Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

I’m at my place of work in a queue for bloods. Just saw the haemotologist who said it’s deffo cancer just by examining me for ten seconds. He said not to worry there’s plenty of treatment. He thinks lymphoma but wouldn’t confirm. Christ I’m now hoping it is and nothing worse I feel bloody fine oh god how am I going to tell my mother?! Do I tell her now before the biopsy or wait til I know what I’m dealing with?

@AGreatUsername I have back pain since starting chemo which I blame on putting on weight and also the filgrastim injections which make the bone marrow swell and hurt. Walking and washing up makes it hurt more.

@EachandEveryone sorry to hear your news. I found it helped to wait until I knew what my treatment plan was before telling my family. I still had a tiny hope it was all a terrible mistake too, and I didn’t want to upset them for a false alarm. It’s hard to be the bearer of bad news.

I’ve got my first dose of paclitaxel today. I feel sick already and I haven’t left home. Ugh!
Sending best wishes to all
Top x

Good luck for today @TopOfTheCliff - hope it's not as bad as you fear.

And to @EachandEveryone - step by step was the best way forward for me. I told people when it suited me to tell them, ie. when I felt strong enough. Fingers crossed there is a clear route forwards for you.

Good luck today Top. I hope it goes well for you.

Yes, good luck, Top and I hope the new drug is kind to you and murderous to your cancer cells.

@EachandEveryone - sorry to hear your news. I don't know if it's any help, but I was absolutely dreading telling my Dad about my cancer as it's not all that long since my Mum died of cancer and he is quite emotionally fragile. I talked to my Dsis first about how best to approach it, and she offered to tell him for me. In the end, I did it myself and it wasn't as bad as I feared. He's been supportive - but I do find phoning him a big emotional burden and have to psych myself up each time. I think that's a hard thing about having cancer - feeling responsible for others' emotions.

On a more practical note, I am starting chemo this week and not going to use the cold cap. I have been buying hats and headcoverings, but I have an unusually big head and also wear glasses. I like the hats more (the headscarves make me feel like I'm in the Handmaid's Tale) - but most of them feel like they'd be too tight to be comfortable for long. Any recommendations?

I just cant get my head around the fact that i never even took any clothes off and he knew by touching it for seconds. My flatmate wont discuss it. Said hes worked through two years of covid on the covid wards he doesnt want to know about any sickness at home and that I havent got anything wrong with me. I must admit I feel that way as well, I cant stop eating I feel bloody fine.

Hello! I just wanted to (hopefully) give you some good news. I suffered terribly all my life with PMS, had severe PND after DD1 was born, then had severe anxiety/low mood during peri menopause. Safe to say, hormones and I are not friends and I'm ridiculously sensitive to any hormonal fluctuations.

In peri menopause I ended up in such a dark place that I was referred to the Crisis Team (lovely, but no help). The only thing which cured me was seeing a consultant gynaecologist who prescribed high dose estrogen HRT and I was fully recovered in a matter of weeks.

Fast forward 4 years and I was diagnosed with early breast cancer, so had to stop HRT. The BC scared me but not nearly as much as going back to that dark place. I assumed that stopping all HRT and taking Tamoxifen would be horrendous for my mental health.

Well that was nearly 3 years ago, and my mental health has been absolutely fine.

Good luck @TopOfTheCliff ... How many Pax are you supposed to have?

I had 17 & it didn't get bad until about number 10 : )

@dotty2 I have bought these. The £3.99 ones are the ones I wear daily, they’re comfy and light. Weirdly the blue I bought was bigger than the black!

The patterned ones were more expensive, but they’re lovely and silk lined. They were a bit too big for me so I haven’t actually worn them, if you would make use of them I’m more than happy to post them on to you. I have the pattern pictured and also a black with pink/green tea roses on.

@dotty2 I have a big head but once your hair falls out you find the hat that was too small now fits nicely. I wear lots of beanies and bobble hats.

@mowly77 because I am on the dose dense regime it’s just four big doses fortnightly so it will be over in eight weeks. Mixed blessing! I don’t get a chance to recover but nor does the tumour.

@EachandEveryone your flatmate sounds burned out. You have been told you can’t expect any support or sympathy from him. Some people are like that unfortunately and you will need to look elsewhere for help. Do you have other family or friends who are better able to help? You will need them if the diagnosis is right.

Getting packed up now to go to the Unit. I’m trying the cold gloves and socks today.

Top x

Call with the oncologist today before chemo 5. My CA125 levels have gone up again. They’re over 500 again. She’s not overly concerned as I’ve had a clear PET and CT in august and September but I am so so stressed. Just go down you bastard.

She did say it could be chemo related, or I may be naturally high, or worst case is microscopic cancer remaining but she’d hope the chemo would be killing that. I have 2 more chemo sessions to go and will then go onto a hormone inhibitor and have another scan.

