Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

I’m am warm now thank you

The cap doesn’t always help but No when I was told that not everyone coped I thought they meant with the pain not that the whole body physically couldn’t cope

Trumpton no I don't think I was ever aware that a reaction like that was possible. It sounds almost like a form of shock.

I started coughing and immediately a nurse was on high alert . She bought me water and there I was ...gorne . Almost like a lying down faint . It got vair busy for a little while .
So there we go ! High jinks on the ward .

Every day a school day !

@Skap
Hit me with your best hats !
Thank you 😊

@Trumpton ooh excitement on the ward! Last week before my session they'd had someone have a dramatic allergic reaction and the nurses were having a slightly indiscreet inquest.

I was told to expect total hair loss with PaclitaxelThe nurse looked at my fine hair and said she thought cold cap wouldn't have worked for me anyway.
However, I didn't start shedding hair until day 22. I had my head shaved a few days later but in fact the remaining bristles never all came out and it is now growing again! I suspect if I hadn't shaved it I would have lost about 20% and could have got away with it. It seemed the right thing to do at the time but now I regret shaving it off Feeling a bit of a fraud!😒.
Perhaps yours is the same and will not fall out? Because I was expecting to lose it I washed, brushed and blow dried it as normal before I shaved it.

Anyway hats. I have loads because I started buying them in July when I was first diagnosed they were going to start chemo straight away and it ended up being October. A lot I bought were turbans and I hate them, they don't suit me. The nicest by miles as well as the most expensive are these. They look much better on.
These are also nice but quite warm.
I also have two wigs which closely match my hair. They are good for avoiding the "cancer" look when out and about but a bit uncomfortable for more than a couple of hours.

Ordered two hats ( one of each sort ) and will get dd onto it ! She is a wizz with jersey and has a serger / overlocker . I reckon if I hit the fabric shop she will have great fun making me hats .
Yup I thought a wig for “ out - outs “
Bit tired as I had double dose of piriton just in case .
Night night all .

Hello everyone
It's been a while since I've been on the thread but I just wanted to tell
@BrowniesAreSuper I was diagnosed with lung cancer in Dec 2017. I had upper right lobectomy (removal of upper lung) in Jan last year. I was in hospital 4 nights before returning home. My recovery was fairly quick, sleeping was a problem as I couldn't lay flat for a few weeks but I was active and went out for a walk everyday. I am pleased to say that my cancer was caught early. There was no node involvement and I was discharged from the cancer hospital 2 weeks ago.
I wish you well. It is always scary getting a diagnosis. If you need any further advice, feel free to PM or I'll check on the thread.
Sending positive vibes to all you wonderful posters

@Wombat22 congrats on discharge! That's really good news.
Trumpton sorry you had such a rough time with the cold cap. I hope you don't mind losing your hair too much. You might discover you have a really nice shaped head! In fact like Skap I never lost all my hair, I had a tiny bit of regrowth after getting my head shaved, and now I have something which could almost be described as hair. Her Emptiness made me laugh! How are you feeling now, can you eat?
Wishing everyone a calm and peaceful weekend - keep warm!

Had my second EC yesterday. The steroids have given me loads of energy, so we have put up our Xmas decorations, and I don't care that it's not December yet! My 6 year old is delighted, and we have had a lot of fun! He's going to a party tomorrow, which I hope to take him to, as will still be on steroids. Preparing myself for the crash and burn on Monday!

Have a lovely weekend everyone!

@Wombat22 oh big congratulations on being discharged! That's really good!

So nice of you to share about diagnosis and treatment. I might well think of a few things to ask and send you a PM, hope that's ok.

@CointreauVersial I had the dilemma of telling the children too and although my younger one (22) knew I was having tests and biopsies etc, the older one (27) lives in Madrid and the first he knew of it was when I had to call him on Friday last week and tell him the diagnosis and that I was having surgery this week. It was an awful shock for him and I can't really gauge how he's coping. I wish I'd told him earlier. There just didn't seem to be anything to tell before - at each stage it wasn't a big deal, and then it got bigger, and do I tell him then, or wait until I actually know anything... It was hard and still is, it's only been eight days since my diagnosis and I've already had surgery and I don't know yet about radiotherapy. It's all a bit of a whirlwind and I haven't quite taken it in myself yet. I'll have a look at the blog @Skap recommended, hope it helps you too x

Brownies you are welcome to pm any time

@Trumpton - shame about the wildly inappropriate M&S Advent Calendar gift you got this morning....here's hoping for some soothing skincare and cheering makeup in the days to come!

Thanks for the different perspectives on telling the DCs. Tomorrow I see my oncologist for the first time, so should have an idea of timeframe for the radiotherapy. It was easy to explain away the hysterectomy (to be honest, none of them enquired too deeply about the reasons for it) but I won't be able to keep radiotherapy a secret. I just want to wait until they're all home, and tell them all together.

I hate the thought of them being upset. I hate the thought of people feeling sorry for me, or pitying me.

Regarding the oncologist appointment tomorrow, anything I should ask? Apart from the obvious questions....

