Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

@medianewbie - sorry you find yourself here, and I second what everyone else has said about the waiting for results and not knowing being the worst bit. And being messed around with the appointment definitely doesn't help - but the whole system is under so much strain at the moment.

I am feeling frustrated today as I am waiting to move on from chemo to RT and yesterday decided I should try chasing my planning appointment up, as I still hadn't heard anything and it was requested 5 weeks ago. I wasn't sure how or who to call but I thought I'd try my BCN even though it was months since I'd spoken to her. She was actually super helpful, and I'm glad I chased. But the bad news is that the appointment request hadn't even made it onto the system yet (something to do with 2 different trusts being involved, and one part of the process involving a paper letter. Sigh.) She has re-requested, but warned me that they are very over-stretched at the moment and it will be at least 4-6 weeks before I get the planning appointment, and another few weeks at least before I start treatment. In my head, I thought I'd be doing RT in March/April, but it now looks like it might be May/June or even July. I just want to crack on, and also can't help worrying about the clinical implications of such a long delay.

@TopOfTheCliff - I'm sorry you are still swimming with the hippos, and hope you can emerge for a nice rest on the bank soon.

@WorryMcGee - I've been thinking about you. How are you doing today?

Wishing everyone a peaceful Friday and weekend. I have a funny novel on the go (Really Good, Actually) and am looking forward to time on the sofa at the weekend to finish it.

@ajandjjmum
@nimbostratus
@TopOfTheCliff

Thank you. It seems minor to moan about it when I'm not even dx yet. But my Mother died from Ovarian cancer 9m ago & the NHS 'missed it' (she lost 5st in 5m, couldn't stand up, was stage 4 before they even scanned her). My Partner also died of Bladder Cancer (in 5 weeks) last year. Both lived in different NHS trusts to me but my local cottage hospital is patchy at best of times & this is not best of times for NHS so I'm not confident they'll 'spot it'.

@dotty2 : x post
Sorry to mither I am aware that it's more than 'patchy' everywhere. I'm glad you found someone helpful to chase things for you. I'm reading a book by Philip Pullman atm. I was ordering a set of HDM for Dd online & it sort of 'fell into' my Amazon basket :) Hope you have peaceful weekend with book

@Nimbostratus100 I spoke to the chemo unit this morning. They told me that they use your reaction to the first treatment to adjust future treatments - this could be why you feel better after the second treatment.
Hope you're feeling good today.

Going for a patch test for microblading on Monday- chemo unit have said it's OK to get them done before I start treatment. The lovely lady that's going to do them wants a consent from consultant, which apparently they organise quite quickly.

Just to say I'm back now. Had (v brief) ultrasound - 'no issues' so that's good. Also had punch biopsy of dimple. The local didn't 'take' so it was nippy but done now. Results on 10 March. Thanks for listening to me xx

hoping for the best - keep us informed

Great news @medianewbie that sounds very encouraging. Keep us posted, and you can always come back and dump your worries here while you wait for results.

Today’s update is that I am now about 98 percent healed but banned from exercise until it’s 100 percent. The nurses know me too well! No yoga or cycling no gym classes no allotment digging or boat sanding… So I’m knitting another bear hat for my latest favourite baby and trying to be good. I am feeling a little better now. I have a plan for negotiating with the oncologist next week.

Sending love to all
Top xx

Thank you for all the lovely replies earlier this week. I’m enjoying visiting my son at Uni this weekend and am in awe of his capacity to consume a large three course meal! No wonder my food bill nosedives during term time.

@TopOfTheCliff hope the stubborn 2% behaves itself and that you’re back to doing all your activities soon. Keep fighting off those Hippos
@dotty2 sorry to read about your frustrating delay in receiving your RT. Do you have an oncologist you could contact to see if they can fast track your planning appt in light of the delay?
@WorryMcGee hope you’re feeling better now. Every parent I know has struggled and had bad days. Please don’t worry, your DC will know they are so loved and all will be well. One bad day does not undo all the good days
@medianewbie keeping my fingers crossed that your stay here will be short

Sending best wishes to all for a peaceful weekend.

@WorryMcGee I also hope you’re feeling a bit better now. It is so so difficult to take care of small children at the same time as going through this. My daughter was 3.5 when I was rediagnosed. I’m almost a year on now (ugh, hate the anniversary looming but that’s another matter) & a year later my patience is in tatters. I’ve shouted at her more times than I would ever like. I’ve even had a full on meltdown - worse than hers! - when we were late for school AGAIN - & she wouldn’t put her shoes on.*

we always cuddle and make up afterwards and I tell her I am very sorry for shouting and that mummy is just so tired and that she will try harder. It’s always ok. Doesn’t stop me feeling shit though.

I know yours is little little - she won’t remember. And honestly just saying sorry (even though she won’t understand) and letting go of guilt of you can will help. We are parenting small children in the worst, most stressful of circumstances.

