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, sorry - I guess I was generalising, and it's not true of all cancers. So perhaps it's less bad in one way, at least I'm going into it feeling well.

Sorry you're here @dotty2 - I was well when I had my hysterectomy in May and it's a weird feeling to be made ill to be made better. I am having chemo now and I have made sure I've been as healthy and fit as I can possibly be, and it has helped me to get through both so far with minimal side effects. I changed diet a bit and lost some weight and actually feel better in myself than I did before.

I also have had a difficult few years with caring responsibilities and not meeting my own needs and this has been a massive wake up call.

There's loads of knowledgable women here about pretty much every aspect of cancer and treatment or just to commiserate. Good luck with your surgery.

Welcome @dotty2 to the thread nobody wants to be on. It's a friendly place.
I am the thread fitness fanatic and after going through the whole cancer triathlon in 2020 and 2021 I spent a year doing weights and cardio and yoga and was back to full strength and fitness despite a full lymph node clearance. I also got my weight down to lower than when I was diagnosed. I am 62 now. I cycled 200km in December and sailed round the UK singlehanded this summer.

I have just found a new primary on the other side and off we go again round the carousel! I started chemotherapy last week and this time am feeling less ill so far. I am trying to keep up some exercise although with a newly fitted port I can't exercise yet. Just gentle walking.

Moderate Exercise of 150 minutes a week has been shown to reduce recurrence of BC by more than 48 percent. Avoiding alcohol reduces it by 15 percent. So I must be a freak of nature getting it again.

Have you got much to do to get sorted out before surgery? will DH need extra care? Do you have DC too? I am lucky my DH can look after me and is altogether lovely and the DC are grown up. Some blessings!

Regards to all
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Thank you both for your wise words - and sorry to hear about your recurrence @TopOfTheCliff . Your fitness experience is inspiring! I have just been for a last pre-surgery swim which felt really good - exercise really helps my mood and energy levels, but I don't always manage to prioritise it, so that will have to change. Interesting stats about it having such high benefit in terms of recurrence (though clearly no guarantees, as your experience shows). I hear you about the wake up call, @SierraSapphire.

DH has Early Onset Parkinson's. He is fairly recently diagnosed, so it seems very hard. (But I guess everyone on this thread knows about the unfairness of life...). He is still fit and capable, so he will be able to look after me when I need it. We have teenagers too, who are helpful round the house and with cooking etc, when they know we really need them to be (but obviously need emotional support and I don't want to put too much responsibility on them - they are both in exam years too). DH's main symptoms are fatigue and some mobility issues, but his symptoms are worse when he is stressed. So I have probably been shouldering too much of the burden of domestic stuff, to take the pressure off him, and to give him time to rest and exercise etc. He also can't drive v long distances or late at night as he tends to get sleepy in the car, so I do most of the driving - bit worried about how quickly I will be able to get back to driving. But I keep reminding myself that a lot of people walk this path, that it could be worse, and that I just have to keep putting one foot in front of the other. Am rambling now...

@TopOfTheCliff this is so great to hear! Ok I haven't done as much as you, but I run, swim (ok can't do that with a line fitted) and yoga every day including arm balances and inversions wich I love and I'm meant to be starting yoga teacher training in January. You are a machine by the sounds of it! Also I don't bliming drink alcohol - I should take it up because avoiding it hasn't helped not getting it ha

One of the things I found surprising when I was doing my research was that smoking was protective against endometrial cancer - I wondered whether I should take it up! It's theorised that it's something to do with it effects on oestrogen, though I don't think it also holds true for breast cancer.

I also haven't drunk alcohol for four years, giving it up didn't work for me!

@TopOfTheCliff glad your first chemo went without incident, and your port was useful.
Welcome all comers to the thread, take a seat and someone will hold your hand if you need it, commiserate with you for the tough times and celebrate the small wins.

I had my NHS lymphoedema appointment on Monday, and I was remeasured. My arm has reduced from 28.8% bigger to only 16% bigger just by swimming, MLD and wearing my comfiwave sleeve at night.
I also managed to get a further 5 private sessions funded by my insurance which is a comfort.
I am working on reducing my genital lymphoedema too, which is not so easy.

