Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

You know what - we’re all bloody amazing on this thread! No matter how hard it gets we have a cry or a weed bashing session, maybe thump a few cushions and then we pull on our big girl pants and start again. Ladies - you rock!!!

We rock, wearing big girl pants, bashing weeds, whilst eating cake and drinking whatever we feel like! 💪💪💪

@Whatevershallidowithmylife
Yes, we are indeed - thank you!
We may all have cancer but day to day life does not stop so you just have to get on with it all really. Although the down side of that is that people think that you doing ok and that this cancer business is a breeze!

@Enigma52
If the breathing exercises aren't working while in the anxiety 'moment' then the best way is to build up 'muscle'. The way the psychologist taught me and youngest DC was to develop memory muscle for the process and the best way to do that is to practice while happy and calm. When DC was calm and relaxed we would shut our eyes and imagine a white wall then we placed a blue (or any colour you find relaxing) square on the wall Then we would do the 1-4 breathing count along each edge going clockwise, slowly and using your diaphragm if you can.
So,
Top line: Breath in 1 2 3 4
Right side going down: Hold breath 1 2 3 4
Bottom line: Breath out 1 2 3 4
Left side going up: Hold breath 1 2 3 4

And repeat. If counting to 4 is too much then do 1-3.
Start off with maybe 10 and build up so that you can do it for about 10 minutes. Practice at odd moments when you're not doing anything like in a queue at the shop, stirring dinner, watching tv but also do it while sat quietly. Once the 'muscle' is developed you should be able to switch the method on when you need it.
The increasing/deceasing circles on the palm of your hand can be done any time but do it while you feel relaxed so that you're training your brain to associate it with comfort. I mostly use this one and sometimes I use it a lot particularly if I'm at work. I hope this helps Enigma?

Thanks to everyone on their condolences for Ethan Nut the squirrel. We do still have a hedgehog but it only comes at night to eat special hoggie food and some monkey nuts - well someone has to eat them now that Ethan's not here and I have a massive bag. We have called him Godzukie as his method to extract the nuts from their shells is to stamp on them like a mini Godzilla which leaves a huge mess behind that resembles post battle NYC from Matthew Broderick's Godzilla film! For anyone who's over 50 they may remember a cartoon about Godzilla? Godzilla had a smaller sidekick called Godzukie which is who the hedgehog reminds us of.

Youngest DC starts their first practical A- level exam tomorrow so got me up up at 2am this morning with a panic attack so bad that they were on the verge of vomiting. Two hours later I finally got them back to sleep but I'm hoping that there's no repeat tonight or subsequent nights as exam takes place over three consecutive days this week and they really need their sleep. Best of luck to any of us who have young people doing GCSE's & A-levels etc - I hope that your kids do well.

@thesandwich

and with her+ breast cancer my onc is very reluctant about me using any estrogen based topical stuff….

I told my oncologist that he would have to prise vagifem out of my cold dead hands. Seriously though, some of my MDT have said it is ok to take it, my oncologist wanted me to reduce the dosage to a few times a month rather than twice weekly, but I still use at recommended dosage. Life is too short, and it's a risk I'll happily take to avoid VA. Cancer has robbed me of so much, it's not going to deny me a happy vagina/enjoyable sex life.

@Enigma52

Chemo, I refused initially, but they pulled on the emotional heartstrings " did I want to see my kids grow up?" So chemo it was.

I am stunned they used in order to make you consent to chemo. That's emotional blackmail, if not outright manipulation. I was really anti chemo, radio too, and hoping to avoid the latter is why I opted for a mastectomy. However, having beaten my mother to a cancer diagnosis, I want to out live her. She died a few months after turning 50, so for me, I'd rather throw everything at this cancer now, even chemo, rather than find myself in this position again in a few years time and curse myself for declining chemo.

Am sorry to read the horrors you suffered initially with your reconstruction/expanders. This was one of the many reasons I decided against that path. Also, I never particularly enjoyed having large breasts, so for me, not having any will be a chance to do the whole flat-chested Parisienne thing. I don't think I need counselling, although one of my closest confidantes is my ex-counsellor who went through breast cancer herself, and we do talk about this. I think for me, it's more a regret that even though I hated being busty, I had a fabulous chest that I've spent most of my life covering up. I just wish I'd have worn more skimpy and low cut tops. Breast/cleavage aren't exactly elegant. I did, however, have a cast made of my breasts. A great choice given I'll be losing my second breast some time soon. I think part of the struggle with losing my breast is the waiting. There is so much waiting involved with cancer, and for a time, I had chemo as a buffer. Now that's over, the second mastectomy will looming, although unscheduled. I hate not having definite plans or dates. But, once it's in the diary, and once I wake up soaked in morphine, I should be fine. I have already sold off/given away my sizeable lingerie collection and bought a few new teeny tin beautiful bras - am still in my revolting post-surgery bras, and this is partly why I'm so angry about it all - I hate ugly underwear. Once I'm flat, am sure it will be much easier to cope with.

