubbish. I also ended up having an ablation and an extra bag of blood and my kidney function dropped right down so I had the most horrendous back pain. I've been sent home with 2 lots of antibiotics and iron tablets

@Namechangeforthiscancershit I have a picc line I've had it about 3 weeks. I can try and answer a question.

ranout I may put you off then! I should say I had a line from Sept to Dec last year and it was totally brilliant. No problems at all. Now I have another one which has been in about a week and it’s leaking quite a lot. Not blood just gunk it’s not nice. It’s been pretty much since getting it in. It doesn’t smell gross so I THINK not infected but I’m
not loving it. Did anyone warn you anything about this? I didn’t really ask any questions because I had one before so thought I was quite the expert!

That's fine @Namechangeforthiscancershit I think from everything I've read there shouldn't be anything leaking. Can you call whoever cleans it for you in the morning? My lot seem to be pretty hot on getting you in for anything your not happy with. One lady I sat next to yesterday during chemo said she'd been in every day last week as hers just wasn't right and they kept sorting it for her. Good Luck.

It’s next due to be flushed on Monday so I probably need to get seen before then. Ugh. Cancer is so much admin sometimes! Thanks and sorry for the TMI!

I’ve just had a mini google (I am so religiously anti googling) and it looks like it might be that I need “lymph drainage” whatever the hell that is. I’ve been conditioned to get upset any time I hear anything with “lymph” in. I have two full on days at work coming up which I’ll no doubt use as an excuse not to go in to see anyone but in reality it’s times like this I find it so hard not having a partner (looooong story) to go in with me, and I don’t feel like I can ask friends to take time off work. Family come up for big appointments but things like this just end up with me sitting at hospital for hours on my own getting upset.

Self pitying rant!

Leslie have you hit the ice cream tonight?

Purple so glad your home but wow what a 24 hours you’ve had.

No worries @Namechangeforthiscancershit I was only saying the other day I'd like to get back to a bit of work but in between all the appointments I'm not sure how many hours I can commit too! I think the amount of time at appointments is something no one realises.
Have it checked tomorrow, you don't want it to go dodgy, make sure you take your temperature as well!

Aghh YOU’RE not YOUR I must be ill!

Good point I’ll go and take my temp now, thermometer is next to the oven which has a creme brûlée grilling in! Double win.

Delurking to say hi to everyone and in particular my bowely buddies dulce, tayto and of course Leslie!! That’s such fantastic news about the chemo and long may it continue! Kick its’ ass!

purple you are a legend - what a dreadful time you’ve had and I can’t believe how you blithely say ‘I haemorrhaged everywhere’ (or words to that effect) and then just carry on chatting on here! I am sending you healing and kidney vibes for the next while and hope you get some rest

to everyone else in the meantime as chemo brain has robbed me of any other names

AFM I have just been immersed in trying to make our house a home and get the boys settled into their schools so it has been hectic.

I have to work out when to go back to work and have a meeting next week to speak about it. Not overly keen tbh but I know I’ll feel more on the ball if I can get some routine going... just also trying to find ways of putting cancer somewhere in my life without it being too prominent - not sure if that makes sense! I am either consumed with it or ignoring it and need a halfway house - any tips appreciated!

addle I find work really helpful, but I don’t have DC so much much less to juggle, plus my job is not at all physical and I can pretty much take breaks whenever. So I know there are a huge number of factors. But for routine, distraction and a sense of normal life, I’ve found it great.

Honestly though I find that I veer between the two extremes exactly as you say. It’s either on my mind constantly or I distract myself so successfully that it comes as a bit of a surprise when I remember. So I have lots of empathy and not a lot of advice.