@dotty2 , I could have written your post, although I did not take such sensible care of myself prior to surgery… to me it was like walking off a cliff, (hi @TopOfTheCliff ), with no idea where or how I would land. I felt fine, but I knew if I did not have treatment it would kill me, but I also knew the treatment would change my life.
I actually still struggle with that every day.

Hi all, can I join? Currently feeling very scared and overwhelmed. Waiting on surgery for suspected ovarian cancer. I have a large 7cm mass apparently and raised ca125.
On the cancer pathway.

I'm expecting a laparoscopy possibly laparotomy has anyone had these surgeries? I'm expecting recovery to be similar to a C-section which I've had previously.

I just wish they would ring with a date for surgery I feel in limbo and can't stop crying and feel utterly emotionally exhausted.

Hi @Decafflatteplease sorry that you find yourself here. I remember the period between being diagnosed and waiting for my hysterectomy was awful, they told me originally 4 to 6 weeks so I worked on that basis but it was eight weeks in the end. Once I actually had a day it felt so much better to be able to plan for it.

I had a full hysterectomy with cervix, Fallopian tubes and ovaries removed, originally it was supposed be for endometrial cancer which I did have but they also found a small patch of ovarian cancer, actually my hospital didn't find it the Royal Marsden found it when I went for a second opinion.

I had laparoscopic surgery and I found the recovery fine, I was out within a couple of days, and gradually built up my walking after that, although I was very fit to start off with which I think helped. I didn't take any painkillers after the second day. Trapped wind and constipation are often one of the biggest things, so make sure you get yourself some WindEze and stool softeners / laxatives etc. (The things you end up talking about after you've had a cancer diagnosis!) A pillow to travel about in in the car after your operation to put it between the seatbelt and your stomach is also useful.

I've made use of some of the charities, and I found the nurses from the eve appeal to be brilliant in talking things through with me.

Hi @Decafflatteplease , welcome.

I had a laparotomy with debulking (omentum, ovaries, womb, cervix, lymph nodes) 13 weeks ago. I had 2 ovarian masses.

Like you, i had a previous C-section, and I found recovery very similar pain wise. It is different because your core muscles are cut so you cannot use them at all for a few weeks. You’ll need to push yourself up using arms etc which can be tiring. The first week was very difficult, I was sore and stiff and miserable but after that it really wasn’t as bad as I’d feared. I used only paracetamol from 24 hours post surgery. The ladies on my ward who had laparoscopic surgeries were all up and about within a day or so, it took the vertical incision ladies a few days longer!

I too am all too aware of how you feel right now and how very very scary it is. People say you feel better once you have a plan, and to some degree that is true, but I don’t think the fear and dread really leaves. I was staged at 3a ovarian cancer post surgery due to some lymph spread and am now 2 rounds down out of 6 chemo. My cancer is low grade.

If you have any questions or want to chat please just ask, in here or you are welcome to PM me.

Thanks @SierraSapphire and @AGreatUsername .

I wish I wasn't so up and down. Been snapping at the DC it's not fair.

I'm expecting laparoscopic with a possibility of laparotomy it depends when they get in there.

They said I'll be in one night hopefully then I should know 2 weeks after surgery if it's cancer or not. But I haven't got a surgery date yet.

Trying to think of clothes etc to pack for hospital and post surgery, wish I hadn't given away all.my maternity stuff now 😂

I need to get myself fit really, I'm a regular swimmer but am very overweight. BMI 37 ☹️

Clothing wise, buy the biggest granny pants you can. Up to your belly button or higher. I couldn’t bear anything on my scar for a good 10 weeks. I lived in soft joggers (from George) and treated myself to some nice pyjamas. You will need nighties for your hospital stay and first few weeks, M&S do nice cotton ones for about £10.

Wear flip flops or other shoes which don’t require using hands to put them on for the hospital and bending is hard if you do have a laparotomy.

Like Sierra said, the trapped wind is not nice. I didn’t use the laxatives offered as I wasn’t uncomfortable with it and just waited until it happened naturally but the wind wasn’t nice and lasted a few weeks.

