Cancer Support Thread 85 - Hoping for a positive 2023

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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.

Welcome to the newbies here, I am a newbie as well but I do lurk now and again. Still finding everything overwhelming. Please don't Google and if you are worried aways give your macmillian nurse a ring and then come rant on here. We will relate and understand.

@EachandEveryone that's good progress about the picc line. I am having mine put in next week. How was the process of insertion? I am very nervous about mine. I would have loved to continue using the cannula but my veins are now useless.

@chocolatesauceandicecream please go to get checked.

@thereisonlyoneofme how are you today? I have been thinking of you and I wondered whether you were able to access more support locally? Are there any local cancer charities where you are? Somewhere you could speak to somebody in person?

I hope it is is okay to post here again as I am just finding things too overwhelming. I had a chest X-ray done but I think I spoiled it as did not inhaled deep enough and now worried that they will miss if there are metastasis as I just found out it is important to breathe in deeply and I did not. I also breathed out earlier that was needed - I thought the tech said breathe out but I misunderstood them :( the results did come back as clear but I understand it cannot be very reliable. How stupid I am. As I have shortness of breath and little cough and did not know it was so important to really inflate the lungs. I feel like it was just another false hope now.

still waiting for my mri which is on Sunday but losing hope every day. I know that I am supposed to get distracted, but finding it so hard. And while I love my baby like no one before I find it hard both mentally and physically at the moment. Every time I see him smile I can’t help but thinking whether I will see him grow up, would he suffer without me... I just want to hide underneath the duvet until this uncertainty is over but I have no choice but to push. And pushing reminds me how unwell I am - head spinning when I walk about the house, breathing difficult even in simple tasks, muscle hurting from casual walking.

i am so so sorry to bother you all with that, I am not sure what I am looking for. I just want somebody to say to me that I am going to be okay and struggling to carry on at the moment

Hi everyone, another lurker and occasional poster. Like others have said I find this thread inspiring. Apart from my cancer diagnosis I have also been extremely ill with covid twice. My breast surgeon was looking through my scans in 2020 and he said you’re lucky to have survived covid because it attacked many organs in your body. My small bowel and kidneys were inflamed plus respiratory system. I have never really recovered from covid from March 2020 and then I was diagnosed and treated for breast cancer last year and then caught covid again and ended up in hospital. In hospital they referred me to long covid team although I didn’t really feel like I qualified for that diagnosis.
Yesterday the long covid team did video call to see how I’m doing and to my horror I burst into tears. I’m not a cryer. I thought I was ok but I’m obviously not. No one asks how I am anymore so the question threw me. Cancer and being ill with covid are a physical and psychological mindfuck. I feel like a completely different person than I was two years ago and I don’t trust my body

I’ve had two lovely bedside neighbours today. Honestly we were that busy chatting I never noticed anything happening. I also had a nice massage. I would’ve been happy just lying there in my own thoughts but both started chatting as they could probably tell I was a newbie.

do you go back to your same hospital for your weekly bloods? The nurse said it’s better as I have a picc line they can change the dressing at the same time. Otherwise it will mean getting bloods done at regular blood clinic and being pricked? It’s going to be a Buggar on public transport though. Or i might just suck it up and pay for taxis.

@EachandEveryone I sometimes went to the hospital for my bloods, but mostly went to my GP surgery, which was much closer to home and therefore more convenient. You need your bloods done two days before chemo though so if you’re having chemo on Monday or Tuesday, you will probably need to get bloods done at the hospital on the Saturday. That’s how it was for me anyway. And I didn’t have a picc line though…
Glad you had some nice people there to chat to, and a massage! Wow! All the nurses on my oncology unit were absolutely fab but never had any offers of a massage… best I got was 3 custard creams…

Oh. There was sandwiches yoghurts and biscuits I’ll be as fat as a fool soon

@EachandEveryone you will need to get the PICC flushed and dressed every week so you might as well get the bloods done at the same time. For showering you need a Limbo sleeve which the nurses might give you on prescription or you can buy one on Amazon. Over the PICC you can get pretty elastic sleeves online to hide the dressings. I had a fake tattoo. It will soon become routine. The fitting is easy @Makemineadecafplease they do it under local and it is worse in your head than in reality. Afterwards they do an XRay to check the position then it’s good to go.

@Anxiouslikenoneother Of course you will be fine! Once the diagnosis is clear they will have a plan to put things right. You can’t mess up an X-ray by breathing wrong. If you did they would just take it again. Metastases don’t disappear that easily! So you have now had a normal pelvic X-ray and a normal chest Xray which is great. You have to stay in the present and stop running ahead of yourself. I suspect you are a chronic worrier used to thinking the worst! It will make this whole journey much easier for you if you can stop, take a breath and enjoy what you have now! None of us know what the future holds which is just as well in my view.

