Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

I have at least (hopefully) resolved the issue of bloods going off to a different hospital and chemo being delayed for some hours. I spoke to the nurse who does the bloods at my GP surgery and she said if she'd known before, she would have put them in the 'priority' envelope! Equally, the chemo nurses who print out my blood form should apparently have put a sticker on the form to say that I am a priority....

Such little things but they do make a big difference!

I would make an ace administrator after this experience , I could write a book. Thoughts to all those battling the systems.

I have my last chemo for a while on Thursday. At my hospital apt on Monday Consultant said that I should be able to have a six month break if results plateaux, I am exhausted this time round and he did say that normally they don't go past the six months because it only carries on working for a minority of patients. So super good that it was still working for me, and a massive part of me wants it to carry on working but the other part of me just needs a break. Especially over half term and Christmas...
Farside hope you're feeling a bit better after that chat, ongoing and chronic condition is a much nicer term for sure.
TwitterQueen, sorry to hear that people have stopped ringing and emailing, I am so thankful for the support and tea and brunch and lunch dates I've had from friends. Have you spoken to people to explain or are they just maybe in a bit of denial ?!

Hello Lacies. It's been a while and I haven't really caught up with everything yet. I have read about chewing though and am wishing her all the love, care and support there is from those around her. Chewing, you are in my thoughts.
Mrs, I'm so sorry you are having a hard time with the new treatment. I've tolerated it rather well, but I do have stiff ankles which started wuth tamoxifen. I hope they manage to put your mind and body at rest following the bleeding.
Leslie, you're as usual full of support and good will holding everyone's hand whilst having your own ups and downs. You really do go the extra mile. Bless your heart.

Waving to everyone else here, old and new..newbies, you've come to the right place.

Hi all.

Nothing much to add but just checking in to say hi and send flowers etc to everyone.

Had my mask made and measurements done last week so now awaiting the start of radiotherapy. Should be fun...ish.

Hi. I'm just popping by to say hello, I've had so many tests and scans recently for suspected lung cancer, all your chat about PET scans etc and good advice up thread has been so helpful. Still not quite there on diagnosis because there's a chance it's a non cancerous growth, maybe only an op will confirm. If it turns out to be cancer I will be back for more of your excellent wisdom and chats. Thank you and good luck plus and to everyone

Chewing, I used to post as Nervous1971. We went to the initial breast clinic appointment on the same day. Our paths have taken such different routes since but I have always thought of you and followed your posts on here. You will live on in the hearts and minds of those whose path crossed with yours. Xxx

Have come over to say hello and ask an odd question.
Following a surgically induced menopause and subsequent hormones going bananas - could my sudden revultion of the previously scrummy marmite flatbreads and new sudden cravings for peanuts 24/7 be something to do with the op in a similar way to pregnancy induced cravings? TQ seem to remember on your thread you had a craving for cashews or was it something else?

Today is one week post clear up op, ovaries and tubes came out in July, histology came back dodgy so have just had uterus and cervix out with an omentectomy (never knew there was such a thing as an omentum before all this) for final staging to be done. Restults due back in another week to fortnight.

Stopping the ibuprofen today and seeing if I can get by on paracetemol alone. Will be glad when my guts start working properly again and I get more than a couple of hours sleep in one stretch.

Eat my cravings were pre op. I put them down to bland hospital food and i' m post menopause. Good luck for your results. Will keep everything crossed for you.

Sending love to chewing

Twitter I’m glad it’s hopefully sorted

fluffy I can understand your mixed feelings about a break, but hopefully they wouldn’t suggest if they didn’t think it was a good idea. Chemo-free Christmas sounds good :)

royal how are you? And thank you, I do my best. This thread means a lot to me and I’m determined to keep it going! :)

LittleGreyCat how’s the mask? Good luck with radiotherapy

ILoveDolly (Parton?) I’m glad we could help. Fingers crossed for your results. When is your op? You’re welcome to hang out here while you wait for your diagnosis if you’d like, especially as you’ve brought

eatyourveg good luck with your results. I hope you are recovering well I get weird cravings with chemo. No idea what causes them exactly!

I hope everyone is having a good day. I’m postponing my chemo for a week as I still have a cold. Nothing serious but I’d rather recover properly than risk a chest infection.

Hi łeslie. I'm having a rubbish day. The mysterious post menopausal bleeding which I've had for over two weeks has gone into overdrive today. I've barely left the sofa and have a too hot wheat bag clamped to my tummy, I thought I'd left all this behind. Gp called last night to say he's going to refer me urgently for hysteroscopy, I should be grateful but I was a little concerned that he thought there was another option. I'm supposed to be going for a free session of complimentary therapy at the hospital tomorrow. I was hoping for some reflexology but at this rate I won't be able to leave the house. The breast nurse arranged it because of the pain from the anastrazole, it would be the first time I've qualified. Sorry for the self pity, I know it's minor compared to the problems of others. I just want to know what's wrong with me, gp muttered something about uterine cancer which I know is what they're looking for.

