Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

Had a bit of a wobble earlier, even though treatment is over and it's now the waiting game for my scan I just feel empty inside, like I don't know how to move on and start life again. I was going to start tomorrow by doing one thing on my list at a time to try and get back into a routine but all I feel like doing is staying in my bed and feeling sorry for myself.

Even the thought of going outside and being around people now scares me.

@catmomof3 from the little I’ve read, this is normal. You’ve been in survive mode for so long that now you will be starting to process things more. Be kind to yourself and take it steady.

fwiw I’m still waiting on results and treatment plan but my own work (own business) is in disarray. I’ve had more time off due to very close bereavement. I went to my office today to prep for a client I’m seeing tomorrow and felt a glimmer of myself again. I think we can lose who we are through this process and have to rebuild ourselves.

@dancingwhilstfacingthemusic I'm also still in pain from radiotherapy and brachy which doesn't help and I know laying in bed can make it worse so I really need to make an effort to get moving around a bit more. It's just hard when I miss my old self.

@catmomof3 do a little if you can.

I have a word with myself sometimes in the style of pippin and auntie Mabel “come along pippin, this won’t do”. Sometimes you have to put yourself to bed and say that tomorrow should be a better day. Small steps. We don’t have to do the big walk but a short few ups and down of a path across a day to get started. You’ll know for yourself what is a small thing you can do.

This situation is all so crap. We’ve dealt with a huge amount already. It does sound as if getting moving at least a little will help. 💐

Hello everyone, I’m not sure if I can post in here as my cancer is slow growing and I’m not needing treatment yet.

I work for the NHS in a stressful job and every Sunday I have the horrible fear of starting back to work on the Monday. Would I be stupid to leave the NHS knowing the sick leave policy is probably one of the better ones out there? I’m a single parent so I am responsible for paying all bills so this worries me greatly. I don’t even know if any other companies would take me on because of my diagnosis.

I am starting chemo soon for breast cancer. My anxiety has got me convinced that a lump on my leg is skin cancer. I really don’t think it is but I think I’m going to book a gp appt tomorrow because I need someone medical to tell me it’s nothing. I feel really silly but it’s been on and off for a few weeks now so I’m hoping being told it’s fine will work.

@Aspenandbirch i can’t speak to other sick policies but why would any employer need to know about your health pre hiring? Surely that’s private unless you are asking for reasonable adjustments?

The Civil Service has a very good sick leave policy, maybe take a look at their vacancies when you are ready.

Thanks Breakfast That's useful to know, hope feeling comes back, or if not I think you do get used to it. I just have it under my arm though my arms are fairly numb as well after chemo, sometimes that's good as I don't feel any pain there but it does feel if my stomach goes as well I will be all numb. Online it seems to say when I checked should be for a year.

Aspen Welcome and of course you can post. I would second the civil service being excellent for leave when ill and not discriminating. Some jobs you may not need to disclose. When I joined the civil service I had a medical but was a while back. I had 3 cancers two years ago and just offered a very good job and they knew about it and I have not worked for a few years due to cancer / SN child. I applied for 2 jobs and got the second one which was a much better job than the first one and much better paid. Also used to work in finance and those jobs generally came with unlimited private medical insurance and good sick leave but were more pressured. Did wish I had still been in one of those when I got cancer for the private medical insurance which also covered pre-conditions and cancer though it mainly meant you got a nice room and good food and drink.

There is a recovery thread in general health called The Great Recovery run by Top who is in the Canadian Rockies at the moment which supports people through recovery when they feel ready to join and if they want to join. It is mostly a optimistic thread (Top is a very optimistic person, I was a moaner and doom merchant all through treatment but now mainly an optimism convert, well I am now mainly a la-la-la cancer what cancer denier now and that helps me not think about reoccurrence and enjoy the now) about rebuilding our lives and discusses things like exercise, food, holidays, work, not working, children, parents and general chat. It does mention any medical tests we go through as well. The first few months at the end of treatment if you've had some of the more brutal treatments the side effects can go on before they hopefully get better. And recovery at first can be slow and rollercoaster like but just keep building up and you should find it easier as time goes on and fitness build. Its about finding a new normal in the recovery phase and trying to enjoy recovery as long as it lasts.

And in the NHS on its best form I got a letter from them today via e-mail saying we look forward to seeing you on 13th August for your operation, typed on 14th and sent on 19th, was cancelled on 13th. 😂

Haha I’ve had a few instances similar to that!

why does it take them so long to “post” electronic letters?? I get why they aren’t always typed same day but there is always a big gap between sent and recieved for me despite being electronic!

