Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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Can I just have a moan about how much I hate bloody Dexamethazone? I know some people love it but it leaves me a jittery, trembling, sleep deprived mess. Even on the lowest amount (agreed with my team) it hard going. I'm trying to comfort myself it's only for 3 days once per month. Rant over.

@HumphreysCorner I’m sorry things aren’t good. Sending hugs

Yay @MrsPnut for finishing chemotherapy !

@grateful3 I do a bit of gentle hyperventilating before a breath hold. It makes it easier to go on longer without a breath. I’m sure your team will find a solution.

I’ve been a bit emotional this week. After my 100k bike ride on Sunday I was crying with happiness at reaching my previous fitness level again. Then this morning in my third gym session of the week I got tearful when the teacher complimented me on progress. When I started after breast surgery I couldn’t sit up unaided and now I am doing press-ups. It seems like a bit of magic but I guess it is my reward for months of effort. I can’t imagine ever taking health for granted again.

Sending positive waves to all.
When you are going through hell keep going!

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Hello everyone

I've posted while only having read a few posts as otherwise I will lose my nerve.

I'm 49, menopausal and stressing. I'm utterly convinced one breast is markedly bigger than the other. I'm pretty sure it always was a little bigger but really not by much. Now it really is noticeable. Dh is adamant it is the same and I got him to measure me and said it was the same. I noticed this yesterday and it is the same today. I knocked it this morning and it was a little painful then I have had two periods of it being itchy.

I've got so much going in that I am convinced I have all sorts of infections but argh.

Thank you.

I hope everyone is doing as well as they can.

Hello I'm still here, one week post flap reconstruction. All went to plan, the pain and discomfort is subsiding, and the nurse was happy with the wound today. Seeing my consultant for a proper big check up in two weeks.

@JeanLannes while my surgery is nothing like yours, my BCN did advise me to take it steady with the exercises, and that most people experienced increased tightening after a week or more post-surgery (I was commenting on how straightforward they were). I'm not quite at that point this time but definitely found something was getting "tighter" in my armpit after a week or so after the first op, and lifting my arm got harder/more painful. Nobody has mentioned any physio around here, I have printed instructions .

Thank you for all your replies. Unfortunately I didn't get any radiotherapy treatment again yesterday. I tried a few times but they said the amount of breath they were expecting me to breathe in and hold was too much for me. They were going off my scores from my CT scan and they think maybe I took a very deep breath at CT scan but it's too hard for me to maintain. I can’t remember breathing very deeply! They said the majority of people would not be expected to breathe in so much. So I had another CT scan and they are doing a new plan for me. So I now need to wait to hear when my new radiotherapy plan will start. I have to say all the staff were fantastic and I’m so grateful for all their care.

@grateful3 that's good - hopefully the new plan will work out much better.

@SunshineCake1 if you are worried - talk to your gp.

@TopOfTheCliff I don't see a 100K bike ride in my future but I am actually a lot fitter than I was before I was diagnosed - due to all the walking and losing weight. I'm always selling walking to people.

I'm going to try a couple of weeks of steroids for my cough and see how it goes.

[quote Acinonyx2]@SunshineCake1 if you are worried - talk to your gp.[/quote]
I'm going to make a note and see if it lasts ninth next week as it was itchy again today. Not sure it is a commonly known symptom. Finding it disconcerting to see how much bigger it is than the other is even though dh disagrees.

Can I ask whether anyone who's had chemotherapy has experienced a kind of brain 'fuzz'? The biggest side effect I'm experiencing is a real inability to think, analyse or multi task in the way I normally would. I noticed when I was back at work after round 2 when my boss asked me something that normally I'd be very quick to have a response for, but I struggled to be able to answer his question at all.

It's worrying me for going back to work next week even though I'm otherwise physically fine. I manage a small team of technical experts and I need to be able to converse on their level as well as manage their sometimes challenging personalities. I'm wondering if I need to arrange an occupational health assessment to see whether I'm fit to do my job at the moment and manage my boss's expectations of what I'm capable of delivering, but it would be useful to know if this is a common side effect.

@SewingBees definitely, yes. After my main chemo, it was clear again after about 6 weeks - but some people find it goes on longer. At the risk of sounding like a broken record - exercise helps with this and I think that's what got me back to normal.

@Acinonyx2 thank you, it's good to know it's not just me experiencing this. I think I may have to just stop work and take the financial hit of going down to statutory sick pay, with a plan to go back in the new year when the chemo is done.

@Acinonyx2 thank you

@SewingBees I have been off sick since I started treatment and I don’t think I could have coped with working.
I am very fortunate that my employer has a specialist insurance to cover long term sickness.
My memory and processing have definitely deteriorated since chemo, I often can’t think of words when I should be on it.

@SewingBees I definitely have chemo brain, manifesting itself amongst other things as aphasia, which is where you can't bring the word to mind. I can still do cryptic crosswords, chess, etc as it's ok when focussing on a single specific thing but in general conversation I often just come to a standstill.

@MrsPnut thanks for the welcome and with respect to you lovely people, I hope its short as well.

I think I have till next Friday, before I can start chasing them, but it seems such a long way away and I am still not googling, I think I prefer the unknown compared to the horror stories I might get

Hi,m sorry me again. When I lent down I could feel a pulling in the same breast, both times. Told dh and he said to ring the doctor next week. We all know how impossible it is at the moment so don't want to waste time but should I? Happy to get reassurance from you guys all is okay, don't want to take an appointment from someone who needs it really.