Oh you poor thing I hope it eases up before tomorrow as you definitely deserve a bit of pampering. Can you reschedule if not?

I hope they get the hysteroscopy organised quickly so you can get some answers.

If you can send DH to the pharmacy later, see if he can get hold of some red Tiger Balm. I find it really helpful when I have adhesion pain, which feels very similar to period pain.

Mrs, I'm so sorry you're going through all this. I hope you are reassured as soon as possible

Thanks for asking Leslie I was ok but then a breast MRI I had two days ago raised concerns about a mass in my affected breast and I'm having a core biopsy in ten days time. I'm quite a nervous wreck and just trying to keep busy. Just when things seemed to be resuming some normality ..oh well this is how it is and I've got to deal with it.
Hope your cold clears up soon.
Best wishes to all.

Ah fuck royal I’m sorry to hear that. Can they not do the biopsy any sooner?! I’m sorry you’ve got this to worry about. I’ll keep my fingers very firmly crossed for you

Thanks leslie. It could just be another false alarm, but them maybe this time it's setoous. I keep thinking maybe they should've offered me a mastectomy when I was diagnosed instead of breast conservation surgery. I'm actually not loving having breasts anymore.
They're trying to book me in for something closer. In the meantime, I must wait and worry!

Hi everyone - and to those of you waiting for further test results and treatment - mrshod, royalmama, littlegreycat, fluffy.

Leslie a big thank you to you for always remembering me.

There's still some uncertainty about my primary cancer but they are assuming for now that it started in the vagina, which is where the great big f***g tumour is lurking and spreading. I had mammograms and ultrasounds today on spots that showed up in my breast on the PET scan - the consultant said it didn't look like a breast cancer, but they have biopsied it. Weirdly, a diagnosis of breast cancer might be a good thing as then they will know the primary cancer and can use more precise breast chemo; if not breast cancer, it means the bits that glowed on the PET scan were not all cancer, which gives me hope that the glowing bits in my lungs might not be cancer either, but maybe I am just being over-positive here.

Either way, the gynae oncologist seems to think my cancer is not curable but is hoping to hold it at bay with chemo initially. Unless they are able to identify the primary cancer, treatment will be paclitaxel and carboplatin (Taxol/Carbo) which is normally used to treat ovarian, womb and lung cancer. I'll have one session every three weeks, then after three sessions (nine weeks) they'll scan to see if there's been any effect, then proceed accordingly.

Meanwhile, they've changed my pain meds to morphine and steroids which has made a huge difference to the pain AND my state of mind (AND my DH's state of mind, as he was very upset seeing me suffer). Still having bladder issues - frequent weeing, plus difficulties emptying my bladder in the mornings. The hope is that the chemo will shrink the vag tumour and stop it pressing on my bladder. I have a palliative care nurse visiting me tomorrow morning and am hopeful she can advise on how I can cope with this issue while I wait for treatment.

Have been referred for psychology support, various free holistic treatments, relaxation sessions, groups - nothing has started yet, but I'm looking forward to getting some TLC for me and DH.

Friends are really stepping up, apart from the person who sent flowers - not only did I have to deal with unpacking them and finding a vase etc, but it also felt like my funeral. I know the person means well, but ... (Virtual flowers are, of course, always very welcome!).

So, lots going on to keep me distracted, moments of despair in between, some black humour, etc.

I guess you are all familiar with that!

Hello Far
It's encouraging to hear that plans are in place! Once you can get stuck into treatment things become more manageable.

I am on Taxol and Carbo for my ovarian cancer. I started in April and had 3 months treatment to reduce my tumour, which was 23x20x14 cm. So pretty big! I then had a CT scan and laparoscopy which showed that the mass had reduced enough (it has to be 25%+) for me to have an op.

So hopefully you will be encouraged by the fact that IME, the chemo did reduce the mass significantly. Taxol makes your hair fall out. This doesn't worry me at all but I know it can be very traumatic for some.

I know you've been told you can't have an op - as presumably the tumours are in too many different places, but if they do decide on breast cancer would they then operate on your breast?

I know what you mean about flowers... I had 2 people send me "Get well soon" cards.. I threw them both in the bin immediately. It's cancer FFS, you don't get well soon. Here's some and instead.

So glad you're getting support. Take everything you can get! I had a pampering session which was amazing! Loads of fab freebies too.