Best thing I bought for hospital, was a Snoozeband! Helped me sleep as I had music or my audio books playing and couldn’t hear the hospital noise. I also took a 3m charger cable and a peg and pegged it to my bed sheet, you don’t want to drop it on the floor and not be able to get it until a nurse appears!

@Decafflatteplease welcome to our lovely thread, so sorry you find yourself here. I have stage 3c OC and had a total abdominal hysterectomy, omentectomy and endometrial lesions excised from my peritoneum 18 months ago. I have a 7 inch vertical scar. Great advice from the other ladies about clothes and also wind relief. See if you can get some peppermint oil, I think they sell it on Amazon, I had awful wind pain and the lady in the next bed lent me her peppermint oil which you put a few drops into hot water to drink. Honestly, some relief was mine in about 10 minutes, I had no idea we were supposed to take in our own medication for this.

I wear pyjamas normally so just wore the hospital nighties for my stay, they were pink and go over your head so the back is closed, not like a gown. Don't worry about towels, they have loads of those. Also, a notebook and pen is useful to jot down questions or advice given.

I can totally relate to the constant crying. I was like that and nothing would ease my misery, it's so hard not knowing what's going to happen and when your surgery is. Feel free to unload on here, we have all lived the cold fear of the unknown .

Welcome @Decafflatteplease come and join the thread nobody wants to be on. You are still in shock and it is okay to cry, swear, laugh and do whatever you need to do to get your head round what is happening. It will all begin to make sense gradually but just for now look after yourself. Try to breathe calmly, get an App or listen to music or whatever works for you. The OC ladies will help you with all the technical stuff but we all know a bit how you feel.

@Chocolateismyfavourite my top tip is don’t break your leg during chemotherapy like I did last time! DH won’t let me do anything with ladders or tricky jobs while he is out now. Very wisely!

I am having a quiet day of contemplation. Now the steroids are winding down I am a bit less manic but thankfully the EC seems a lot gentler than the FEC was. The MRI scan was fine, but my tinnitus is now roaring like a wind tunnel.
I am mostly in a state of “what the fuck just happened?” and trying to explain to my baffled friends and relatives that I have not apparently got metastatic cancer but a whole new primary one which is a better thing apparently. Trust me to be the freak. I think they are expecting me to die now, not to go on charging round the countryside in Tigger mode.
I am gearing up to go for a gentle walk to see the weed patch that calls itself my allotment. I am going to get every person who says they want to help me up there digging potatoes and weeding the beds on a rota.
I am quite liking the way the whole country has gone into mourning. It is in tune with my mood having had my busy life snatched away again. I’m just annoyed they have cancelled the Covid booster I had booked for 19th because of HMQ funeral RIP.

Sending zen calm and positivity to you all
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I just wanted to post a general message to all our new ladies to let them know that when you get a cancer diagnosis, you are eligible for free prescriptions. No-one told me this and I found out by accident, having been paying for mine for months after my diagnosis. It's a simple form from you can get from your GP surgery. If you're currently using a pre-payment certificate you can apply online for a refund of the remaining time. Hope that helps anyone who was in my situation.

Thanks for the hospital tips @AGreatUsername - I'm going in for my DIEP breast construction in 3wks so useful for that.

I had a review with my oncologist having finished adjuvant chemo & was surprised to learn Herceptin has a biological half-life of 4-6wks. It likes to hang around!

@Decafflatteplease, hello there.

I had a 5-6kg ovarian cyst removed that turned out to be stage 1a Mucinous ovarian cancer. I was filleted like a fish, there’s no other way to put it, and I had what’s called a staging laparotomy which is the removal of all of my lady bits plus my appendix, omemtum and some lymph nodes for testing. Physically I found the surgery fine but mentally the shock of the whole thing and how it all came about caused me to have what we called in the old days a ‘nervous breakdown’. Almost two years on I’m still on medication but at a greatly reduced dose and I still see my psychiatrist whenever I want, she’s a lady who specializes in women who live with serious/life threatening/long term illness and its affect on people’s mental health. I’ve hadn’t needed any treatment apart from my surgery but I do have to have 6 monthly check ups and if I can get to November with a re-occurrence I’ll go on to yearly check ups but I’m not sure if I’ll ask to stay on the 6 monthly ones or not. Anyway, I just wanted to say to you that if you can’t cope with things mentally it’s ok, don’t be afraid to tell your loved ones or your Doctor that you’re struggling. You don’t have to pretend you’re ok and coping and you don’t have to be brave either - I was fortunate that my collapse had probably been a long time coming due to other things going on in my life and it was so obvious that my daughters had psychiatrists involved in my care the day my cyst was found.

