Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join 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.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

Yes I might be able to get bloods done at the hospital, I'm supposed to be working on Tuesday morning and the consultant appointment is by telephone but if I need to go in then I can, it's just not knowing. I don't understand why the GP practice can't enter the 21st-century and just put an update on the website or social media even if it's we don't know yet and we will be making a decision at this point, it saves God knows how many of us queueing on the phones for 30 minutes to be told they don't know. My DD was a GP receptionist for a while and she got very frustrated with the partners not telling them what was going on so they had nothing to say to the public.

And the other thing is, I can't remember who said it, but online shopping, please help me! Some of my purchases are sensible, like needing proper zip up hoodies for the gym because all the ones I've got are pull over your head which really doesn't work if you're wearing a headband or a hat or wig or something, but it's just set me off on a chain of buying things to have nice stuff come through the post! I've just bought some Orla Kiely sandals, they were very cheap, but what are use are they going to be in mid September?!

@TopOfTheCliff I just don't have my social media notifications coming through to my phone. But we'll done for catching the mood!

I’m managing to tame my impulse to buy endless piles of crap by buying things for Christmas instead. Although I must admit I have test driven 5 cars now and only just stopped myself blowing a chunk of money on something I haven’t thought through just because I had this new “f*€k it why not” devil on my shoulder!

Still no news of my PET appointment. I have my next blood tests on Monday and am already building up the stress levels of finding out my new CA125 levels. I had a dream last night they’d dropped and was so relieved but then gutted to wake up and realise it was only a dream.

That's an idea great, I bought a bright yellow leopardprint T-shirt from eBay to take attention away from my increasingly crap looking hair, but maybe a Porsche would do that better. Sorry you're still waiting to hear, the feeling of dread is horrible, but fingers crossed for better news.

Hello everyone, and welcome/commiserations to the new joiners since I posted last week. Back home after my lumpectomy and axillary node clearance. Hospital experience wasn't great, but it's a relief to be home. I have weird and horrible nerve pain in my arm - not all the time but only when I move in certain directions, and it feels just as if something is burning or clawing at one specific spot in my upper arm, nowhere near the actual incisions. My breast and armpit hardly hurt at all. Two weeks to wait for my results appointment. Having helped DH recover from orthopaedic surgery, this feels very different - it's not the end in itself, but only the beginning. Still, it is at least the beginning, I guess. Hope everyone finds something to take pleasure in today, online shopping or whatever. I have picked some flowers from the garden and my elderly rescue cat has fallen asleep with one paw and her head on my leg.

Hi @dotty2 and good news you are home. You probably have nerve irritation which will take time to settle. I find a small dose of amitriptyline at night helps a lot along with paracetamol regularly. After 18 months I just have a numb patch in my armpit.
It is a long haul back from the axillary node clearance but if you rest now you should gradually be able to build strength without causing problems of tissue swelling. Your team will guide you on how much you can do this early. I always did too much!

Viral Tweet now over 3000 and have had GMB and HuffPost in touch 😂 I am lying low as I don’t want to upset my lovely local NHS team.

I think now it’s day 8 of chemo and my bone marrow injections are done things should ease up a bit. I’m going to make a Dorset apple cake today as a treat. Slowly! I’m grateful I don’t feel too bad today.

Sending positive waves to all
Top x

Thank you for the tip, Top, and enjoy the cake - we also have an apple glut and I might try to peel and cook a few for the freezer later.

I had the line put in. They did use local. I was told they wouldn't. Didn't feel a thing. If it wasn't for the bandage on my arm I wouldn't know it was in there. If you see what I mean.
@dotty2 hope the discomfort lessens soon for you. You're cat sounds very cute.

Not a Porsche but I did buy myself a pair of slippers. 🤣 I love slippers and these ones are lovely. Also my daughter made me a cup of tea when I got back from hospital as I was a bit tired and she just wandered in with one without being asked 🙂
@TopOfTheCliff glad you're feeling a bit better. Love the sound of the cake. My neighbour dropped over some apples from her tree the other day and we made a pie and crumble, plus some stew apple wich I've frozen down into portions for the kids porridge when they have it

I just thought I'd have a peak underneath the bandage and it seems to have bled a bit underneath the sticker bit that's holding things in place on my arm - it's seeped to the side of it if that makes sense.Is this ok , do you think? They did say it can bleed and that's why I'm going back to have it changed on Thursday. Im worried now because they said to use my arm as normal wich I have been .

Yes @Chocolateismyfavourite it may leak a bit round the line at first but don’t worry your blood will clot up nicely. Just keep it clean and dry. It will take a few days to heal.
Glad it was a bit less scary than you expected. One more step along the way to recovery!

I went in to have the tumour marker fitted and golly the radiologist lacked in empathy and social skills. She was brusque and hurt me , then when I asked if she had any views on why my December mammogram was clear only 8 months before I found the lump she was very defensive and dismissive. She tried to tell me the “hormones” wouldn’t have prevented the Triple negative tumour. Irrelevant and they are “hormone inhibitors” actually. Then they sent me for a check X-ray and dismissed me without seeing me again. I sat in the car and howled! I felt much better after a cup of tea and a nap at home. Anyway I am going to ask for radiology to review the films as annual screening has failed me.

This is a tough old battle. I feel like all my skin has been peeled off and I am raw!

Sending love to all
Top

PS tweet now nearing 5000 likes and I’ve ignored The Times and ITV this afternoon 😂

I go in tomorrow for my appointment with nuclear medicine before my op on Thursday. It’s like my baby knows something weird is going on, she’s not a clingy baby and I’m really trying to be normal around her but today she’s been super clingy and wants to be on me the entire time. Prob a coincidence but it’s making me feel sad and worried 😟

It must be really difficult with a baby Worry, she probably is very tuned in to what's going on with you, my DD wanted to be on me all the time as a baby because things were very difficult with her dad. All you can do is be reassuring and show her lots of love however difficult it feels (I have a teenager but there were times when it felt the cancer was this great big invisible wall coming between us).

