Cancer support thread 63 for a handhold or advice and anything in between

[purpleunicorns]

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

Thanks noodles I'm not sure it the size is the tumour or like your say the size that needs to be removed around it. They did mastectomy yesterday. Which I feel ok about. It's only a boob it could be worse. They also mentioned they weren't sure if I'd have chemo first or after. And that id need to have to have the blue ink thing done with my lymph nodes. It's all a bit new at the moment but I'm sure I'll get there. My husband is coming on the 31st so he can take it all in for me. Hope your treatment goes well. X

Meant to say mentioned mastectomy yesterday not they had done it! Brains a bit all over the place.

I hope you are recovering well from your mastectomy

Oops haha cross-posted!

How did everyone tell their children? Mine just know mummy has a poorly boob at the moment. We will need to tell them when I'm going into hospital and if I'm going to look ill but I don't want them to know more than they have to. I'm going to have a word with school on Monday to make sure they have support when they go back in September.

ranout I got given a book called Mummy's Lump. It helped 4yo DS understand.
The big cancer charities have lots of advice on their websites on telling DC of different ages.

Quinoa I was honest with my 2 which seems to be the advice (in an age appropriate way) I told them separately when I was not feeling tearful. I basically said that I had found a lump in my breast (called breast cancer) and that I needed an operation to take it out, but 1st they were giving me medicine to make it smaller and that the medicine would probably make me feel a bit poorly. That worked well for me and both seem quite ok with proceedings. I do have the Mummy's Lump book too, my treatment is the opposite way round to the book, plus just looking at it made me emotional, so I just said I had a book about my lump if they wanted to read it (which they haven't)
Glad your hubby can come on 31st, it makes it much less daunting. I had a really good friend along with me. I had news that mine hadn't spread then as my CT scan was clear, so didn't take in a great deal of info after that!

My consultant who did the biopsies and markers told me if I was looking on the web to only go on breastcancercare or Macmillan as others tend to not always have the most up to date information.

Thanks noodles. I think my 7 year old will respond to knowing just what she needs to know. My 4 year old will just take what I say I think, but he's more emotive than her.
Me and my DH have spoken about the appointment on the 31st and he's going to be in charge of taking notes and asking questions! I've told him to look at the Macmillan site.
Hope everything goes well with you.
Gosh it's a mind field! I just have to keep reminding myself as much as it's shit it could be much worse, it's only a boob.

Noodles I have mine every 3 weeks, I almost cried when I realised that it's not next week but the week after I get my next chemo. Such a relief to have an extra week of feeling normalish! I feel sooo much better today, it's amazing what a difference 24 hours makes

If you can get yourself away camping, not sure if your chemo is the same but mines cumulative so I'll feel worse after every treatment. Enjoy holidays while you can

Waves to the newbies 👋 sorry you're here but loads of advice and a kick up the bum when you need it on this thread

Thanks purple (ps how do I tag?!)

Interesting to learn we'll all be ok going away. We're just about to cancel our 2 weeks mid aug in Turkey which is the right thing to do. But I'd love to still have a few nights staycation here and there. Any tips, apart from a toilet nearby!
Ps sorry if I'm a little flippant it's my way of dealing with shit.

Hello Minnie and ranout.. Sorry you have to join in but everyone is lovely.

I'm awaiting biopsy results for endometrial cancer. 5-7 weeks to go.

Just back from the cinema with DH to see Mamma Mia Here We Go Again. Everyone should go.

I'm sorry I'm having a massive wobble tonight.

My best friend came over and she's a breast cancer nurse and she talked me through all the stuff at the clinic next week then had a feel, (we're both nurses) she wasn't able to hold her face together. Now I'm kind of expecting it to be awful.

She said to ask about fertility treatment if it's not hormone receptive but it all feels a bit much right now. I don't even know it is anything yet!

Aw fatty the waiting is awful, and I know there's nothing anyone can do or say to put your mind at rest right now but try to keep in mind that most breast issues aren't cancer and even if it is you've done all you can do by going to the doctors

You WILL be fine. I know it feels like your world is crashing down right now but you will get through this

Quinoa don't worry about being flippant, I think most of us deal with things that way on here I think you tag by typing a @ symbol before the name of the person you want to tag. If not don't worry, everyone will read your messages anyway

fatty did your friend mention breast cancer nurses being in the results meeting? Our hospital has one come in with you and take notes of what the consultant says. She then took me to another room and went through it all again.

fatty try not to panic and remember that your friend is also emotionally involved as she wouldn't be in the same way with any other patient. She is probably upset to find you in this position, so try not to read too much into her reaction. Most lumps are not cancer, but if it is, you are getting it checked and the care/treatment is superb (in my experience)

purple that is a relief that you have the extra week to feel normal(ish) in. I have woken up feeling queasy, if I eat it seems to keep it at bay for a bit, but really don't fancy any food at the mo.
Will make efforts to camp as you are right, with the cumulative effect I probably won't feel that great after my 2nd. They did say they would tweak my nausea meds if needed. It is bearable, but just not that nice.
I hope you continue to feel better again today.

noodles try not to worry about feeling progressively worse. This is what we're all told of course, but tbh, I didn't really any difference, other than feeling so much better after the 1st one. I was like a zombie for a week with what felt like the worst flue ever. Every single bone and organ and muscle in my body ached terribly.