I hope some of this helps you. The ladies here have been great support to me and whilst I can’t talk about chemotherapy etc I’m happy to help otherwise.

Can I come join? @NanaNelly yours was the post I needed to read today. I was diagnosed with low-grade Non-Hodgkin Lymphoma in 2019 although at that time was grade 1 and thought to be indolent. Fast forward to now and after a lot of gastro symptoms I hadn't assumed were related I have large masses in my pelvis and bowel. Was admitted to hospital for a week of IV steroids with scary talk of bowel perforation risk and started chemo/antibody therapy last week.

Have been floored the last 48 hours with panic and fear- have never experienced anxiety before, could honestly have believed I was having a heart attack! Luckily we have an amazing out of hours GP service and I was given diazepam for short-term relief. Anyone been through similar- will this happen every chemo? Or was it the steroids? Really apprehensive about the journey ahead, particularly as I have a 4yo and nearly 2yo. I have 6 cycles total then 2 years of maintenance.

@Aestas and @Decafflatteplease

With me, anxiety tends to go straight to my stomach. My head stays clear and rational but I simply can't eat. Diazepam works wonders, as and when, in the short term, but when it's likely to be long-haul, I found a low dose anti-depressant is a huge help in getting on with 'normal life'. It doesn't turn you into a zombie, just makes it easier to keep calm and carry on. Don't hesitate to have a word with your GP. I'm sure they'll be sympathetic.

Morning! Anyone else not sure what's going on with treatment with the bank holiday? I'm supposed to have a blood test at the GPs on Monday for consultant on Tues and chemo on Wed. Just held on for GP to be told they don't know anything yet about whether it will go ahead. I'm taking my DM to a medical appointment on Friday so can't do it then and don't want to bring it further forward because of risk of white blood cells not having recovered (and I'm working on Thursday anyway). I also have to fit in taking DD to uni on the Saturday or Sunday. Nothing that I can do other than wait, but I like to have everything planned so I find it difficult to be hanging on.

@SierraSapphire can you get bloods done at the hospital? I was able to get mine on Monday bank hols this spring? I could book appts on line

I probably could thesandwich but it will be a 2.5 hour round trip rather than 15 minutes, so need my GP surgery to make a decision first. I guess there's lots of factors they have to consider, but the receptionist couldn't tell me when they'd know, and I'm out at work the next three days after this, so making phone calls will be more difficult. I'm just sounding off because everything always seems harder than it should be!

Afternoon everyone. Just wanted to ask, when the picc line is in place, does it hurt or feel uncomfortable or will I get use to it?
Hugs and best wishes to everyone.

Welcome @Aestas come and join the friendliest thread. Blind terror doesn’t last luckily, it’s hard to sustain that level of adrenaline for long so it settles to a lower level thankfully. Meanwhile anything that distracts you or helps you breath calmly is good. The steroids give you a wired feeling and insomnia but I find I am actually euphoric on them and even more positive than usual. Like @Thymeout I don’t feel anxious but I feel very nauseated instead. We all do it differently.

@SierraSapphire it’s really frustrating about the sudden notice Bank Holiday. The NHS staff are fed up because they don’t want to delay seeing patients and have nowhere to book them into instead of Monday but don’t have childcare if the schools are closed.
I tweeted something about having my Covid booster on 19th cancelled and as it is carefully timed before my next chemotherapy I won’t be able to rebook it for weeks. The Tweet has taken off and has had 450 likes already, so there is a lot of sympathy out there. It seems like an NHSE knee jerk reaction which is going to cause lots of problems.
Could you go in a bit early and have the bloods the same day as you see the Consultant?

@Chocolateismyfavourite the PICC can be a bit sore initially but you can use a heat pack to soothe it. Once it has settled you don’t feel anything.

Help! How can I shut up Twitter? It’s driving me nuts now 😂

Love to all
Top x