*in the end, she looked up at me, and yelled back “I’ll do when you’re calm mummy!” and I had to laugh. A 4 year old with more wisdom than me in that moment. Hats off to her.

Thank you so much, all of you. I’ve been in a pretty dark place, DH thinks it was about time I lost it as I’ve been pretending to be fine for ages and I clearly wasn’t - but I still wish I hadn’t lost it in the way that I did. I’ve told her I’m sorry so many times, and made her her favourite meals, and read the hungry caterpillar 8 billion times and bought a glittery one in a shop that she definitely doesn’t need because we already own hungry caterpillar EVERYTHING but she spotted him and 🤷‍♀️. I know she won’t remember it but I still feel horrible and weepy. I’ve cried a lot less today. The problem is, I know I’m still angry so although the lid has gone back on I’m worried it’s going to come off again. I don’t know how I can ever not be angry and I don’t want to turn into my mother. I understand her more now though. I was 7 when she was diagnosed.

@mowly77 your daughter sounds awesome ❤️ as much as people tell me it only gets harder as they get older I can’t wait for mine to be able to talk!

The talking is definitely useful @WorryMcGee ! Also for what it’s worth I don’t think it gets ‘harder’ as they get older; it’s just different challenges — and rewards. All ages and stages have hard bits & easy bits; fun stuff & terrible stuff. She was an easy baby & I was lucky she slept well, but a baby is still bloody hard work!

I also definitely have a new insight into my own mother. I must have been about 8 when she was diagnosed with breast cancer & 10 when she died. She was a single parent. My heart goes out to her all these years later.

Hi, I've been lurking for a few weeks now, and finally plucked up the nerve to come out of the shadows as would love to join the discussions rather than just reading. I've thought twice about posting as I don't want to worry anyone who is in the waiting for results stage but I could really do with being with folk who 'get this'. With my family and friends, I'm spending so much time convincing them I'm fine and it's all going to be fine but it's exhausting.

I had a routine mammogram at the start of the year and was called back to the assessment clinic. On closer examination, could feel a lump but whilst a bit worried tried not to think too much about it as I'd had a previous cyst and there was lots going on with both my daughters back from Uni and sitting exams, going through relationship breakups etc. So I didn't tell anyone about the clinic, went alone (husband was working abroad) and was told there and then that the lump was very unlikely to be benign. They biopsied and two weeks later, it was confirmed as an invasive ductal carcinoma. Luckily early stage and with no apparent spread to the lymph nodes. My surgery (lumpectomy and sentinel node biopsy) is scheduled for Thursday.

So far I think I've coped pretty well with the news...I've just focussed on making sure everyone else is doing ok...but I am worried that this doesn't really feel real, I haven't cried or been angry at the diagnosis, I just feel a bit detached from it all. I also feel really fit and healthy and so Im concerned that after the surgery when I'm feeling sore, and am unable to exercise, drive etc that reality will bite hard and so it would be lovely to have a place on this thread where I know people will understand.

Good morning @Atreus and welcome to the thread. It takes courage not to post so much as to admit you belong here with all that implies. Have you told the family yet? They might get suspicious if you disappear into hospital on Thursday and come out with a bandaged boob! I think you will be impressed with your kids when you tell them. I know all my adult DC have been amazing.
have you had the pre op chat yet? The nurses are great at making it all sound manageable and they will probably give you a sweet little heart pillow to tuck under your arm. If you have any questions ask away. There are lots of us here who have had the same procedure.
Best wishes
Top x

Excitingly I am doing a First Aid course today with DH. It almost feels like a date!

Thanks for the warm welcome @TopOfTheCliff! Yes, I told my husband when he came back from his trip and then told my daughters once we'd had the official post-biopsy diagnosis. All shocked and worried and the girls both rushed back home for the weekend...but I think once they saw I wasn't at Defcon 1 that they're doing ok. They also brought me copious amounts of Cadbury's mini-eggs which, as a scientist I know for a fact, are the solution to most, if not all, of life's problems.

@Atreus good morning and welcome to the thread. I’m just a few weeks ahead of you. I recognise all the feelings you describe, and still feel an element of disbelief that it all happened to me, particularly as my lump was too small to feel.

I found not being able to drive annoying, so I made arrangements to be taken out every day from two days post op. I channeled my inner Driving Miss Daisy. Even a short drive and walk made me feel much happier as I’m used to daily dog walks.

Aside from no gym work I’m pretty much back to my normal routine three weeks post op. One tip is to get prepared with a range of post surgery bras. I couldn’t get comfortable at all in two that I bought so had to make emergency next day purchases. The enormous proportions of Megaboob defied most fabrics and only the soft Theya bras were bearable. However I had a therapeutic mammoplasty and SLNB so you may well have much less swelling.

Mini eggs are well known to accelerate healing so definitely tuck into your stash.

Thanks so much @KefaloniaKid, it's very reassuring to hear from someone in a similar situation and thank you for the bra tips. I only have underwired or sports bras to control my ample norkage so Monday's job is to check out some comfy bras for post surgery with less scaffolding.

