Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

Also wanted to ask if anyone had heard anything from Otter?

@Bloodybridget hoping those neutrophils perk up - so sorry to hear you are having a down turn.

@AlbertCampion 'O Campion! My Campion! Gluegate has gone on rather and all my chemo-buddies have long since graduated - apart from the magnificent @MrsPnut

Like you and @HauntedDishcloth my hair is growing back (maybe aiming for Trinity from The Matrix). I may also have a couple of job interviews coming up - one might even be in person! I'm dithering about the hair situation - it doesn't look as though I actually requested this cut and I do look rather militant - which is fine for everyday out and about but perhaps not for a job interview. Then again I don't want to commit to a wig that might be sussed and/or may not match my later appearance. Ah - dilemmas.

Memo to self - having cancer is not an excuse to buy dd a lifetime's supply of bday presents

Alas not a word wrt Otter.

@Bloodybridget I'm so sorry to read about the news about your blood tests, it is awful, you must feel so deflated and upset. I will pray that your neutrophils improve by next Wednesday xxx

I am also not in the best place at the moment. I had my CT scan on Monday following completion of my chemo and surgery for OC. I had a call from the CNS yesterday to ask me to come in next week rather than the week after as previously arranged to see the oncologist to discuss a nodule on a ligament connected to my liver. This nodule was visible on my interval scan at the end of February and hasn't changed in size. What is confusing me is how the letter to the GP prior to my surgery mentioned this nodule and when I was told after surgery that all visible disease had been removed, I presumed that it had gone, but apparently not. I now have to discuss whether it would be better to 'watch and wait' or have it biopsied. I find any waiting torture and so will press for a biopsy. I am so upset that this was supposed to be the scan which showed I am NED and then I would start on maintenance and instead I am now facing more appointments and worry whilst this nodule is investigated and I am leaping in my head to further surgery and chemo.

Thinking of all you ladies going through hard times, waiting and worrying, it is all so dreadful xxx

@AlbertCampion Good to hear you're through radiotherapy. I think we do get "institutionalised" to having so much medical stuff going on so it's no surprise to feel adrift when it tails off. Let us know how the course goes.

@Bloodybridget Oh no, a setback due to the low neutrophils is rubbish anytime but particularly unfair when you've had a break in to deal with. Adding my contribution to all the positive vibes coming your way to get those numbers up!

@Elle200 The facebook group is called DIEP Reconstruction UK. Also Keeping Breast may be of interest.

I'm glad to see you back Fizzy but I'm obviously sorry that your having to through this. I send you my love Liz xx

Hope everyone is well, sending love, support, and positivity.

Day 14 of daily radiotherapy on my vagina. The area has been incredibly dry for about 5 days. Bit of spotting today, is this normal ?

Also sending positive vibes to increase those neutrophils @Bloodybridget

@FizzyOrange sorry to hear about your nodule. I'm in a similar position with a nodule on the abdominal wall and I'm now booked in for surgery as theyre fairly sure its a tumour. If they're looking at watch and wait or biopsy for you then they must think there's a good chance its not a tumour? Hopefully you can ask the onc about it next week and they can reassure you about it. It is hard waiting though - I have to make myself think about the now and not jump ahead to all the what ifs and what nexts but it isn't easy.

Good luck with the interviews @Acinonyx2 and making the decision about your hair!

@AlbertCampion whats a moving forward course?

Sending much love to everyone who needs it - many people going through tough times at the mo

@Acinonyx2 well, my fearful trip is done, and I hope yours isn't too far behind. Are you reaching the end of radio now?

The hair thing is a dilemma. I have also abandoned all wigs and hats but I do wonder if people think I have just chosen a very severe crew cut. Do they know about your health situation? Whatever you decide to do, I hope the interviews go well - it sounds v exciting and I am in awe of you being so focused when you have other things to dwell on!

@FizzyOrange so sorry to hear about your setback. I hope they give you the biopsy - waiting seems v cruel.

@Bloodybridget got everything crossed for a better blood count.