@doublec
I've had my fair share of emotional blackmail from doctors and nurses including being told you're a survivor not a loser when I was wavering about starting chemo for cancer 1 because they couldn't get the cannula in at the 10th attempt and I was almost screaming in pain. Jeez I wonder why I've got PTSD about it?

This time with cancer 2 and because I'm not playing ball and doing exactly what they tell me to do, I've had a couple of real nasty ones.
When I asked the breast doctor why my HER2+ BC had come back she said it was because I'd been 'difficult' about radiotherapy ( I refused it for very good reasons for BC1) and she refused to accept that oncology had under treated me and stopped my Herceptin too early.
The BC consultant snapped at me "well I suppose a dead mother is preferable to asking your child to sacrifice their exams" and "Your child would want you to be alive rather than have exam passes wouldn't they?" because I am delaying treatment for what I believe are very good reasons and have clearly explained my reasoning to them. She said a few other things that sort of hinted that I was fucking their stats up by not being compliant.

After reading lots of different experiences people have had with their initial cancer treatment, many people seem to develop secondary cancer.
This has only just dawned on me and I just wonder if I am correct in thinking this?

@Zoopet when you are sitting with the oncologist and they are going over the prognosis they talk about 5 year and ten year survival rates. This is not the same as being recurrence free. For example while more than 95 percent of breast cancer patients are still alive after five years the rate of local recurrence or a new primary is up to 40 percent in some cases. These are treatable and not the same as secondary cancer (which is spread further through the body). It took me a long time to understand this subtle difference. Obviously every cancer is different and every patient is different, but your team can tell you the stats if you want to know them. It's a minefield and mostly I just ignore the numbers and get on with life. Worrying doesn't alter anything!

@TopOfTheCliff does this mean that once you've had cancer, your likelihood of being diagnosed with a new (as opposed to metastatic) cancer is hugely increased?

You have made me do my homework @HellonHeels
It is not very clear what the odds are.
Breast cancer Now says if you have already had one breast cancer you are "slightly more at risk" of a second one. The risk of BC varies with age but in a lifetime is about one in eight people or 12 percent.
Livestrong puts the lifetime odds of a new primary among cancer survivors at only one to three percent, which would be lower than the population average.
Having some chemotherapy drugs can increase the risk and so can radiotherapy.

If you had a genetic link to cancer then it would be higher, and if you had risk factors like being a smoker, a heavy drinker, overweight or have a high blood sugar then your risk is higher apparently.
I would say that the risk is "slightly higher" but not "hugely increased". All we can do is try to minimise the risk factors. Eat less, drink less and exercise more! I did all that and still got another primary despite having clean genes.

I hope that helps, there is a lot of conflicting data out there. And there is no way of predicting the future either.

@doublec I am totally with you on preserving vag health (sorry for crudness!) but VA is no laughing matter at all! I also told my team, that if they didn't write a letter to my GP pronto, to get my vagifem and ovestin put back on repeat, then I would be sourcing my treasure else where! You can buy Gina pessaries( same as vagifem) in Boots and ovestin (if you bend the truth a bit) from Superdrug online. Both contain very low levels of O and so important for keeping the vagina and all it;s membranes healthy. Failing that, the YES products aren't too bad. @thesandwich if you are struggling, see if you can speak to a more clued up/sympathetic medic?

@doublec Oh yes, the oncologist had a right dig at me re: the chemo. She asked how old the children were and played on that. On asking if I would lose all my hair, her prompt reply was " I think that is the least of your worries right now, don't you?" If anyone said that to me now, I would not think twice about answering back. I was 38 and still hadn't learned the art of assertiveness (clearly!)
Yes the horrors were indeed horrific and I suffered mentally for a long time afterwards. Again, in that situation now, I would opt to stay flat. The waiting game in cancerworld is definitely the worst. Like you say, once the procedure is done and you adjust to your new body, you can begin to move on and buy new underwear to suit you.

@MothralovesGojira How has your day been?
Those breathing exercises will come in very useful, so thankyou. I must take a photo and have them at the ready, since these panic attacks, come out of no where. I am planning on returning to work after the May half term, so I am sure they will come in useful then, as just thinking about it, overwhelms me.

I just had to google Godzilla from 1978! I remember watching as a kid and being pretty terffied at the theme tune and opening scene! Godzukie was so cute though! How lovely that you have a little hedgehog named after baby Godzilla 🤗

Very best of luck to your DC with their practical exam tomorrow.. will be rooting for them! Also hope tonight is peaceful for you, with no panic attacks. DS is frantically revising, whilst on the phone to DD who is at Uni to help him with Romeo and Juliet.

You know what, these medics can be so damm rude at times. Some of them don't appreciate that we are grown adults, with brains, thoughts and feelings. And, as much as cancer derails life hugely, life also needs to go on and more often than not, there are other people to consider. Gets my back right up!
Take no nonsence @MothralovesGojira You made your decisons for good reason.