My view currently is spectacular. We have arrived in Cornwall at our posh holiday house by the sea and I have a double bed to myself and magnificent river views. The kettle is on and I don’t have to do any cooking or cleaning! Bliss.
Love to all
Top x

Hi All
Just been for my pre op this afternoon. Not looking forward to it all, be glad to get the lump out though.
It's so hard. I'm struggling with it all tonight.

@Mycatispretty I saw that picture on a Twitter cancer account - it's very apt. I think pretty much anyone having had a cancer diagnosis will relate to it. That follow up threw you but it might just be a blip as it took you back into the maelstrom. Are you thinking of doing anything going forward to shore you up, counselling or a Macmillan course if any near you?

I've just started a Macmillan course of 6 personal trainer appointments to get me active again & access to a circuits class & "Breast Stretch" class. 2yrs since I started chemo.

Very jealous of you in Cornwall @TopOfTheCliff- enjoy your stay!

Did anyone here decline Tamoxifen? I’m awake with my snot-filled 9 month old and having panicky thoughts about it. I know you’re supposed to take this stuff one stage at a time and I have 3 x Paclitaxels and radio to get through first but I really, really don’t want to take Tamoxifen. I’ve heard nothing but bad things and I just want my life back.

I'm on Tamoxifen and first month had lots of aches pains felt nauseous. Second month different brand which I've stayed on since and just bit moody on them. I did Pax and radio before. The only thing is you do get a bit where chemo effects, radio and hormone therapy all seem to hit at once before it stabilises but it was only about a month of that. I will stay on Tamoxifen for 5 or 10 years. I would just try it and see how you go but it does take 4 weeks or so to settle and some people are better on different brands.

Have a lovely stay in Cornwall Top

@Silkierabbit its the effects on mood that worry me most as I have a history of anxiety/depression/disordered eating and had just managed to get all of it under control without meds when I got pregnant - then ended up with antenatal and postnatal depression, then this cancer diagnosis four months after giving birth. I don’t want to take MH meds again as they make me put on weight, which I understand is another potential side effect of tamoxifen and yet another reason I don’t want to take it. I just want my mind and body back, I’m sick and tired of looking and feeling like absolute shite and taking umpteen pills for this that and the other. Feeling very angry at the moment ☹️

I’ve now seen two separate oncologists regarding my chemo treatment. Both recommended separate courses. I was triple positive but stage 1; NHS Onco at local hospital recommends two separate chemo drugs + herceptin 12 every 3 weeks. Christie’s Onco recommends Paxclitaxel + Herceptin 12 weekly. It will be a ball ache organising weekly travel to Manchester, but the lower chemo dosage and quicker course very much appeals as I want to have my other boob & ovaries removed as soon as possible. Chemo starts next Thursday, so stocking up on chemo prep list and just purchased a lovely heated throw on Lakeland. Husband treated us last night both to a 30 (!) course 2 Michelin starred meal and room at Ynyshir in Wales. They sat us directly in the kitchen which was interesting. So many chefs in a tiny space. Likely my last night out in a while, each course was teeny tiny but had to give up at course nr 20, just too much food.. driving home now the weather is glorious and belly still full. Wishing you all the weekend you hope for xxx

@TopOfTheCliff you are right that I suffer from anxiety however I do have a real lump which has grown in the last two months and is about 7cm now. Whilst the X-ray was clear ultrasound confirmed it is not lipoma or cyst, they don’t know what it is. I have a crushing fatigue that does not get better with sleep / rest and now headache and dizziness for about three weeks. So every time I am trying to get distracted I feel so tired or dizzy (or feel my lump when I recline) so all those thoughts keep rushing back.

Afternoon…daily reader and sometime poster here. I hope the new people on the thread are managing ok during the anxious time before treatment starts, and I hope those currently undergoing treatment are finding positive days.

@incognitodorrito that sounds like an amazing pre chemo treat. Hopefully it will carry you through the tough times ahead.
I’m really interested in the different treatment plans given to you by the two oncologists. I’m also triple positive but later stage 2. The NHS oncologist has prescribed a 4 cycles of EC followed by 4 cycles of dox…something, starting Phesgo injections on the 5th round. I had my first round last week and it’s knocked me for six. I am very slight and thin anyway…my mum calls me a delicate little flower! But I’m struggling at the thought of 7 more rounds. I did see an oncologist privately who was more senior than my nhs one but he didn’t question the treatment plan. I was also trying to get an appointment with the royal marsden and an online appointment has now come through for this Thursday. I was in two minds whether to do it but reading your post has made me think there might be a more manageable way. Can I ask will you be having the chemo privately at christies? We looked into it but the local private oncologist didn’t recommend us paying as we go.

sorry if there are many typos in my message…I’m struggling to concentrate during this first dose of chemo fog!

