New year, new thread - cancer support thread 68 - join us if you have cancer, or are waiting for cancer-related tests

[WhatWouldLeslieKnopeDo]

Hello everyone,

Welcome to the new thread. Our previous one is here.

Anyone with any cancer is welcome, or anyone waiting for tests because they might have cancer. If you're new, just jump in wherever. Don't feel you need to catch up with previous posts. We talk a lot! Ask any questions you need to. Someone will hopefully have an answer. And feel free to post photos of cute pets too.

Whether you're new or not, it's helpful to post a little introduction on the new thread to save people trying to remember everyone's different diagnosis and treatment.

Noodles I am with you on the topic of milk (barf, vom, effing disgusting) and also toenails - I can bore for England on those.

Milk - I too had those mini bottles left in the playground. Oh dear god. As a milk intolerant baby then child I cannot tell you how much I hated them. I cannot drink milk to this day though I can have cereal occasionally.

Toenails - I searched long and hard for some cheap ugg-like boots because I couldn't bear pressure on the top of the nails for months. I now have a mini nail growing downwards on top of the grey manky thick disgusting right-hand one, and a horrible left one. The good news is that they do - eventually - recover.

Leslie and Purple thinking of you both. I've wondered about letters but haven't written any. Likewise with recording my voice. I'm not sure whether that''s a good thing or not. I wonder if it would just encourage wallowing...

Started cycle 2 today. Not sure about hands and feet - despite reduced dose they're looking iffy. It's a wait and see job. I was very miffed that a reclining chair patient had stolen by bed table when I got to the hospital! Humph.

Hi lacies, please can I ask a bit of advice from those with DC? I thought mine were doing ok, but 15 yo DD just had a huge meltdown - she’s panicking that the stress is affecting her studies, that she’s going to get a rubbish report etc. I don’t think I’ve been supporting her enough (and she has inherited my talent for anxiety). I think I need to call the schools tomorrow to discuss what’s going on - but any pointers?

Waving at everyone, and hoping we all have a peaceful night xx

Leslie. Glad you feel more relaxed now you have made the decision. As someone else says I don’t think we really use the word brave do we but I do want to say how much I admire you and what a great support you have been to me and lots of others

Purple. It must have been so hard writing the letters. I hope they can sort out better pain relief for the sciatica.

Noodles. I’ve suddenly developed issues with my nails on my hands. They feel very sore and painful to touch and kind of feel brittle and dry. I suppose it’s the effects of chemo finally showing itself. I have red patches under the nails.

Flying archer. I will google knitted knockers and see what comes up!

Leslie it's gabapentin, amitryptaline and paracetamol for my leg. I also have the 25mg fentanyl patch and liquid oxycodone but nothing seems to shift it and it's worse on a night, something to do with your spine stretching out during the day

TQ hopefully your hands are still a bit iffy from your first dose and that they calm down soon

Toofar does she have someone at school she can talk to? As awful as it sounds anyone other than you, my son talks to my brother a lot but pretends to me that he's fine as I think he doesn't want me worrying about him. I feel for you though, it's so tough knowing what to do or say for the best

Toofar is there a pastoral counsellor of some sort at school? There should be one I believe and it would be helpful for you to make contact with her / him and tell them what's going on. Your DD needs to know that there is someone at school she can go to if she wants to talk or just cry.

The head / HOY needs to know too so they can keep a track of performance. I supplied evidence of my illness (consultant reports etc) to the school so they could inform the exam boards (my DD was doing A levels).

Does she have a good friend she can to? that might help too.

FWIW my DD got her grades and got her 1st choice uni.

TQ - thanks, they do have a counsellor, and I’m going to try to speak to her head of year today

I’m a bit glum today- the surgeon has just told me he’ll probably remove my clitoris as part of the operation to remove the melanoma. I know it’s important to remove all the cancer, plus a margin, but this does seem a bit harsh!

Lacies, thank you for all of your lovely comments. I’ve been busy the past couple of days, catching up with all of the things I let slide when I was in my paralysed by fear state. Definitely a lesson in not always expecting the worst and not trying to interpret the facial expressions of radiographers. I now like to think that her grimace was due to trying to hold in a fart.

Ranout, not crass at all to hope I was celebrating. Sadly I wasn’t in any kind of normal fashion, only internally! How’s your recovery going? Hope Pandora, KeepCalm and MrsT are all recovering well too.