Yes, the neuropathy developed and increased, but it wasn't debilitating, just somewhat annoying. My resilience and stamina decreased so I just watched more tv. I allow twice the normal time to go anywhere because I walk slowly now. My hair fell out but that didn't affect me.

For me, the MOST IRRITATING thing was toenail damage, meaning I couldn't wear normal shoes because of the pressure on the top of them. Still suffering with that. It took me AGES to find shoes I could wear to walk in...

Hello ladies. Have been reading this thread with interest. When I was diagnosed 6 years ago with DCIS I wasn't on Mumsnet but I wish I had been. The support would have been great.

I had a mastectomy then plus removal of sentinel lymph node. Thankfully everything was clear, so no other treatment needed. Took me a few months to recover physically, as went back for more reconstruction operations. My DD was 10 at the time but just told her I had to have an operation and she never questioned it.

Fast forward 6 years and I found a lump in the other breast. Had all the tests a couple of weeks ago. It's not benign or cancer, but could go either way so I'm having a lumpectomy on Friday. Trying not to think about it too much but I know by Friday I will be a bag of nerves.

Wishing you all well.

Thanks TQ I will try not to worry too far ahead. The consultant told me the first 2 lots would probably hardly effect me but by the 3rd I would be feeling it, so kind of expected minimal effects to begin with. It is just like really bad morning sickness and I feel a lot worse today than I did yest. Not helped by having the grim job of self injecting something to boost my white blood cells into my tum this morning too! It really made me cringe!

The toe nails sound very irritating and painful. I guess at this time of year you have a wider variety of footwear but in winter/spring time that must have been difficult.

I just can't self-inject. Fortunately I live so close to my surgery I just made daily appts for the month I had to have them, and the District Nurses at the weekend.

I had to give up on having pierced ears at 18, because everytime I put the earrings in, I fainted.... no pain, just my mind/body saying NO!

Year I was a bit shocked to see that you believe you might have endometrial cancer? I hadn't realised this was a possibility. You know that biopsies are carried out for many reasons? not primarily cancer? They do them to check for hormone imbalances, fibroids, polyps, and other things, which yes, will include the presence of precancerous cells (very treatable). I think too, that you said somewhere something about HRT, and possible thickening of the uterus as a perimenopausal symptom?

I'd hate to think you were worrying yourself unnecessarily. A 5-7 week response time to me sounds like they're not thinking about cancer - you'd be having more tests a lot more quickly if they were were. And I think you said you had blood tests when you were worried about ovarian cancer too, and nothing has shown up in those.

Is it worth going back to your doctor and asking for more information? You should have received copies of the consultant's reports too. What do these say?

It's horrible waiting and worrying and thinking worst case scenarios, which we all do, but all this stress may well be unwarranted... It would be lovely if your doctor could put your mind at ease.

Welcome mrswhiplington but sorry you're here. Fingers crossed for Friday

quinoa you can make people's usernames bold by putting a * either side

noodles I haven't had the GCS-F injections, but I have to inject myself every day with an anticoagulant as I have a pulmonary embolism. I don't find it too bad. Someone told me to wiggle my toes while I'm doing it, as a distraction. I'm not sure if it makes any difference!

TQ high fives for my manky toe buddy you're so knowledgable about all things gynaecological! Hopefully that will be reassuring for Year :)

Waving to everyone

I don't know much about biopsies at all. I didn't get to ask any questions of the consultant as everything happened so fast and I was still in shock at going in expecting an external scan but having also an internal one then the biopsy taken.

He asked about cancer in the family and I just got this feeling from him. He did say it might be caused my HRT but from my point of view I've had most of the symptoms since before I started on the HRT. I'm bleeding on and off too since starting my period, having to biopsy, flooding, finishing my period and now I'm losing lightly.

He told me I had a fibroid that had probably been there a while and he wasn't concerned by it at the moment.

I know my ovaries are fine which was a relief as I had a scan of them a couple of years ago and there was a problem getting the okay and the initial scan a month ago, she couldn't see them. The blood test for OC was 2+ years ago.

I was told to do nothing until I got a letter from them. They said the consultant would write to me direct with the results.

Thank you very much TQ.

That must have been frustrating as an 18 year old desperate to wear earrings TQ!
I think I did it a bit too gingerly and prolonged the agony a bit. My mum watched me do it, saying she couldn't do it too & we were both cringing. I shall wiggle my toes 2mo Leslie thanks for the tip.
A student nurse friend of mine said she was doing district nurse visits and a lady she was visiting got her to do it & asked her to pinch her skin as hard as possible as she found it was easier to do then.

I slept for much of the afternoon & feel less sickly since I woke up. I hope everyone has had a decent weekend. My Fitbit is probably wondering what has happened as I have not even got to 2k steps today!

Hi to all newcomers to the thread - sorry you are all here but very welcome

Struggling with bowels at the mo - poxy oxi and capecitabine seem to be fighting each other, and I think my mum thought lots of veg and fruit would be a good idea but I was in agony with wind last night so exhausted today. Bloomin chemo makes me more unwell than the cancer!!!

Hugs to others with nausea and post chemo tiredness - am right there with you! Nearly boiled to death in the park with my little boys just now and I get to drink...warm juice and tea!!! - would kill for an ice cream!!

Ok enough whinging!

for everyone especially those in limbo waiting for results ...