Just jumping in with a question, although it's probably too early - I've had a sore place in my mouth for over a week now, there's a scratch on my gum which isn't healing, and my tongue feels slightly painful in the same area, although that's better than it was. Also, a month after last chemo, most food tastes weird again. I used Corsodyl mouthwash for a few days, which didn't seem to help, and I wondered if that might be affecting my sense of taste (so I skipped it last night).
I could get an appointment for the walk-in GP today, or ask for a phone call. Or, I guess I could ring the oncology hotline, or just wait till I see the consultant for my scan results on Wednesday and mention it then.
I know it can't really be anything serious, maybe my immunity is still low. But I am a bit bothered by it, and fed up of it hurting, and the taste issue is really annoying!
Advice please!

The only mouthwash that works for me is something from Amazon called Genigel, they do a wash and a eh..... a gel. It has hylauronic acid in it something I believe promotes healing. A denstist friend recommended it to me. Hope you feel better soon.

OK it helped to write it down, I'll just wait until I see the oncologist! @NaomiFromMilkShake thanks for the recommendation, if it doesn't clear up soon and the oncologist doesn't suggest anything I'll give it a go. I'm a real baby about putting strange liquids in my mouth!
@CointreauVersial right now I can't think of anything to ask that isn't obvious, but I hope the appointment goes well for you, can't remember if you said your DP would be with you?
@DaisyBD how are you feeling now?
@Trumpton hope you had a ok night. Also waving at @Skap hoping your insides are toeing the line, and at @Zorgothslugofdoom, did you manage to take your DS to the party, and I hope whatever post-chemo nasties hit you, they do it gently!

Bridget. I had several sore mouth incidents during chemo and for a while after. I think, as with the inside of your nose, the delicate lining is more susceptible than usual. I would second trying Genigel if the Corsadyl isn't helping. MY dentist recommended that to my DH when he was having quite bad gum problems and he found it more gentle than Corsadyl, but I think a call to your chemo unit or to the GP would also be in order if you are worried. There is more than enough to cope with during and after treatment without suffering any unnecessary discomfort or worry.

Cointreau I hope your appointment goes well today. It is probably too late now as you will be busy getting ready if not already on your way but I find it helpful to write down in advance the questions I want to ask. A couple of time I have come out and realised that there was something I had forgotten to ask having got side tracked by the answer to my first question!!

I am also taking pineapple juice every morning, and I let it pool in the bottom of my mouth, it stings a little but the stinging is getting less day by day, but as Wednesday is poison day, watch this space.

Oncologist appointment went well, thanks, and pretty much all questions (mine and DH's) were answered. Cancer was grade 1, stage 1B. Radiotherapy will be for five weeks (daily Mon-Fri) external, then two days internal/brachytherapy, and thank goodness it can wait until after Christmas. She described the radiotherapy as reducing the chance of recurrence from 5-10% to 1% (and, let's face it, there's probably a 1% chance of DH, DMum, or anyone else around me suffering cancer at some point in their lives).

We briefly discussed telling the DCs, and she suggested that I tell them the cancer was discovered after the hysterectomy, amd that I didn't want to tell them while something was "suspected" but not "proven". A white lie, I suppose, but it is true that the true extent of the tumour was only discovered after it was removed. It lets me off the "why didn't you tell us sooner?" hook.

Just joining you all.

I’m 32 years old and have a 14 month old delightful little boy.
I was diagnosed with bowel cancer 2 weeks ago, stage 3. I start chemo on the 11th December. It still doesn’t seem real the only symptom I had was abdominal pain which was on and off.
They aren’t sure about fertility but also said it can take a few months to successfully harvest eggs so we aren’t doing that and hoping for the best.

Hi everyone, I haven't been on for a while, wasn't in a good place after radio finished, the burns were bloody awful and had to go back for a lot of help in the end, I did my best to treat them but it wasn't good enough and needed experts to sort it out.

Went for the bloody colonoscopy that no one seemed to know why I was having it and it turned out it was a referral from my gp two years ago when I mentioned to her about weight I'd put on around my stomach.

Having another scan this week to look for secondarys.

I'm also having trouble with my eyesight which I've been told by my sons optician can be a side effect of the treatment.

I'm so sorry for not responding to everyone but I have read all the posts, hello to new people since I last posted and best of luck, and to all of you who were here when I first posted during the summer, you are all in my thoughts always.

Squiffy so sorry that you find yourself in this situation. I have found this thread to be an amazing source of support and practical information from people who know exactly what it is like to go through the whole nasty experience. I imagine you are still in shock and coming to terms with the diagnosis and what you have been told about treatment etc. Please feel free to come and talk here whenever you need to.

Ellenora the chemo effected my eyesight too for a while. For a time my vision was quite blurry and I couldn't read anything on the TV screen even though I was wearing my glasses. It seems to have settled down again now after a couple of months but my optician said that there is probably no point in going for my routine eye test until we are sure the side effects have cleared.

The burns from the radiotherapy sound horrendous. That must have been seriously painful and unpleasant.

I am currently experiencing muscle and joint pain that is really limiting my mobility. I have very dodgy knees anyway but this seems to be affecting the inner thigh of my right leg making any kind of step up or down very painful. Not sure if I have actually pulled a muscle or if it is the anastrazole. Joint and muscle pain is listed as a side effect. There really is no end to the undelightful surprises that this disease and its various forms of -torture- treatment throw at us is there

@ellenanora5 - sounds like you have had an awful time. Hopefully on the mend now. I'm dreading radiotherapy, although anecdotally the side effects are not as bad as chemo. What did you find to be the best way to treat the burns?