Purple, I hope your pain improves soon. It is so good and brave to write those letters. It’s heartbreaking, but I’m sure it will mean so much to your DS. My DP dealt with his diagnosis by absolutely refusing to accept what was happening (despite his bravura performance to everyone saying he was fine with it) and our DS was totally unprepared for his death. It is a big regret that DP didn’t leave anything like a letter for him and my DSDs, it would have meant the world to them.

I heard about someone recording a Desert Island Discs sort of thing with people who were near the end of life, not just cancer, some were just old. It seemed to be a good way of triggering memories and stories. Being able to hear someone’s voice again is very special. I have a whole load of CDs that DP recorded for work purposes and a really great video of him talking about a production he was working on. (He also sometimes crops in the odd TV programme or film.) I also have one ancient tape from when I was a child, singing and carrying on with my dad and favourite aunt, who both died within a week of each other 14 years ago. I cry every time I listen to it, but it’s one of my most precious possessions.

Toofar, good luck with talking to school, I think you’re doing the right thing. I’ve been very lucky with school supporting DS through bereavement and me being ill. I have to say FFS about your op and removal of your clitoris. Fucking cancer, if it doesn’t punish us enough. Is it worth seeking a second opinion?

TQ, as Purple says, hopefully your hands and feet are still iffy because of the first dose and they’ll settle down. With you on the warm bottles of school milk. Yak!

Noodles, are there any podiatry services you can access? Our local cancer support centre provides podiatry and complementary therapies. The podiatrist is wonderful as she looks after so many cancer patients, she knows exactly what she’s doing. I hope your tootsies aren’t too sore today.

A massive hug to Leslie and everyone else that I haven’t namechecked. It’s Burns Night, so I’m off to catch a haggis…

I now like to think that her grimace was due to trying to hold in a fart

this is now my go to for arguing against my inner catastrophist! Love it!

Hello all, just catching up with everyone’s latest news.
leslie I really don’t know what to say, such a huge decision to make and I applaud your openness in discussing it. I truly hope you are as comfortable as can be with your new mattress and palliative team. How’s the kitchen coming along?

flippy I was so relieved to read that you got good news, what a wait that must have been.

toofar I hope the talk with the school goes well. Dd2 was in the 6th form when I was diagnosed and we spoke to her pastoral team. They didn’t make a great fuss but discreetly told her who she could speak to if she was upset at school, which she was a few times. They were great actually and possibly also wrote to her chosen university when she was applying. They didn’t confirm they had and we didn’t ask but she got a place and graduated last summer. I’m really sorry to hear how drastic your surgery will have to be, that’s another level of cruelty to get your head around. I hope it doesn’t come to that.

Can I ask a bit of advice from the bowel experts please? I’m cooking dinner for a friend next week just a few days before his major op for bowel cancer. He’s had rads and oral chemo and now this long op to remove the tumour which will result in a bag, either permanent or temporary depending on what’s found on the day. His wife has said low fibre food but I don’t want to push for details, I just want to cook them something nice. So, is there anything I really need to avoid. It will be 4 nights pre op. and I don’t want to give him anything problematic. I’m aware he may cancel at the last minute which is fine.

Hello to everyone else, TQ and purple I’m thinking of you a lot and wish you both well.

MrsRhod when I had my bag fitted I was told to eat soft foods for a week so maybe a soft stew or a nice soup would be good

Flippy your DC must be so relieved you're ok after having to deal with the death of your DH. I'm having chicken stuffed with haggis for tea! Have fun catching your haggis

Hi purple, thanks for replying, was that in the week leading up to your op? I did wonder if there might be some restrictions pre surgery.

Oh no it wasn't, I read your post wrong. It was the week after that I had to have soft foods. As far as I know you can eat anything before the op, although mine was an emergency one so probably best to check

mrsrhod only white carbs - nothing wholemeal. And no fibrous vegetables (broccoli, cabbage etc.). Also no nuts or seeds. I'm sure they wouldn't mind you asking for suggestions. I would always prefer that as otherwise some people's interpretation of low fibre was quite odd and I'd end up being ill afterwards. I don't know what style of food you were thinking of, but something like a lasagne or cottage pie should be fine. Sorry, I'm vegetarian so I'm rubbish at thinking of non-veggie meals. I assume if there were any specific restrictions for the surgery they would have told you so you could avoid them, but I don't think there would be. They'll give him bowel prep and/or an enema beforehand so I don't think it really matters what you eat!

Enjoy your haggis Flippy and happy Burns night. And thank you for sharing about your DP.

