Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

@KimonoQueen I didnt have a mastectomy or reconstruction so haven't needed heavy duty bras. The most comfortable has been a front fastening one from Sainsbury's.

@Awhiya sorry to hear of your diagnosis. I hope you have more information soon and a plan

@Ventress sounds lovely to make a calm space for yourself.

@Ventress following the 'comfy chair' issue at the start of my journey I absolutely back your desire for a comfy little reading nook.

I cannot express the joy my chair has bought, this little space for me (and apparently the cats who I now have to race to the chair before they get there) but it's my little moment of calm.
I've really struggled to read, but found curling up with my noise cancelling headphones and listening to podcasts or audiobooks has been perfect, now I'm listening and reading along to books to try and bring back my focus a little.

Just if anyone is interested I'm reading 'wintering' by Katherine May and it feels like just the right book for now, essentially it's about the idea of winter not just being a season but the darkest moments of our life and going through them with an element of intentional acceptance but mostly about caring and being kind to yourself. It could be the perfect first book for your quiet nook x

@ForestFlowerFairy - thats weird I have been on a waiting list for the exact same book from the library.
Am reading a lot at the moment to switch off and stop dreadful thoughts! A proper space or chair and cats to snuggle with sounds lovely.

I have a lovely big pile of books beside my bed but as I'm mainly reading through the night (steroid waking) I'm sticking with the easy kindle 99p books I've been accumulating as the kindle is back lit and I don't need a reading light or glasses.

Me too @cantbelieveIamhere Have you tried journaling as well as reading?

My hope is, as @ForestFlowerFairy says, to get to a corner - a "room of one's own" where I can snuggle in and read these great books away from the hubbub of the house. I have been inspired by your comfy chair @ForestFlowerFairy and I am even thinking about getting a cat (never had one before so this would be a huge departure for me). I do miss having a dog so badly but I just don't feel that I can commit to one at the moment with everything else that is happening.

""Wintering" sounds like a really apt book - thank you, I will take a look. It's clearly popular if @cantbelieveIamhere 's experience at the library is anything to go by.

How are you @ForestFlowerFairy ? Not long until the scans now. Have your side effects lessened?

Today I am celebrating, I met my Macmillan team today who have removed by feeding rig! I have 7-10 days healing but then I'm free to go to the spa 😁
I'm also looking forward to buying some jeans, everything in the shops seems to be high rise which is a nightmare with the rig, but no more, j shall wear ALL the jeans!!!

I can thoroughly recommend cats and books and comfy chairs, so much so that I we should start a campaign with Macmillan to hand them out as a standard recovery kit.

Wintering is available on Spotify if you don't want to wait @cantbelieveIamhere

Hi everyone !! Just jumping in to say all my appointments have come through YAY . See surgeon next week .. then op middle feb. Yay. Now I’ve just got to do it all gulp 😉 Right off back to work. Will catch up later xxx

Wonderful news getting rid of the rig @ForestFlowerFairyand wearing all those jeans!

My “alcove” is ready and I have ordered a comfy chair - it arrives on Saturday 😊

Great news @Nonamelass! So pleased the appointments and dates are through for you 😀

Terrible morning at the scan place. Never having an appointment there again, this is the mobile unit supplied by a private company that clear nhs lists.
Went there first time and had a terrible time, this time it was worse. Again all men and me in a van, think there were 4
Couldnt get vein, tried everywhere except I got annoyed and stopped them when they wanted to use chemo hand - needed for Monday.

Ended up halfway up my arm, it really bloody hurt, no apology, just if I cant do this you will have to go to another appointment at hospital. I am bruised in all the places he and another bloke tried. Now not sure they will get blood tests done on friday because of the mess.

@Ventress and @ForestFlowerFairy so lovely to hear of your cosy spaces which I could do with right now. Upsetting day.
I cant seem to write anything down except its day 1, 2 or whatever and write all my symptoms down so I know what to expect next time round.
I do colour, and watercolour and do art journalling but as I am ill for 14 out of 21 days not much is being done.
If I wrote stuff down now it would only be depressing and rude probably.