@catmomof3 Good luck for tomorrow.

@TopOfTheCliff thank you so much for taking the time to research and write that message for me. I really do appreciate it, and the information you've set out.

I'm trying not to get too hung up on outcomes, but I like stats and data, despite the limitations.

In other news, I'm currently sporting a freakish armpit following my node surgery. Pretty sure there's a seroma in with the impressive post-surgery swelling. Going to see the nurse team on Thursday to get it prodded.

Best of luck today @catmomof3

I hope your armpit settles down soon @HellonHeels . I like to know the data too although I'm finding it difficult not to get too focused on it. As @TopOfTheCliff says worrying won't change things, though I wish my brain would accept this at times.

@catmomof3

Good luck for today - we are all here behind you sending hugs xxx

@catmomof3 good luck for today x

@catmomof3 thinking of you for your appointment today Xxx

@catmomof3 hope all goes smoothly today.

In addition to ‘don’t borrow tomorrow’s worries’ there is a phrase (mantra!) ‘thoughts are not facts’. Thought I’d share in case anyone else finds it useful. I can sometimes calm down the ‘glitter snowstorm’ in my mind with these phrases.

Hi everyone, thank you all for thinking of me today 🥹🥰 it went really well. My consultant is so lovely and I'm really happy I will be under her care. They have me as stage 3c1 as both sides of my lymph nodes are affected, the tumour itself is only 4cm. I'll be having 6 weeks adjuvant chemo (paclitaxel and carboplatin) which she said is the newer treatment as it's used to target any other cancer cells hiding in the body as the standard treatment focuses on the tumour area. So after that I'll have radiation, chemo (cisplatin) and 3 rounds of brach therapy. She mentioned I'll have radiation also on the stomach lymph node area as a precaution. It's gonna be a long 15 weeks that's for sure. I have my GFR tomorrow and then after that I should get a call for my treatment start date. She's also getting my letter for British Airways sorted 👍🏻

The only thing that annoyed me today was when I was sent for bloods and an ecg the two nurses dealing with me clearly has issues with each other and were shouting at each other and generally being rude. That made me feel super uncomfortable and stressed. When my CNS called me later she was mortified that had happened.

I'm also getting referred for counselling as I also spoke to my gp last night, he prescribed me something to help calm me down before appointments.

So I'm pretty much ready to get started and some cute hats I got from shein arrived today ready for when I lose my hair

Still catching up on everyone's messages, but wanted to quickly type this: I just saw my neurosurgeon to review the MRI. It was really good news. The main bit of the tumour (between the carotid artery and brain stem) is gone and I'm healing well. There's a suspicious area a bit further down near the top of my spine, but it's tiny and in an area that isn't problematic. No "critical structures" nearby, and even if it grows by 1-2 mm a year, it won't turn into a problem for a decade or so. Conventional skull base chondrosarcoma doesn't really metastasize - so it can just stay there under "watch and wait". Next MRI in 6 months.

Phew.

@catmomof3
That is excellent news and you now have a firm plan in place. I'm glad that you're pleased and reassured and you can now make some plans going forwards. All I would say is be prepared for it to take longer than 15 weeks because you may need to take small breaks between treatments.
I expect someone who's been through your type of treatment will be along at some point who can advise about how they dealt with it - I've no experience as I'm currently breast cancer only.
That was very unprofessional of the nurses to be bickering. I've seen it myself on occasion but generally ignore it as it's work related stress - I'd only say something if it was aimed at me.
I think that you had put a PIP claim in? Make sure that you update them with your diagnosis and treatment plan as that may well speed things up - cancer cases do seem to be going through quite quick.

@KentishMama
Excellent news and something to celebrate! So pleased for you.

@KentishMama Delighted to hear your good news xx

I'm off to see an actual GP at my actual surgery tomorrow morning. The pain in my stomach that's under my ribs has been getting worse and is now waking me up so I did an econsult last week and they messaged me on Monday to ask me to contact them urgently. I couldn't get through until this morning and the receptionist said that they wanted to see me immediately this afternoon but I already had plans and we settled on early tomorrow morning as a compromise. So I wonder what the urgency is now considering that every doctor has ignored my complaints about the rib/stomach pain for two years now? It really bloody hurts now though.

@MothralovesGojira My oncologist said she isn't expecting any break between treatment as it's better to do it all at once. Be nice to have a week off though lol.

I did apply for pip and had my assessment last Monday where I made them aware I had been diagnosed with cancer. My CNS said if they refuse me she will get it sorted and help me apply again. So that's a relief.

@catmomof3
Gosh, that sounds really gruelling then but I guess the quicker it goes then the quicker it ends. All sounds good though.
It's a bit of a bummer if you have to apply for PIP again. I know that MacMillan also have a service to complete PIP forms and their success rate is quite high.

@catmomof3 so glad you have a plan lovely. If I can help in anyway give me a shout x