@Whattodotomorrow the Onco at Christie’s recommended herceptin & taxol for my case as it hadn’t yet spread to the lymph nodes. She cited some research that had been done. The NHS Onco recommended a similar treatment plan to yours to ensure no reoccurrence and that I was young (45) and would be able to endure the treatment. After I mentioned to him that id had another opinion and would prefer taxol & herceptin only he said he would do it, but only with a letter from other onco and with warning that he didn’t think it would be as effective. I can’t actually remember what the NHS onco initially recommended, I think it was the TCH+P choice (so not as described in my earlier post, god knows what my memory will be like post chemo if this is the starting point!). If mine had spread to the lymph-nodes I would want everything thrown at it to be honest but chemo is a grim process for anyone to endure. They might be able to adjust your dosage if your struggling, I’ve also heard that they can reduce the amount of rounds you can have, another poster mentioned something similar a few weeks back. Xx

Sorry, missed your query; yes I’ll be going private. Luckily, have health insurance through work that covers this. My local NHS hospital would have been my first choice as it has a great reputation but they have a bit of a backlog which delayed my chemo start. I also want to have chemo on set week days to not disrupt work and my cancer nurse at Christie’s is easily contactable via mobile. However, at the end of the day I am having the exact same medicine administered that I could be getting locally but Christie’s can start a week earlier.

@HauntedDishcloth Ive had counselling by McMillan which I found helpful at the time. I’m slowly trying to build up my activities and I go for an hour walk everyday and yoga at home.
@WorryMcGee unfortunately I was unable to tolerate Tamoxifen due to nausea, fatigue and completely losing my appetite. I felt absolutely dreadful. Hopefully you’ll be fine. My sister and two of my friends all took it for 5 years with no problems

I was up all night with the steroids and Im famished all the time. That was only my first dose. I hope Zi do get my sleep back.

im on paclitaxel every week for three weeks and carboplatin on the first week. For three months. The woman next to me said shes on the same thing because its gone to her groin and its already stage four. Bloody hell she seemed fine it was me that nearly fainted if shes been told stage four cos its in the groin what does that make me if they cant find the primary? Not that I want to know because I feel bloody fine and stages have never been mentioned. It was her third treatment and she said her hair had started falling out that morning so im thinking i might be that way.

i hope you are all having a good weekend. Im just glad Ive started treatment. I did think about asking for a second opinion but my team work closely with UCLH so i think ill see how it goes.

Well done @EachandEveryone you sound as though the steroids are giving you a nice lift to get through round 1. Everybody’s treatment is different so comparing yourself to others rarely helps. You said your cancer type is treatable so hang on to that!

@WorryMcGee the stats on prevention of recurrence make it really worthwhile trying to take tamoxifen. You don’t need to start it straight away, you could wait till you are feeling stronger and over the side effects of the other treatment before you start but it’s really worthwhile. If you don’t get on with it there are other drugs. I’ve managed two years now although I switched from anastrozole to exemestane due to joints pains. I’ll go back on it after radiotherapy is over I guess. Three years to go!

@TopOfTheCliff if the risk of recurrence is reduced by 1%, I’m not sure 1% is worth terrible mental health, weight gain, joint pain, zero sex drive, thinning hair and all the rest of it. I’m only 37 and I’d like to think I have a strong marriage but I’m not sure it would survive all that (and why should it). What’s the point in that extra 1% if your life is miserable? But then I think I’ve got a daughter now and I should do as I’m told for her, regardless of how much it ruins my own life. I’m just so, so angry about it all.

I'm sending so many good thoughts and wishes to everyone. Lots of love to you all.

My DH has just been diagnosed with a blood cancer and they think it's stage 2 but it's not confirmed. He's currently away and has been diagnosed through work medical. He's registered to a GP in a part of the UK we moved away from a few months ago and I'm wondering whether it's worth approaching a hospital directly (we're now London based) or is that crazy?

I like the rule above not to Google. I'm finding that incredibly sanity saving right now. Still in a state of numbness and the hardest part is managing other people's reactions.

@WorryMcGee I felt similar to you. My odds of 5 year survival increased by 0.3% taking hormone blockers and my 15 year survival between 0.7-1%. I was determined to try the meds and I’m normally very compliant but I had zero quality of life because of the side effects. The fatigue I experienced on them was crippling and although I made myself walk for an hour every day that just about finished me off and then I just was asleep the rest of the day. The nausea meant I was unable to enjoy food. I derived no enjoyment from anything and I just wanted to curl up and not exist anymore. I’m really annoyed/ disappointed I am unable to take them but for me it wasn’t worth it. I can only assume I’m sensitive to hormone levels as I had raging pmt before the menopause and during both pregnancies I was hospitalised with Hyperemesis Gravidarum.
As I mentioned earlier, my sister tolerate tamoxifen and arimidex with zero complaints of any side effects but she also never felt the slightest wave of nausea during pregnancy and never experienced PMT. She used to say I was making my symptoms of PMT and Hyperemisis Gravidarum up!