Hello everyone, I have posted before but generally just read the thread. I was diagnosed with invasive ductal carcinoma of the breast last April. I had node clearance, lumpectomy followed by radiotherapy. I then began the nightmare of hormone blockers. I’m aware most people tolerate them but my body protested. I was told to stop arimidex because of side effects and then started on tamoxifen which I’ve also recently stopped due to nausea,dry mouth, dry eyes, causing visual impairment. I lost my appetite and a stone in weight. It also caused constipation and irritability of my bladder especially at night because when I was lying down I felt something was pressing on it causing me to wake every hour to go to the toilet. To top it all I now have received a letter saying my recent bowel screening was abnormal and I have to go for a colonoscopy.
I phoned my GP surgery and had a phone consultation but the doctor said I was only allowed to talk about one symptom only. She ended up prescribing tolterodine to calm my bladder and was adamant she couldn’t address my fatigue, dizziness, constipation pain in my abdomen or weight loss as it was one symptom per consultation. @TopOfTheCliff how I wish you were my GP, although I know you’re retired.
I ended up phoning the hospital where I had my surgery and they’ve ordered bloods, urine sample analysis and a scan. I’m scared stiff my disease has progressed or I have a second primary.
Hi to all of those new to thread, I’m sorry your here but glad you’ve found this excellent, supportive thread.

Oh @Mycatispretty I am sorry to hear of your woes and of your unimaginative GP. I hope the bloods will include screening you for diabetes and thyroid problems which can cause weight loss. May all the tests be reassuring and all symptoms due to the pills and nothing more worrying!

@Mycatispretty - I remember you from a few months ago because of your user name. (My own cat is slightly odd looking) I'm sorry to hear about your symptoms and the unhelpful GP. I hope you get some answers soon.

@WorryMcGee - good to hear your update. I don't think you have to deny your anger - cancer is shit for anyone, but it is particularly cruel for those of you whose children are so small. On the 'does it get harder or easier' question re babies and small children, I found those kind of pronouncements baffling. As @mowly77 says - every stage is just different. But everyone's experience is different too, depending on their personality, what their children are like, and what life throws at them. My girls are teenagers now and for me, every age has had its joys and its challenges. But it's easier to appreciate the joys and deal with the challenges when your own resilience is good. And mine has never been lower than when they were little and not sleeping - and being ill too must have worn yours down to almost nothing. I hope you've had some rest and respite this weekend.

Hi @dotty2 thanks for your reply. Cats are weird creatures aren’t they? Mine mostly looks pretty but sometimes she’s strange too

@TopOfTheCliff yes I’d wondered about diabetes too. Last night I was so distraught I was just pacing around my apartment, I hadn’t eaten all day and couldn’t settle myself. I ended up phoning the Samaritans. They were brilliant, I only had about a 15 minute phone call and they just made me feel so much better. It’s hard going through this anxiety when you’re single. I have amazing friends but I don’t want to burden them.
I hope your wound continues to heal and you continue to feel better

I blooming woke up and 7 and fell back to sleep. I was supposed to be meeting my student niece in Covent Garden but I can’t be bothered. Looks like the local Nando’s then. I’ve not slept all week so it must’ve caught up with me. I’m feeling it now though. I’m quite down. I keep
wondering if it’s working. Then my mum rings me and tells me to stop the sugar and just eat greens 😮

Id love to eat more vegetables, but the state of finding them right now! Ah well, frozen peas with dinner tonight I think :)

@Mycatispretty if its any consolation, a BC spread to something like the bladder or anything soft that isnt the liver/lungs is not very usual, or at least not for IDC (ILC perhaps). If its a second primary well, not much you can do about it except get it dealt with. I really hate that 'one symptom per 8 minute meeting' - that delayed my own diagnosis a good 5 months because guess what! sometimes symptoms are related! (sorry to be facetious but I hate to see another lady subjected to the same bs)

@EachandEveryone I’m sorry you are having a down day. It’s hard to keep plodding onward. I share your concern about not knowing whether the treatment is working. I’ve got to decide whether to have another treatment that hasn’t got much evidence that it works when I don’t know whether I need it and there is no way of knowing whether it has been effective. It all seems like a stab in the dark with horrible side effects. I am feeling down today too. I’m so battered and broken and overweight but I can’t start doing anything to make things better until my wounds heal. Even then I’m not going to recover for months and there is every chance I’ll get more cancer to deal with.
What to do when you feel down? I find achieving small goals helps. I put on some laundry, water the house plants, order some online food shopping. At least I feel useful. There is a weird Arctic Drama on Radio 4 which is distracting me. Grim but compelling.
Sending love to all who need it
Top x

@HerbalRefreshment thanks for the reassurance and sympathy re “ one symptom only GP consultation.
@EachandEveryone @TopOfTheCliff I’m sorry you’re feeling so crap. Love to everyone else posting on here. You really don’t understand the shit storm that a diagnosis of cancer causes until you experience it yourself