Virtual hugs and flowers to everyone, seems like a few people are having a bit of a rubbish tme at the moment : Hopefully everyone will get lots of lovely, positive rsults and pain meds where necessary and some TLC.
I get lots of flowers now when people come to visit, although also cake and biscuits which is also nice :) So maybe when you've had some time to get used to the "new Normal" Farside you may feel happier about receiving them?! Some TLC sounds lovely, I'm going to go for a proper massage once I've had a bit of a chemo break, fingers crossed. ALthough I've found a couple of places locally that are actually trained to do "cancer massage. If you do lose your hair I have a massive bundle of headscarves that I purchased and was given but have been fortunate enough not to need. I've lost a fair bit of hair but lucky to still have some left, rocking the short hair, round steroid face and gene therapy drug related acne... :) SO if you do need any headscarves at any point pm your address and I'll send some on.
Hope your cold clears up soon Leslie, I know we were pretty much on the same schedule of chemo days before.
Good luck to everyone having scans and waiting for results x

I'll have a look at red tiger balm leslie, I've never heard of it. Sadly dh has been in Galway all week, back tomorrow, so no chance of any today.

royal I'm really sorry you have uncertainty again. What prompted the mri scan? That is a long time to wait for the biopsy, I hope you get it done more quickly.

thefarside I'm pleased you are feeling more comfortable and the pain is being controlled. Sounds like you are going to get the works thrown at you, it's such a lot to get your head around.

Hello to everyone else currently contributing and lurking. It's so reassuring to be able to dip back in again. It seems that just as things are going smoothly a new problem arrives and you need the support of others who understand.

Wow Twitter - in the "my tumour's bigger than yours" battle, you are definitely the winner! However my small 6x3cm tumour is clearly superior because it is of unknown origin and therefore more difficult to treat . I am encouraged that the Taxol/Carbo shrank yours successfully, and hoping it will do the same to mine so I can go for more than two hours without a visit to the loo. Small goals.

I'm resigned to losing my hair and considering a wig for going out in and scarves for around the house. I don't have the kind of bone structure that suits very short hair, but I guess that pales into insignificance if I can stay alive a bit longer. Thanks for the scarf offer Fluffy - I do happen to have lots of scarves already as I like them as neck accessories. Just need to practise tying them artfully round my head.

Life is just so intense at the moment, although I would swap it all tomorrow for my slightly dull cancer free existence. But I do have a feeling that the rest of my life, however short it may be, is going to be full of love and connection with others, and that when I'm gone my DH and DF will be smothered in all the love and support that is flowing in our direction, and that I am trying to capture for them. I also know there will be some tough shitty times - like when my bladder finally decides to give up the ghost, or other parts of my body start to falter - and I will want to die. And many more sobbing sessions with DH when we are both feeling inconsolable.

I keep reminding myself that we all have to face death, and tonight leave you with this lovely post from the Macmillan site, from a youngish man responding to a woman filled with despair about her cancer:

"Really feeling for you at the moment. What you describe sounds like nihilism and it's not a nice place to be. It took me a long time, and a lot of sessions with a psychologist before I came to the conclusion that a cancer diagnosis really doesn't change anything. I was always going to die, all I have now is an idea of how it might happen. But the key word in that last sentence is might. The real truth is nobody knows the future, it is always unwritten, and all our job to do is put one foot in front of the other and see where it goes."

Sleep well everyone.

TheFarside so true about love and connection, let us all be full of positive thoughts that we will keep going for as long as we possibly can and spend as much time as possible with loved ones. The thought of leaving my children motherless is the worst for me, although I know they will have so much love and support I just can;t bear the fact that I won't be there for them. I wish cancer would fuck off to the far side of fuck but knowing it won't just keep on going one day, or one set of chemo, or one scan etc etc to another. My last chemo session for at least a month tomorrow and I got some holiday brochures as thinking positive thoughts that we may be able to actually go away, if I get us all passports and can find travel insurance that doesn't triple the cost...

Good early morning lacies!
Thanks for the thoughts and kind words.
Mrs, when I went for my mammogram, thet detected something which at the time they said didn't look sinister, but recommended a breast MRI anyways.
How is the bleeding and pain now?
You're so right about here, as I can't help but seek refuge with you all when things are depressing.
Have as good day as possible lacies.

That was very early royal!

fluffy enjoy holiday planning and fingers crossed for insurance etc

TheFarSide Look Good Feel Better do scarf tying workshops. Their make up sessions are also really good for learning how to draw on eyebrows if they fall out and that sort of thing. You get lots of freebies! I’d recommend it to anyone going through treatment as it’s a really fun few hours with a bunch of other women who are in the same boat :)

mrsrhod sorry DH has been away too. I hope you’re feeling a bi better today and manage to get to your reflexology

TheFarSide good that your pain is being better managed, and I hope the nurse is helpful today

Waving to everyone and hoping you have a good day

Morning royal, has your sleeping not settled down yet or is this new sleeplessness with the new worry?

fluffy the thought of leaving our children is the most horrific thing, for those of us who have them. Even though mine are 20&23 they still rely on me so much. Dh and I have been together for 37 years, I can't begin to think about any of that. thefarside, what a lovely post, you sound as if you have so much love around you, long may it continue.

I'm still feeling rather grim but I'm going to dose myself up on all the meds I have and go to the therapy session. It's a beautiful day and some fresh air will be welcome too. Dh will be home tonight thank goodness for about ten days then he's off again. I'm hoping to have some answers before then but it's unlikely.