@ForestFlowerFairy so glad to hear your good news and thanks for spotify tip, but might get the book for my birthday coming soon as well as scan results

@cannaecookrisotto how are you doing?

Hi all, just a wee update. It’s true you do feel a bit better after speaking to someone who’s got a plan. The haematologist was extremely nice, professional and reassuring. Chatted away to my baby, and could see she herself was upset with the situation too. Which also was strangely comforting, as if she might try extra hard to get me well again 🤷🏻‍♀️😅

But, in short, yeah it’s a high-grade diffuse large b-cell lymphoma, they’ve got me in for a pet scan tomorrow and chemo looks to be starting in a couple of weeks. Current challenge is to get the baby off the boob and onto bottles, which she is quite annoyed about.

Thank you for all your support, and also in advance for when I undoubtedly will have questions about treatments and general shite that accompanies a cancer diagnosis. I hope I can be a bit of support too - I’ve been reading all your experiences on here and you’re total badasses in how you’re handling all the things that are thrown at you. The book recommendations are great to see - after about a decade of little-to-no reading myself I’ve suddenly gone through 3 books in a week. Seems quite good at switching the internal monologue off. I won’t offer up what I’ve been reading because it’s generally been quite bleak and depressing. But, for some reason, that seems to help. 🤷🏻‍♀️

Hope everyone’s having a peaceful Monday evening ☮️ ✌🏻

@Awhiya sorry to see you here but welcome, also sad to hear you have to stop breast feeding thats hard.

Yes to reading I love reading and when you have no energy this is a way to switch off but I also nod off in the chair, thats fine too!
Of course now we all need new chairs and corners and cats but thats something else, good luck with your scan.

Definitely ask anything and rant away too if you need to.

@Awhiya I was thinking about you this afternoon. I’m glad you feel a little more peaceful and that you have a kind sensitive haematologist and that she was reassuring. So sorry to read about the breast feeding though . You ‘ll be a badass too.. you already are for managing to get through Xmas 😉
@cantbelieveIamhere Flipping heck that scan experience sounds absolutely awful. I understand you not wanting to go back It shouldn’t be like that.I’ve never been bothered by blood tests but had to have one a week for 18 weeks plus all the other times you need them and got so fed up of them towards the end. Have you got a port for chemo?
@ForestFlowerFairy wow that’s brilliant news!! Enjoy wearing all the styles of jeans.You’ve inspired me with the spotify book , may try that tonight.
@Ventress you certainly do sound like yoûve got yoûre energy back 😅😅 that’s brilliant💕 . Comfy chair ordered already ? Good going!. Cats aren’t the same as dogs but we’re enjoying having our boy, he’s a sweetheart and so many need a kind home.
Hi to
@cannaecookrisotto @Sbmpp @FcukBreastCancer @Inthebasement and everyone else
Hope you are all having a peaceful evening xx

Ps forgot to say went to a D Bowie tribute on Saturday and it was great!! Full of 70/80s kids . Had a great dance and am now on the look out for other tribute bands. Twas great to dance. That’s the music we need in our carehome. @Ventress

@cantbelieveIamherei struggled with journalling to begin, one day I was inspired to write lots and then just got a bit stuck, so I copied and pasted 3 questions that sometimes blurred into the same thing but I used it to try and see positives or changes, but ultimately to be honest with myself when I couldn't talk to family. Each day felt like a fight so the daily pause was almost like a meditation
Each day I asked:
What did I notice today?
What did I feel?
What did I move forward?
I'm not sure I wish to go back to it the journal yet, now treatment is done, and I'm waiting for the side effects to go and regain my 'normal' or new normal as everyone tells me. I'm struggling with the daily element and feel crushed when there is a set back so I'm setting bigger milestones - Rig out is a big one, wearing nice underwear and being able to stand in front of my husband is next - maybe daily prompts may help, or bigger milestones to track and celebrate progress, but ultimately you just need something to bring some peace in this crazy time x

Ah @AwhiyaI am sorry to hear your news. I hope the pet scan goes well today. Good luck getting the baby to transition- easier said than done I remember. Is she your only child? @cannaecookrisottoalso has a baby so you are not alone. I hope you have some good local support.