I am just so bloody fed up of CA125. Why won’t it come down. Why is it yo-yoing around like this and not behaving. I’m really hoping it’s chemo related but even in the OC Facebook groups no one seems to have a consistently high level. It is stressing me out so much I could cry.

Thank you for the hat tips. I'm not convinced I will suit a turban, but I have one on order, so I might take you up on that if I like it when it arrives - thank you @AGreatUsername and I'm sorry to hear about your CA125 levels, and see why that must be a worry. No helpful thoughts, really - but my sympathies.

Hi all, looks like there have been a few ups and downs since I last posted. Well I had the mastectomy last week and am slowly recovering from that before the chemo starts. Need to get the port put in first which I'm not looking forward to, I did ask if they could put it in while I was under for the mastectomy but was told that wasn't doable.

Welcome to the new people, sorry that you have had to join x

Glad to hear that you're on the mend from surgery fudgecat - hope you'll feel less tender each day!

Shame they couldn't do the port as part of the op, but I have to say that all of the stuff I've dreaded (wuss that I am) hasn't been nearly as bad as my imagination. I hope it's the same for you, when the time comes.

Wishing everyone a gentle day.

Hello @fudgecat - hope your recovery continues smoothly and the port isn't too grim. How did you get on with your new chemo regime @TopOfTheCliff ? Sending best wishes to everyone - I like the thought of a 'gentle day', @ajandjjmum - what a nice turn of phrase.

Hi @dotty2 It was okay. I checked in at 3pm to find they had wanted me to go earlier but were too busy to call me! My infusion was three hours long plus all the extras so by the time it was set up we were looking at a 7.30pm finish. Weird as it was the head nurse who booked it.
It all went well. The cold gloves and socks were comfortable but warmed up after a couple of hours. I will take some picnic bag freezer blocks to swap halfway next time. Also I couldn’t read or do puzzles or use my phone with the gloves on. I drank some tea through a straw though, and mostly just meditated which was nice.
I am so happy to be on the homeward run now. Just three doses left and it will be over. For now!?! Nothing is certain any more.
More gentle vibes to all
Top

Oh and @fudgecat I had my port fitted on the day of my first chemo as a day case. They took me into theatre where there were big X-ray machines and the radiologist inserted it under local. While I was scad it was very interesting and they were kind and competent. I stayed two hours on the post up unit until they were happy then checked in to the chemo ward and had my treatment. It’s brilliant! After ten days of healing I was able to bath and go to the gym and cycle without any problems. Better than the PICC I had last time.

I do the ice slippers and then swap to picnic blocks when they melt, it's worked well for me @TopOfTheCliff with the three-hour paclitaxel and carboplatin. My hands have been okay, not being able to do anything might have driven me mad, I can't get headphones in because of the cold cap.

@AGreatUsername I'm really sorry to hear about your CA125 levels, I sometimes wish I didn't know the numbers but then I would still be driving myself insane with the worry. I totally get that you just want it to just go down. I've also read that chemo can make it go up so really hoping it's that. It's all the second guessing which is so hard. Do you have the CA125 each time prior to your chemo?

@Fantasea I do. I have asked the last few times to know, it jumped up after chemo one, came down after chemo two (which had no taxol based drug) and has then plateaued and risen after that. I think it may be the taxol possibly? It had dropped by 1/3 between surgery and chemo 1 but has been really unpredictable since then. It’s just such a stress factor for me. I just want to be normal. Even on the Facebook OC support groups no one seems to have had this happen. I’m very reactive, my reactions on the pax were huge and body-wide so I’m hoping it’s just that.

Biopsy is Friday. Guided into the groin. Does anyone know what it feels like afterwards will I beable to go back to work the next day? (Nurse)

@EachandEveryone I've only had a biopsy of the breast bit was fairly sore the following day, maybe just wait and see how you feel once it's done.
@TopOfTheCliff that's good to hear you didn't find it to bad, I'm sure it'll be worth it in the long run. Do they numb the area before the chemo gets plugged in?

@EachandEveryone sorry to see your update. My boob was quite sore and bruised after being biopsied. I have no idea how the groin area would be. You may be better not working the next day, would be different with an office job.
I dreaded telling my parents but did tell them after I'd been to the breast clinic and it seemed likely it was cancer. I felt it kind of prepared them. Bloody awful having to do it.

After avoiding it for 2 and a half years, including last Christmas time when DP and DD had it, I've got Covid. Was supposed to be travelling for a funeral later in the week so not going now.

I caught it in the Summer it was horrible for about 48 hours it was all gastric with me.

i told my mum and sister both told me not to mention it again or to tell anyone else 🤔. I thought it was now acknowledged that its good to talk? Honest
they are two peas in a pod.

That's not very helpful of your mum and sister! Some people say the most ridiculous things especially when you really need support.
This is a great place for support as everyone can empathise even though we all have/had different cancers and different treatment plans.