Good luck at the hospital, my DB went to the institute for nuclear medicine but I never really understood what they did!

Been told my consultant has left and they are recruiting. This will be consultant no.7 I dont know what is happening with so many leaving . I have only actually met 3 of them face to face ! Its very unsettling, beginning to feel like not very important number now.

Had 3 weeks off my PARP and CA125 has gone up, only 2 points, but its the highest its been since my Op. WOnder if its just co incidence or something stirring. Been getting very down again and frightened about the future.

Hi all

The hospital rang today to book in my pre-op. It's the week after next. I had a little cry when I got off the phone it seems overwhelming. No surgery date yet as the theatre diary is apparently full. But I'm am urgent case so they are trying to squeeze me in.

So far I've bought slip on slippers, some (hopefully loose) pyjamas. I need to go through my clothes and find some comfy things aswell.

Need to get a long phone charger and tablet charger, not even sure if the WiFi will be decent to use tablet tbh.

I think I'm worried about when I go under not knowing how it's going to turn out eg will they be able to do laparoscopic or will it have to be laparotomy. And therefore if my stay is 1 night or 3-4

Then it's a 2-3 week wait to find out if the mass is cancer or not.

Also need to arrange the rest of the family, DH can maybe have the day of surgery and the day after off but that's it. I'm hoping to increase my toddlers hours at nursery temporarily. I wont be able to drive for 2-6 weeks depending on what surgery I have.

Hi, I’ve been thinking about you the last few days in particular and wondering how you are. It’s nice to see you popping in again and I’m sorry things are so difficult right now.

I can’t imagine being on Dr. number seven and only having met 3 of them so I hope it’s not too long before they’ve recruited someone else, that you you get to see them face to face and your mind is put at rest.

I hope you don’t mind me sending you a bit of a squeeze just so you know we’re here for you.

@Decafflatteplease how old are your children? I definitely wouldn’t have been able to manage alone with my 5 year old for probably 2/3 weeks post surgery. You’ll be very tired and stuff and sore whichever opening you end up having. Can you have someone to help if your DH can’t be off work? If he can’t take much time off he could work on surgery day maybe and until you’re discharged to give as much time as possible to look after you?

Uncertainty is a pain. Plan for worst case and hope for best. A full incision isn’t that bad, mine has healed really really well (in fact I went to Spain and wore bikinis 4 weeks post op as I decided I didn’t care) and as long as your mass is removed it’ll not really matter.

If you are anxious while in hospital before surgery ask for something. I was given sleep tablets the night before as I said how anxious I was, and then they sedated me just before the op after I had a spinal morphine injection (I’m not sure if you have that if they plan a keyhole op, but you do for a laparotomy, a 24 hour morphine spinal injection which is similar to an epidural and not overly relaxing) which was wonderful as I remember nothing of actually being wheeled in and having the general drugs put in, I just came to in recovery in no pain except for my back from lying flat.

@thereisonlyoneofme sorry to hear you're struggling . I go through phases like this, linked with the monthly dread of the CA125 results and now I have to have a CT soon so am building up to that. You've been on this path about the same time as me and to think you're on consultant 7 during this time is shocking.

Hi all, I recently had double masectomy and just been told today that I will be having chemotherapy. I don't know what to think or say, I am 45 with two DC 7and 11. I have been lurking on this page since the masectomy and I am touched by all of your courage. I hope to be as brave as you when the time comes for me to start treatment. I feel like I am rambling, I guess I don't know what to say.

I will keep reading your stories and hopefully gain some strenght from everyone's experience. Thank you.

So sorry to hear you’re joining us. @Makemineadecafplease . It must be a huge shock. There are lots of folk here with experience of bc and chemo. Lots of hands to hold. Please seek all the help you can- bc nurse, Macmillan, local bc groups.
I’ve not long finished surgery/ chemo/ radio and there are lots of folk with plenty of advice to offer. And rant here.

@Makemineadecafplease welcome to our lovely thread, so sorry you find yourself here. I have OC but lots of us here have BC and can advise on that. Feel free to say whatever is on your mind and someone will be able to help you. The unknown is so frightening, we have all been there and understand Xxx.

Hey everyone. So there going to be a delay to my chemo start date. Had a call from my oncologist yesterday morning.no cancer anywhere else in my body but they found a mass in my heart, half hour later cardiology had phoned me and asked me to go in after I had my picc dressing changed, had a scan, was admitted then by seven last night I'd been transferred to a specialist heart hospital and I'm having open heart surgery this afternoon if all goes to plan. It's called a myxoma and apparently usually benign and could have been sat there years but needs to come out now they know it's there as could cause a stroke of it breaks up.

Oh gosh @Chocolateismyfavourite, you come across as very calm for somebody having open heart surgery at extremely short notice! I met a fellow breast cancer survivor recently who'd also had heart problems & surgery. Reassuringly she said that she found the recovery surprisingly easy & not painful. Hope it goes smoothly.

@Chocolateismyfavourite oh my word, what a terrible shock for you. Thinking of you this afternoon and sending my love Xxx.

@Chocolateismyfavourite goodnesd what a huge shock! I’ll be thinking of you this afternoon, and wishing you a speedy recovery.

Thank you all. I don't know if I'm calm or not but I am in shock of it all, maybe a blessing in disguise accidentally finding it. I am nervous but I'll be asleep so it'll be the recovery that'll hit my Like a ton of bricks I expect. X