I know what you mean about books! I have been through so many in the past months. Plus pod casts. They are really good in the middle of the night when you can’t switch off.

I don’t have lymphoma but I had 6 months of weekly paclitaxel chemo so feel free to talk/ask as you want. Now that I’m not on chemo I have noticed how debilitating it was. I didn’t go easy on myself and I realise now that that was not the best way forward.

Thank you @Nonamelassyou sound much more upbeat too which is great to hear. Absolutely yes to Bowie 😊

I’m sorry you had such a crap time @cantbelieveIamhere. Is there somewhere else you can go? The mobile unit sounds rubbish. They will manage to get a vein on Friday though, don’t worry.

@ventress yes it was crap I have bruises to prove it. I hate to say it but being in a tiny cupboard sitting down while a man is standing in the cupboard with me and his crotch is inches from my face while he asks questions I have answered on a sheet they gave me was not my best start to a monday morning!
Next time I will insist on hospital appointment.
It has just dawned on me that we got an new armchair last week for our lounge, my son usually sits on it in the evening so really its his, but it is soft and comfortable and I have sat on it during the day so I guess that is my cosy chair now during daylight and also nighttime hours. Not quite as nice as a bedroom one though.....
How is the letrozole going?

@ForestFlowerFairy I do sometimes keep a diary but stopped it entirely when I got diagnosed. What I am glad about is its winter and I am not missing spring days, or summer days in my garden pottering about so thats a blessing.

Must now go and iron before next week hits and I cant function at all.

Hello all, May have posted on here a long time ago but not sure, just started checking in again. I have stage 4 cancer (melanoma) and wonder if there is a stage 4 cancer thread (any type of cancer) or a melanoma thread? Haven't been able to find. If not, I might write on this one. Sending positive wishes to all.

@livingwith nice to meet you! Sorry you find yourself here though.xx
@Awhiya how did the petscan go?. Same as @Ventress says , I’ve had a fair bit of chemo too so if there’s anything you want to ask ..very happy to talk about it.
@Ventress you’re right I do feel much more upbeat now I have dates and more of a plan. Feeling a tiny bit nervous about the actual op but will talk it through with surgeon next week . How are you feeling? How’s the spring cleaning?

Best wishes to everyone xx

Well, I finished my last round of chemo which would mean if this was a normal (if there’s anything normal about cancer and it’s myriad of side effect etc) cancer cycle I would be done. However I’m getting palliative chemo. There aren’t any further orders for more. I’m a bit concerned as I don’t want something that was working to suddenly stop. My chemo nurse yesterday said she would send my dr. a message but I’m just a bit nervous and wondered if she forgot. I’m still waiting for Pet scan to call me with an appt. They usually call right back and so idk what’s going on. I’ve seen something on one of the cancer threads about scanxiety(?) and I definitely have that.
Having all the usual SE of the chemo. Tomorrow starts the granyx shots. My next appt. with oncologist not until Feb. I have so many questions I’d like to answer now!!!
Love to you all. To all the new lovely people who are unfortunately here, welcome and I will try to help if there are questions that the others can’t answer (but btw they are brilliant)(plus I’m in the US so don’t know how the NHS works etc)(but they sound amazing) big hugs and once again love to you all and sorry for the rambling. I’m thinking I might know what brain fog is like.

@cantbelieveIamhere I can’t believe I am here either. I have a favorite place to sit and NO ONE sits here but me 😝. It has a fluffy blanket too but my cat 🐈 tries to make it his own. I also have a diary but have to admit I’m lousy at writing in it. I wish I had started at day 1 but am going to try and catch up 🤷🏻‍♀️😵‍💫.

I do find your system difficult to understand @SbmppIs palliative chemo the same as your “normal” chemo? I hope the pet scan comes through soon, definitely follow up your nurse and chase. I hope the Granyx shots go well today. I think you should reach out to anyone and everyone you can 🤗

I am loving the favourite snuggly places (with and without cats and books!)