Toofar it's bloody unfair

purple I hope they start to work soon I was on gabapentin for my nerve pain for years. It does take a while to kick in though.

lesley none of what everyone on here is going through is fair, is it?

Well, no, I suppose not. Life isn't fair. But sometimes it's extra unfair.

Do you have a partner? I know someone else who had to have her clitoris removed. She sees a sex therapist via NHS. I don't know if that's something you'd find helpful, but hopefully it is an option that would be available for you. Feel free to ignore me though if you don't want to discuss it!

lesley that’s really helpful about your friend - thank you

Waving to you MrsRhod

Is anyone else here on blood pressure pills? I had a bit of minor panic last night in bed because I felt as though my lungs weren't working properly and I had to make them work, if that makes sense. I knew I could breathe and my lungs were OK because I could take deep breaths without a problem but if just felt I had to consciously breathe. I laid awake til nearly 2pm doing my anti-anxiety exercises, reading to take my mind of things and propping myself up with pillows. Also worrying because I thought it would mean the end of the trial.

However, looking at the side effects of amlodipine, which I've only been on for 10 days, I see that shortness of breath / breathlessness is a really common side-effect so I think I will stop taking them tomorrow. Has anyone else had this?

I have the same friend as Leslie. Cancer is such a small world! But that does seem a particularly unfair aspect of the surgery

Hello All,
In mid 2016 those on a prior incarnation of this thread provided great calm, support and knowledge when I was diagnosed with breast cancer.

A sole parent of two tiny children I was bricking it, about how I would get all of us through treatment etc.

Well I did get through surgery, radiation and chemo, and have hardly posted since diagnosis but have lurked for 2 and a half years, amazed and humbled by a lot of you not least Leslie.

I never realised how young you are until the start of this thread Leslie, and am in awe of what you have and do provide to so many through your overseeing of this thread. You must have helped hundreds of people get through some of the toughest days of their lives.

So, just thank you. Pure and simple. Thank you.

That's a lovely post mother and a sentiment that we all share. Good to hear that you are doing ok.

Warm wishes to those recovering from surgery or about to undergo surgery.

How is the kitchen coming on Leslie?

mother that is so lovely and I couldn’t agree more. Sounds like you’re getting on really well now.

Hi everyone (too early for ?)

Hi Lacies. Can I ask a weight loss question?

(I know, the pre-cancer me would be so happy!).

I’ve just worked out that I’ve lost about a stone since Christmas. I haven’t been dieting as such, though no takeaways (predominately due to post-Christmas budget!) and more dog walks- up to 4 miles a day, no further. I’ve not been on chemo since December. I have plenty to lose, so going down a stone is far from being a problem in its own right.

So now because I am so used to being asked about “unexplained weight loss” I’m panicking.

I know why weight loss in chemo is a bad thing, but what’s the situation outside of treatment time? Should I be worrying do you think?

Sorry for the looooong post

Off to get some

Oh and yes Leslie kitchen update please

I wouldn't worry necessarily Namechange as long as you feel OK and not weak/dizzy anything like that. But if it carries on then it would be worth mentioning to your nurse. Presumably you're not taking steroids anymore either? It's amazing how even just a couple of days a cycle can affect your weight.

TQ oddly I have had a very similar experience, with the feeling like I needed to make an effort to breathe. I've never been able to describe it. I found that when I didn't actively breathe, my body just didn't do anything. I'm sure eventually I would've taken a breath, but it was quite disturbing. It was a while ago, before my lungs were so messed up. I think in my case it was probably anxiety as I wasn't on any blood pressure medication. Anyway, it's really horrible and it took me a few days afterwards to be able to sleep properly again without worrying it would happen again

motherlondon hopefully the fact you haven't posted much since means you're getting on relatively normally now? :) it's astonishing to think how many people must have passed through these threads over the years. I'm so glad that it was helpful to you.

The kitchen is nearly finished. They have to wait a week now before they can seal the worktop and do the tiling. But everything else is sorted. I have seen photos. I'm hoping I might be well enough to be wheeled to see it, maybe tomorrow :)

Thank you Leslie I feel fine. A bit breathless/chest painy but it’s been bloody freezing so I’m not too worried about that. Good point re the steroids. Love being off them- I have cheek bones again (for a bit!)

Kitchen progress sounds amazing! I’ve always put off getting mine done because I assume it takes weeks and weeks. Oh and because I’m lazy and there’s things I’d much rather spend my £ on!