Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

Had phone call from plastic surgeon’s secretary. Appointment on Wednesday at 6pm.

@MrsPnut sorry to see your amazingness being so sorely (literally) tested. Can't be doing with the Olympics myself. My default sick viewing is back to back musicals.

@KitBot did you get any brain fog from radiotherapy? It had recovered from chemo but my recall is getting sludgey again.

@Acinonyx2 I had my chemo and radiotherapy concurrently so I never knew which was making me stupid. It was like having a lobotomy. I'd say I'm still not as sharp as I used to be. My biggest issue is remembering words. The knowledge is still there but I struggle getting it out sometimes.

Morning lovelies

Have been busy with DD1's 18th Birthday, we had a great day in Meadowhall. Been so tired since.

Welcome to new ladies. Here to listen. 💐

Will have a good catch up later, my dad is coming again to carry on building my new mini greenhouse.

Had a call from my BC nurse and all 6 lymph nodes were clear. I had a 95% chemo success rate and the tumour shrunk to 4mm and was downgraded to a grade 2 from 3. I'm seeing the oncologist tomorrow to discuss radiotherapy. The BC nurse emailed my holiday dates so hoping radiotherapy will be after that.

Much love

HC x

Greetings to all old and new. I am back from my salty expedition damp and cheerful. I went off on my own for a few days and had a lovely adventure. @Acinonyx2 although my brain works I am less coordinated and keep doing dumb things. At least even more dumb things than usual! But I didn’t fall overboard this week.

@HumphreysCorner that sounds fantastic news. No lymph node spread and an almost vanished tumour! The radiotherapy is just a mopping up exercise now. Congratulations

@MrsPnut I’m thinking of you enduring and am sending you positive waves.

I am setting off home soon to do laundry and buy healthy food before the next adventure. Herceptin 15/18 is on Saturday. The end is in sight.
Regards to all
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@MrsPnut just to say I've been thinking of you today. I hope you are getting a little relief, very gentle unMumsnetty hugs and cheeky puppy licks from little KitDog

Thank you, much better today after yesterday’s morphine haze. I slept a lot better last night and today I have a small corner of my bed that I have managed to steal from our doggos.

I willing accept hugs and puppy licks.

@MrsPnut Glad to hear that you get to see someone soon

I called the hospital this morning and after initially being told that the gynae oncology clinic was fully booked for the next 3 weeks (!), I managed to wrangle an appointment next week. It's only 15 minutes - is that normal for an initial appointment?

I forgot to ask if DH can come with me though! Hopefully the letter will say when it arrives.

@Hopeislost my first appointment was quite long but very disorganised. I'd already had my staging MRI by that point as I started off my diagnosis privately. The appointment with the consultant involved an internal exam, meeting the head chemo and radio nurses, meeting the trial nurse (I signed up for the interlace trial and drew the control arm) and consenting to chemorads. The oncology registrar took most of the meeting with the consultant just doing the internal. Oh, I had some blood work done too.
I had my CT planing scan the following day and my PET/CT the following week. I started treatment about 10days after the PET/CT.
It was exactly 3 calendar months from day of diagnosis to end of treatment. I was stage 2b cervical cancer.

@Hopeislost My first gynae oncology appointment was an 15 minute appointment with an internal examination (and she looked at my boobs but I have a cancer there too). I also signed my consent form.

She then collected all my scans and discussed my case at MDT and I had my chemo and radiotherapy planning appointments the following week. I started treatment a week after that but I had private treatment.

Thanks @KitBot - 3 months sounds like an age at the moment. It's been a week since they told me (over the phone) and it feels like it's been forever.

@MrsPnut That must've been a quick internal exam! I was hoping this appointment would be to discuss my treatment plan but it sounds like that might not happen.

I need a kick up the bum. IDespite having had a debulking op, which should have made me more positive after being told two years ago I was inoperable, I still cant drag myself out of a black hole. Waiting to go on a PARP which I know doesnt work for everyone, and very fearful for the future. Im on the Ovacome forum which has loads of useful information but also ofcourse very sad outcomes. I dont want to stop using it though as Ive actually found more information there from other ladies experiences than I would have come by otherwise.

Please deliver sharp kicks up bum, no 4" heels though

@thereisonlyoneofme I don't think you need a kick up the bum. I think what you are feeling is totally justified. I was there a few weeks ago. I couldn't stop crying and all I could think of was dying.
I'll be honest I don't have a magic cure. I've thrown myself into work as a distraction and we've just added a 4th (!) dog to the menagerie. I'm trying for "fuck it, do what you want" as a mental attitude. It works. Sometimes.

thereosonlyoneofme, sorry you're feeling down. I tend to stay away from the cancer forums as they give me the fear. I agree there can be I useful stuff but I use them mindfully and minimally or I can quickly spiral.

What helps lift my mood are survivor stories. I live on these when low and if I've had to pop onto the oesophageal cancer forum I make sure I balance it out by going to the Chrisbeatcancer website. I love listening to survivor stories like these they restore my faith. I spend all day listening to them if needed.

The whole thing is a massive mental balancing act which I imagine it gets pretty tiring after dealing with it for a long time but remember you have done so well. It's all crap & scary and natural to feel fearful and low. The uncertainty is extremely difficult to live with.

I squeeze in as many positive emotions that I can. Funny TV, funny friends, doing things that bring joy. I've created a mood board of all the positive things in my life and things I want in the future and hung it in the kitchen. I also have something similar by my bed so it's the first thing I see when I wake up.

Are you feeling physically well at the moment? I think that makes a difference. Much hard to feel mentally ok if you feel like shit.