My best one was when I received two letters same day one saying a new appointment has been made for you on x date. Then second saying we've had to cancel your appointment on x date (identical). So thought meant no appointment and phoned, apparently the cancellation letter shouldn't have been sent and it was going ahead. Good job I checked.

And I also have a letter about why they cancelled my surgery in error with a recommendation that they don't do first checks on things at 7pm the night before a 7am all day operation as no regular doctors will be around who know about these things and they will just get oncall ones who it said in this case read results incorrectly and cancelled which apparently is safety first. 🤔

Hi everyone, I usually just lurk occasionally but thought I'd post an update. I have posted on previous threads but under a different name.
I have/had stage 3 ILC/IDC mixed, with 3 cancerous lymph nodes but a total of 28 lymph nodes removed and tested positive for cancer. Only 3 were enlarged and showed up on any scans so I think the rest counts as micromets. Everyone is always shocked about the number. At the time I was convinced it would end up being stage 4. We spent a good couple of months in a state acute fear and anxiety, while we waited for the PET scan and surgery results. It was horrendous.
I had a lumpectomy in January, chemo EC and paclitaxel through the spring and I finished radiotherapy on the 2nd of August.
I now have 10 years of hormone therapy injections, plus 2 years of exemestane and abemaclicib.
I started the abemaclicib on Saturday morning and have already had an upset stomach, but I took the medication given for side effects and it's cleared it up straight away (I will say I'd had a large piece of cheesecake right before and I'm not good with a lot of dairy anyway so I'm going to monitor my food and I wouldn't be surprised if I have triggers). I'm stiff when I wake up and if I'm sat down for too long but walking and exercise helps a lot.
I don't like to linger on cancer threads as I'm still trying to rebuild my mental health- it was low before my diagnosis and I think I was really quite ill so I'm building up from the very bottom- I find reading about it again can make me feel quite anxious and upset. Sometimes it's hard to remember we're all different and all on individual journeys. You read the "horror stories" and think it will happen to you but there's so much more middle ground, especially with the treatment now.
I also want to go back to "normal" life; now my treatment is finished it's like a huge weight has lifted, and although I still have worries about recurrence I put a lot of trust in the doctors who have planned my treatment. My oncologist kept saying "I plan to treat you, cure you, and have you walk away and never need to come back" and that has kept me going.

Wow silence. Thank you so much for that post. You were so good to come on here and share that. I am 5 weeks post surgery after my mastectomy and waiting for my oncology appointment. I had my results back which showed mine as mixed ILC/IDC. Originally told IDC but now mixed. When Lobular was mentioned at the results appointment and I was shocked it was as though I should have already known. Half of my lymph nodes cancerous so I too will need chemo, radio and HT. Plus my letter says abemaclicib/olaparib dependent on my genetic blood test. Everytime I go to an appointment or have a test.. I seem to hope for the best.. and come out worse. Try not to be down about stuff but I have been to next level physio today as I now have cording from lymph node removal.
I can totally understand how you want to put it behind you and move on. I am the organiser at home and in my life in general and my job is very time critical, organised recording of stuff etc.. so I struggle waiting and worry fills the gaps. Posts like yours give me hope to see a glimpse of the other side. Thankyou for sharing.. good luck to you now. Onwards and upwards definitely! and what a nice oncologist.. I hope (haha) I get someone even a little bit like that.

Can anyone explain to me what might happen at my appointment today please.

I had a mammogram, ultrasound and biobsies taken ten days ago followed by a short meeting with my consultant to tell me he's pretty sure it's cancer.

So today I'm going to find out results of the biopsies.

Will we discuss a way forward at this appointment and will I have other tests done today.

It's honestly been such a whirlwind, I've never experienced brain fog as much as I have the past two weeks.

Feel like Marie Antoinette going to the gallows

Obviously not to the gallows but the guillotine

When I had my results appointment they told me the type, stage and grade. I met the surgeon who explained my lumpectomy surgery and I was given a date. I was told I'd need chemo and radiotherapy. Met my breast care nurse.
Obviously things can change at surgery but I came out feeling a lot better having a plan and knowing what we were dealing with. Everyone was very reassuring and kind and I got to ask any questions that were on my mind.

Drive At my hospital they confirmed it was cancer, tried to give me 10,000 leaflets, told me the type of cancer, the size, the HER2 result, the hormone result and also then referred me for more tests to see if spread round the body. This is often not done and often you just get a first stage of treatment plan, often surgery but certain results it can be chemo first. A lot of people don't need chemo so hopefully you will escape that. The rest of treatment plan is normally given after surgery. They may start discussing different surgery options like mastectomy, lumpectomy, immediate reconstruction or delayed. Take a notebook and pen or something to type on as it tends to be lots of technical information and quite overwhelming. The further test I had were a CT of body from neck to waist then a further CT of adrenals as issue found there. But this was as I had hip pain, often no further tests are done though if its lobular like mine they do breast MRIs as well. Tests tend to be quite quick but then they go via MDT again so whole thing was a few weeks for me. I would prepare for it being cancer if they've said they think it is sadly but soon you will be getting it treated and at least that feels a bit better.