My Nana had breast cancer but when she asked me to check her nipple was inverted so I knew it was probably cancer as a definite symptom.

@SunshineCake1 It does sound as though you need to see your GP and get a referral to your local breast clinic for mammogram and ultrasound, even if only to put your mind at rest. It seems that times vary for being seen and referred depending on where you live though, so don't delay in taking that first step. Good luck.

@MrsPnut @HauntedDishcloth Yes, struggling to find the word for something seems to happen to me too. I also find I have to concentrate to stay focused on one thing and not let my mind wander. I haven't been driving long distances because of this.

I just hope this isn't permanent, I've always been pin sharp and I'm really not enjoying this change.

@SunshineCake1 we can’t reassure you properly. You need to get a referral to put your mind at rest. Are you generally a worrier? Do you have health anxiety?

@SewingBees I am like a goldfish with short term memory loss since chemotherapy. I always have a bit of nominal dysphasia forgetting names and nouns but now I have to write everything down. Luckily DH is the same and we blunder cheerfully round the house looking for keys and forgetting what we were about to tell each other. It’s a relief I have been able to retire.

@JeanLannes and @NewlyDiagnosed I found the shoulder exercises easy to do at first but things got gradually stiffer and I had to work to keep the full range as things tightened up. It was worst about two months on from surgery as the scars contracted. Now I’m at 10 months I would say it is stable.

Yesterday I took DM shopping for clothes for the first time since 2019. What a hoot, she forgot her PIN so I ended up paying. We had a nice lunch out. Much hilarity!

Have a good weekend folks. May your side effects be minimal.
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So I saw my surgeon last night and he confirmed what @Acinonyx2 said - cording. They will get the physio to look at it next week. He also drained quite a lot of fluid off which has made it more comfortable. @TopOfTheCliff and @NewlyDiagnosed mine does seem harder to move than a week ago even though I am keeping up with my exercises. I hadn’t expected this.

I am very fortunate that I have had a complete pathological response to the treatment. He said the lumps he felt in my axilla were probably scarring. My results hadn’t been to MDT but he expects radiotherapy and then ongoing Phesgo until I’ve done 18 sessions.

I struggle to find words now and have to concentrate much more. I have a comms background and writing does not flow like it did. I hope it comes back.

@SunshineCake1 - please go and see the GP. They will be able to advise and put your mind at rest.

@grateful3 - I hope they get your new plan sorted soon.

Thanks @TopOfTheCliff for the explanation re: the exercises, I am definitely doing them even though right now they're not so hard. Not rejoining my yoga class quite yet though! However I have a nice teacher who completely includes all abilities so I can see this happening in the next few months.

Hope everyone has a good weekend...

No I'm not anxious or have health worry but I'm not a doctor so obviously don't know but we all know about cancer. While out walking the other breast was itching and it lasted longer than the other. I have emailed a nurse on the breast cancer care website so I'll see what they say. Thanks.

Haven't been on here for a while, but am back suffering the dreaded waiting game for results, and got so much support here 2 years ago.

I was diagnosed at age 48 in Oct 2019. Had 3 x EC followed by 3 x docetaxel plus herceptin and perjita, surgery (lumpectomy plus sentinel node clearance) and radiotherapy, with herceptin until Jan 2021. Paid for my symmetarisation operation in June 2021 as was told there was at least another 18 month wait on the NHS. Noticed a lump on this side a couple of weeks ago which coincided with my annual check up. Went for ultrasound on Thursday and, although the consultant thinks it's scar tissue, had 3 biopsies and a mammogram. Was in complete shock to be honest and now have to wait until 1st for results. I just can't believe this might all be starting again! I'm clinging on to the fact that last time, when I had the ultrasound they were 99% sure it was cancer (and it was) and this time they're pretty sure it's nothing - but I need to know and hate this waiting. Thank god for anti-anxiety medication!

SewingBees I also definitely had chemo brain, manifesting itself amongst other things as aphasia, which is where you can't bring the word to mind. My personal low point was saying to my husband "can you get me a can of coke from the machine that keeps things cold (fridge )".
I'm pleased to say that it's much improved! I got a new very senior job in March 2021 and was really worried how I would cope - being at work and being mentally stimulated really helped with recall although I do still struggle with fatigue (which makes the chemo fog worse), so have to try to pace myself. I also carry a notebook and pen everywhere I go at work!

Happy (and sad) to see many names I recognise. I've been following the threads but haven't posted for ages.

Hope everyone has a relaxing weekend.

@Zorgothslugofdoom you know they have to check these lumps and at least, most likely, afterwards you can stop worrying about it. I had a brain scan last month and it's quite worrying but now I don't worry about the headaches - so it was worth it for that.

@JeanLannes good news on the pathology. I also do some writing and that was tough with chemo brain. I was reworking a long piece at one point and could barely understand it - even though I had written it myself!

I don't think I'll have 100% recovery in my right arm but it's OK.

I'm taking steroids but still coughing a lot - I can't afford for this to get worse (and god forbid I catch anything on top) so I wonder what's going to happen going forward. My hopes are pinned on this drug and I'm not even half way through and already on a reduced dose.