Thanks so much for all the lovely messages.
@Runningwithoutstopping I like your new name!
@FizzyOrange sorry you have this new anxiety to deal with, do hope you get good news asap.
@AlbertCampion nice to see you!
Loving the Walt Whitman (mis)quotes although unfortunately my memories of the poem continued to "dead " and am now in tears - have noticed early mornings are my weepy time, if weepy is going to happen . . and ironically I had my last session with my brilliant counsellor on Tuesday before she disappears for six weeks; was assuring her I would be fine, she didn't need to worry about me at all, ha ha. But am listening to Schumann piano concerto which is sublime. Next to family and friends, music will get me through.
Sending love and warm wishes to everyone here - sorry I don't feel able to keep up properly or check in with everyone.

Hi all I haven't posted for a while. Finished my first cycle of chemo which seems to have been okay not too many sideeffects. Although I was a bit off my food that doesn't happen often. We are on annual leave from work which is the first downtime we've had since my diagnosis. I've got an mri booked with gynaecology not sure why but if it let's us know whats going on then I'll take it.

Sending positive vibes to everyone

Oh I am sorry, @Bloodybridget - I didn't mean to make you cry! I tend to get weepy in the evenings. I find a good cry does help but I think it worries DH. Got everything crossed for your neutrophils. xxxx

@Bloodybridget I did think about that but the urge overwhelmed me! I've been characterised as listening to Leonard Cohen while reading Sylvia Plath - which is slander as I've never done both at the same time. I should put out a book: if you are feeling dismal here are some poems to make you feel worse.

How about this instead - I'm thinking of making a poster with it: 'Hope is the thing with feathers on....'

@FizzyOrange lovely to 'see' you but how incredibly tedious - how loaded with dread words like 'nodule' have become.

@AlbertCampion I haven't even started rads yet - due to begin next Tue (over 5 weeks late). These 2 jobs have come via contacts - I'm not ready otherwise to be applying for anything. They don't know about the cancer and I'm not inclined to go there.

Wondering how people are feeling about 'opening up' on the 19th? I haven't been as cautious to date as some (never fully shielded) - but I also don't feel I can completely go back to normal either.

FizzyOrange sorry to hear about your news. Im waiting to see consultant about first CT scan after op so am on tenterhooks.
Hope yours turns out to be nothing. So disappointing when you think you have had a positive result from an op. This disease is so unrelenting
you cant let your guard down at all can you. Fingers crossed for you here

Acinonyx Im in two minds about Freedom day. Ive just been up to London on the train, off peak and wasnt expecting train to be packed, quite a lot of people not wearing masks already. I was more worried than I thought I would be . Trudged round the British Museum in a mask, v hot and humid so came out fairly sharpish ! Am thinking twice about further train trips now although got a trip to Worcester booked next week.

It's specifically crowds of people especially strangers that makes me nervous. I've been invited to a garden party - the host is anti-vacc so unvaccinated. We all have teens and younger kids - I don't know most of the others who'll be there. I really feel this is outside my comfort zone.

@thereisonlyoneofme waiting for CTs is top scanxiety - fingers and toes all crossed for you.

Morning lovelies

Welcome and a hand hold to newbies. Absolutely agree stay away from Google.

@Bloodybridget I sincerely hope your neutrophils sort themselves out. Such a worrying time hoping and waiting.

@AlbertCampion I feel that I will be paranoid when my treatment is finally finished. I think everyone assumes you just get over it and carry on as normal.

@Acinonyx2 DD1 is 18 on the 19th and I'm sat ordering too many things for her online. Cancer has changed my outlook on life a lot.

@FizzyOrange I'm sorry things are not so good for you. The waiting is truly dreadful but I'm hoping for a positive outcome for you.

@Happy36 Day 14, you are rocking the rads. Is there anyone you can ring regarding the spotting?

@Timmythetumourgotne glad your chemo went well with very little side effects. Hope your MRI goes well too.

@HauntedDishcloth I keep taking my sports bra off as it rubs on my scars terribly. I was glued together so keep picking at the glue as it is like big scabs. I like you makeshift shield.

Sadly there is no news from Otter.

Still waiting for the results from my lymph nodes that were removed. Then I will see my surgeon and then I assume radiotherapy will start.

Love to all.

HC x

Meant to say, I have hair. 😃

Thank you lovely ladies for all your kind thoughts and good wishes xxx

@Acinonyx2 I have thought the same about the word 'nodule'!