@MrsPnut How did your appointment go? (think it was yesterday) I've been applying my radiotherapy cream three times a day this week to my mastectomy area & each time I'm thinking of your chest - that sounds weird but you know what I mean

@HauntedDishcloth My appointment went quite well, he didn’t think surgery was needed just yet, which is good because it would be a big skin graft. I’m seeing a dermatologist today to see if they have any ideas. We think it has shrunk very slightly on one side but it is still bigger than my hand so it is a small win.
I have got my GP surgery to prescribe dressings just in case it does blister and break down because you know it is going to happen over a weekend.

@Gilmoregirl

Have you had your results yet? Finally, after a v long 6 weeks, I had mine in a telephone review today. All clear! Next review in a year's time.

I don't want to jinx it, but I think I have been v lucky. Surgery in the nick of time.The path results showed that my tumour had developed more than expected. T4 EMVI positive. They'd previously thought it was T2 EMVI neg. It's now described as pT3a. But forgot to ask why and what it means. I also only managed 4 out of 6 oral chemo, because of Covid.

Still keeping fingers slightly crossed, but no excuse now to put off various decisions that were previously on hold. Starting with sorting out my teeth and getting someone in to decorate kitchen etc.

Do hope you've had positive news, too.

What was the dermatologist's verdict @MrsPnut? Good idea to get prepared with dressings.

I finished my 5-day radiotherapy today so having a can of wine to mark another treatment done with - woo hoo Also discovered another small win: driving with the car windows open with so little hair means I don't get hair blowing in my eyes and mouth. But this has been offset by my nails growing so the bit damaged by chemo has got to the top and they're just tearing off. And I'm paranoid when I take my socks off that a toenail will come off too

@thereisonlyoneofme Are you still feeling gloomy? Sending a virtual kick up the rear if you are!

@HumphreysCorner Glad you had good news on your results

Hope everyone can have some good times over the weekend regardless of what's going on with treatments, results, etc

@HauntedDishcloth I have many lotions and potions to put on my chest and another week of antibiotics just as a precaution. I’m due to see him again in 4 weeks.

Dear all - I'm aware I haven't posted for quite a while, and I realise that actually I want to keep away from the thread for now. I have felt guilty about being "absent", which is silly of course. I still do very much care about all of you, and I will almost certainly be back eventually!

For now, huge thanks for all the kindness and support I've had. As always I wish you all the very best with treatments, and the best possible outcomes.

Bridget take care of yourself and pop back whenever the time is right. Good luck with treatment and gardens and possible house moves. Thank you for all your support

Bridget - same sentiments as Kitbot's from me, too. Entirely understand.

@Bloodybridget totally understandable - take care of yourself while you focus on other things

@MrsPnut glad that there is some improvement and 🤞 that it continues.

@thereisonlyoneofme sending you hugs. I have times where I feel like that and sometimes its the surgical menopause and the lack of hormones, other times its just the whole shit situation. Be kind to yourself and find distractions to keep yourself busy. @quinin your post is really helpful thank you

@HumphreysCorner good news on the lymph nodes and @HauntedDishcloth well done getting through radio. I had a similar hair moment

here's to a good week for everyone x

Hello everyone, I've not posted for a few weeks although I have been keeping up with reading the thread.

Sending best wishes and positive thoughts to everyone, I'm glad to see that there have been some good news for many of you, in one form or another

I started on Docetaxel and Carboplatin last week (after 3 FEC treatments). I was so amazed at not being sick after treatment that I thought maybe these last 3 treatments would be OK. Apparently I was wrong, The lack of sickness/nausea is great but instead I ache from head to toe, my mouth feels gross and tastes worse with nothing seeming to help, I have some numbness in my fingers and toes, I'm exhausted and I have diarrhea.

Does anyone know how long I might feel like this? I'm hoping not until next treatment as I'm not sure I'll cope.

I had to have my mum over yesterday to help look after DS3, I felt so so useless. Older DS's are off with grandparents currently but will be back tonight. I have spent most of my chemo so far just trying to pull myself together and carry on, but it's getting harder and I feel like a failure having to rely on others to help care for the children.

Since starting treatment I have become fat/bloated, balding, incapable of keeping more than one thought in my head at once (and that's on a good day), exhausted and emotional.

I'd happily just be sedated until after chemo has finished, I feel a mess. I can't even care for my kids currently without help, I am utterly useless.

Neither use nor ornament as my Granny used to say!

I am right in the middle of throwing myself a pity party it seems, you all seem so strong on this thread, I'm in awe!

@NogbagTheBag sorry to hear you are struggling. What you describe sounds very familiar and will peak around day 7 or 8 and get better by day 10 hopefully. The knack seems to be to take it hour by hour on the bad days, and day by day to get through. Don’t look ahead or worry about the next round. Can you ring the BCN team to talk about medication? They always have good advice to reduce side effects. I learned to take all the drugs and not try to be brave. I almost gave up on round 4 but they talked me round again. You can do this! You are doing this for yourself but also for your kids so get help if you need it, there is no shame in that. I couldn’t even look after my house plants let alone children during chemotherapy. You should be proud of yourself because this is a bloody hard thing to get through.

@Bloodybridget enjoy your sabbatical. You deserve it!

I’m on holiday from physio and gym sessions so I can go away on my boat but the weather isn’t great. I’m going to catch up on the allotment instead. I’m feeling grateful for being well but I think the 15th Herceptin has made me feel very nauseated. Maybe I can lose some weight this week. Silver lining?

Regards to all. Fingers crossed for test results and minimal side effects
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