The meeting with the surgeon will go well I’m sure @Nonamelass. Do you have a list of questions?

Ah, the spring cleaning. I think I have exhausted myself. I woke up with really horrible pain in my knees about 2am. The Zoledronic acid? I didn’t take any steroids yesterday. I will take one today. A little over ambitious perhaps. I have brought out the hot water bottles and will spend the day resting and reading.

I hope you are all doing better than poor old lady me!

Hi @livingwithim not sure if there is a stage 4 thread. I am stage 4 (primary bc with secondary lymphangitis and bone metastasis) so I am happy to keep you company 😊 How long have you been living with stage 4 melanoma?

Definitely insist @cantbelieveIamhere. Frankly, if you can’t insist in our situation when can we? I think your cosy chair sounds perfect. Certainly get your son out of it - it’s yours!

Sorry @cantbelieveIamhere- the letrolozole is okay I think. How is yours?

its hard to know as I’m also having the ribocyclib. Although I’m now on the week off from that so it’s just letrozole at the moment. I do have a clinic appointment this morning. Fortunately it’s a phone appointment so I won’t have to hobble in!

Thanks @ventressand sorry to hear you are also on stage 4. I am amazed that in fact my stage 4 diagnosis was over 6 years ago now (November 2019), with my primary cancer diagnosis in 2015. I have mets in spine, liver and lung. My life has been saved and currently still being held stable by immunotherapy (Nivolumab), which is a fairly new treatment and fortunately for me the side effects are manageable. I'm 62 now, was 56 at stage 4 diagnosis. Grateful to be here and also, it's a hard place to live in isn't it? PS as only just restarted with mumsnet I can't remember how to reply to posts properly so sorry for any errors.

Everyone is really confused about my appointments. I’m going to go in a Friday (I have a blood test and ECG I think) and straighten it out. I think the confusion is in part created by me (oops) and also because they want to tie the ribociclic cycles to the Zoledronic acid cycles (4 weekly).

And I you @livingwith. Six years is fantastic! I love that secondary cancer patients are living with cancer almost as a chronic disease. I was speaking to a chap in chemo a few weeks back who comes in for his lymphoma treatment every month and has done for well over ten years. It’s just something in his diary now. I think that’s amazing 😊

I was first diagnosed in September so it’s all still very recent for me and I was knocked out by it. To be fair they had told me in A&E, left me with google, and disappeared which wasn’t ideal. I have taken, as I’m sure you had too, a long time to come to terms with what I was facing. I was in denial for a long time but I am coming around now. Others might think that I’m morbid (and I probably am) but I am dealing with my mortality by trying to take control of the parts I can control, like my life and financial planning.

Do you have family @livingwith? I have a husband and 18year old son who takes his A levels this summer. It’s been hard on him but he has good family support. He had a bit of a wobbly at school in the autumn and has seen the school counsellor a few times.

I’ve asked on this thread (wonderfully supportive- thank you all!) if I should asked for an expectancy but the consensus is no, don’t do that.

Your immunotherapy sounds fantastic. Just so many new therapies which are so effective. Hopefully will it keep those mets back pretty much forever. It is a hard place to live and it sometimes takes my breath away like a punch in the stomach. Reading is definitely my friend 😊

@ventress - is the pain in knees side effect of letrozole? I am not on it yet but its in their plan for me, it might not be in mine as I am concerned about side effects long term. So are they trying to tie in both infusions so you dont have to keep going in and out of hospital appointments?
I totally feel the take your breath away thing as I dare not ask questions about the secondary cancer in liver and lungs I only know that after chemo phesgo will go on and on.

So sorry to see @livingwith here but good that your immunotherapy is working I havent heard of that, how often do you have that?

Have done my back in changing beds and laying with arms up on scan table has made it worse so am using heat lamp and hot water bottles to ease pain. Nice to have something to spoil my few days of feeling normalish before chemo next week.