@thereisonlyoneofme hoping for good news for you for your scan, the waiting is the worst part xxx

@AlbertCampion I can understand the feeling of being without intervention. Much as I moan about my situation which is still packed with appointments, at the same time I don't want to be without them. I really don't know what I want.

@HumphreysCorner your hair is coming in nicely! Mine can't make its mind up, I am simultaneously shedding and growing. The gap between my chemos has confused it I think.

My weepy time is the evenings mostly. I am not particularly busy in the day but I tend to feel sadder as the day goes on.

Thanks HumphreysCorner. I will ask the radiothérapists on Monday. Oncologist is on holiday for a week. No spotting today. Vagina is also a bit less dry which is a relief (literally, the dryness is quite painful/annoying).

Hope everyone is having a - metaphorically - sunny Saturday. Take care.

Hi just after a bit of advice.
I have a follow up appointment from a scan I had which showed some concerning lymph nodes. This is the first appointment I have had face to face since I was told I have cancer (14 months ago) everything has been over the phone.
I feel I can cope fine with scans, blood tests etc but I get very anxious about consultants appointments.
Can anyone offer any advice on how to cope with anxiety?

Greetings all from a rather sleepy Top. I just had my 14th dose of Herceptin and it makes me dopey. Four more to go then I shall have finished the course. Just Zometa and anastrozole after that. The nurse gave me some weird cotton bubble wrap to stick inside my bra for lymphoedema after radiotherapy. I was very dubious but it is working. Who knew?

I seem to have been on this thread far too long but it is a comfort to have peeps who understand the endless round of needles and procedures and hope and tedium and fear that we endure. Love to all of you struggling with uncertainty and results.

I took a big step this week. My passport is running out so I have renewed it in my married name from 2016. I am now changing everything over to my new shiny cancer free name. It seems a nice way to mark the end of a chapter and the start of my retirement. Today in the hospital I changed my medical registration on my notes and confused the nurse completely! The lady in the high street bank was delightful and had had breast cancer and totally understood. It’s like a secret society when you find a fellow survivor.

I am going away for a few days this week. First by boat sailing west then by bike over the moors to a smart hotel. It will be so lovely to get away. I am still being very cautious as Covid is rife down here in the South West thanks to the G7 summit. Lots of my friends have been pinged on track and trace. I spend most of my time outdoors and avoid people. I quite like my hermit life. England looks a lot nicer from a mile offshore.

Sending granulocyte stimulating vibes to @Bloodybridget and crossing everything for @FizzyOrange that the nodule is a bland nonentity. Healing vibes to @Acinonyx2 and cheerful patience to @thereisonlyoneofme! Love to all
Top

Hope everyone is having a relaxing weekend and able to do something or talk to someone you love.

Does anyone have any advice for managing the diarrhoea and constipation? Mostly the constipation... it's just so painful, and hours on the toilet.

Oh the constipation I really do feel your pain My first tip is to start the laxatives before your chemo I didn't and I think I was my own worse enemy. Secondly try lying on your left side with your knees slightly drawn up towards your chest and try getting gravity on your side. Make sure you speak to your team and if you need something stronger get them to prescribe .
Bridget I love my new name aswell I think in the back of my jumbled mind my new found love of running may be about trying to outrun cancer. Logically I know I can't do that but I keep trying. I hope those neutrophils behave tomorrow.
Fizzy good luck for your follow up this week I will be thinking of you x
@Acinonyx2 I found this yesterday and thought of you:
"The reason birds can fly and we can't is simply because they have perfect faith, for to have faith is to have wings. "
J.M.Barrie
Love to all enduring pain,side effects or awaiting results.Xx

Thanks, Runningwithoutstopping.

I also have diarrhoea so is it ok to take a laxative? I haven't been prescribed anything.

@Happy36 Kitbot used Lepicol capsules which are psyllum husk based. I use dexamethasone to control when I have diarrhoea but I have ulcerative colitis so steroids are my go to when in flare. I also have laxido for when constipation strikes.

For the dry vagine, sylk lubricant, or YES internal vaginal moisturiser are both good and can be bought from Amazon etc. I used MIXA moisturiser because I bulk buy it when I go to France during my radiotherapy and only had two small sore bits externally but I did burn on my vulva which flaminal hydro cleared up.