@somewhereonthe517 I definitely felt like that when they discovered the lymph nodes. But once I started the chemo it was, as my lovely oncologist said "all up from here" as you say too! The first bit is the traumatic bit, once you get started you realise how quickly they do want you through the treatment, out and away to carry on with life. Sometimes I have to stop and remember everything I've been through in such a short space of time.
At the moment I have the scar from my port and my left side looks different, but apart from that it's like a weird dream. My hair is growing back, I already have eyebrows and eyelashes and it's wonderful feeling like I'm part of life again. I remember reading people's stories from the other side, once they'd finished treatment, and looking forward to being in the same place. Now I hope that I can pop back occasionally to reassure others.
If you do want to talk further you're more than welcome to drop me a PM 🙂

Thankyou for your replies.
At the moment I feel as if I've been parachuted into a foreign land where I don't speak the language.

Unfortunately I have some 'irregularities' in my lymph nodes too so I'm not expecting a quick fix.

I've a lot to learn in the coming days, weeks & years.

Just wish people around me would stop saying 'it'll be ok' 😡

@silencebythelakeside Thank you again for this! I've actually screen shotted your post to save it (I have a few of @penguinsas! and others) as I find this page and people who have actually been through it the most helpful place. My family on one side have been amazing the other including my mum have pretty much fell apart (not helpful!!)
When I told my mum I needed chemo she bellowed "oh sh*t" down the phone!
@Driveinmecrazy. People here told me the wait was the hardest part and of course they were absolutely right. I also had alot of extra tests before my surgery which took time but feels like along time ago now. Be kind to yourself it's okay to be floored by it. I was/am.

OMG drive I am so glad you posted, as I am wondering the same. I had mammogram, ultrasound, and biopsy last week, when they told me they were pretty sure it was cancer. I have my results tomorrow, and don't know what to expect. So I guess yours are today? If you want to say how it went and what happened, I'd be glad to know, but of course you might not feel like it/it might not be helpful - I don't know how I will feel after my appointment tomorrow!

From last week's meeting I currently 'know' that it is 3cm, and that there is another potential tiny one (same breast). Ultrasound didn't find cancer in my lymph nodes, but apparently they are big which ultrasounder wasn't worried about but my googling has made me terrified of.

So much still to find out - so many uncertainties. And like a pp I am afraid of getting my hopes up - I was perfectly sure that the clinic was unnecessarily investigating a cyst last week - and then they are dashed, so am half-hopeful and half-expecting-tragedy tomorrow.

I also have a new worry to add to the pile. I thought with this being probably breast cancer, i should also worry more about my random through the month vaginal bleeding, so now have a blood test and plans to sort that out - and I guess the aim is also to eliminate cancer from there. What if I have that as well?! Though in my calmer moments I remind myself that I KNOW I have fibroids, and they have been ultrasounded before several years ago, and I had the random bleeding back then too. But I am also worrying about if the breast cancer means I need to take tamoxifen (or whatever it is called) then this will make my fibroids worse/give me uterine cancer. If I have to have a hysterectomy, then I will lose all my hormones, including testoterone, and maybe turn into a different sort of person - maybe a sad grumpy person who never wants to have sex again and can't do my job? And that's if I survive!

Once I start pouring it out, I see that the inside of my mind is not a very calm place!

Sorry I know I am not being helpful to others. I hope that I will come through this and be able to offer support. Right now, I'm just a bit of a mess I think!

Breast I had loads of bleeding from everywhere and it does need checking out but all they found was fibroids. Also on Tamoxifen and uterine cancer risk its after 5 years they are concerned and there's other meds can switch on to. Though mention it at your appointment, they might be able to speed things up. The one good thing about chemo is it stopped all the bleeding.

Penguinsa thank you - very kind of you to reply, and that is very helpful. I think it's because I my last appointment (for the breast stuff) was bad news, I now think that all medical appointments will be bad news. Kind of stupid!
I might change my username - not sure this one is very calming! will see how I feel after tomorrow's appointment.

Sorry just another question. When would they biopsy your lymph nodes? Do they do this as part of surgery, or might this even happen at tomorrow's appointment?
Or is it the case that if the ultrasound does not find a problem with lymph nodes that they do not need to be biopsied? (Clutching at straws here).