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

@FizzyOrange The HRD test has never been mentioned by any of my oncologists ! Dont even know what it is. I know Im BRCA negative.
Ill have to remember to ask if it was don e when I had the Op. Im so wishing for my old boring life back though I know that will never happen.
I do have very dark times when all I can think about is dying.
Im taking myself off for a couple of days in a posh hotel and going first class on the train to try and fill my head with something nice for a change!

Hi Fizzy sorry to hear that you are still going through the mill .I have never hard of a HRD test is that something they doing in the lab, is it the same as BRACA.?

@thereisonlyoneofme the HRD test is to check for genetic markers in the actual tumour. I am also BRCA negative thankfully. I hope you have a lovely time away and that it lifts your spirits. I also yearn for my boring life back and also have dark days with a lot of weeping, you're not alone.

@Runningwithoutstopping yes it is a lab test which they have to send off and it takes weeks to come back. It is a different test to BRCA, you can be negative for one and positive for the other or negative/positive for both I think. Did you have the BRCA test? I had convinced myself I was BRCA positive as I am young for OC, not yet menopausal, not drunk or smoked and was quite slim so it would have explained my 'bad luck'.

@Happy36 - that sounds thoroughly miserable especially in this heat. I hope you have got sone relief. My doctor prescribed medi derma barrier cream which helped me.

@TopOfTheCliff - sorry to hear about the car / van. I hope the police find them.

Dsis has kindly taken the DD’s away for a few days. First time they have been away from me and I’m missing them. It’s made me think of all the things they will do without me if I’m not here. I’m not normally prone to this way of thinking but everyone in my real life seems to be on holiday/ getting on with normal things.

Even though I am more than half way through I still have 7 sessions to go so still feels a long time.

How long did everyone take to get over Chemo once your sessions were done? I’ve generally felt quite good but I’m not sure now if I’m zapped from chemo, the heat or generally just the whole cancer thing is catching up with me.

Today I went to mop up underboob sweat earlier & surprised myself that I had to only do it on one side

@barkydog I had to have some stitches removed from my mastectomy scar as they were preventing full healing. They were supposed to be self-dissolving but didn't

@MrsPnut Hoping your sore chest has calmed down

@NoOneWillReply Have you done the bowel prep yet or is it in the coming week? This thread is excellent for no-nonsense advice on things that might be considered TMI elsewhere.

I looked it up and can see it helps decide on future treatment.I was BRACA negative tumour and blood test. I asked my oncologist why I got OC because I'm young for OC, pre menopausal. There seems to be no answer to that and I think I just have to accept that 'I just get things ' lucky me !!!

@haunteddishcloth I'm about halfway through tonight's lot. It doesn't taste too bad with cordial added. Thanks for thinking of me, I'm not doing too well at the moment

Hope others are doing as well as they can be, and it isn't too hit where you are.

*hot

@FizzyOrange I wasn't tested for hrd as I have the wrong type of oc so no parp. Also premenopause and no risk factors so just the un-luck of the draw I guess.

@TopOfTheCliff sorry about your car and hope its sorted quickly. Even the most resilient person has a limit and it does sometimes feel as though there is no escape and let up. I hope you did have pancakes with ice cream - I went for brunch with ds2 and we sat outside a little cafe and I ate the most giant stack of pancakes which were amazing so if you're ever up north let me know!

@thereisonlyoneofme Showing my age as a child of the seventies it helps me to see my problems as carrying a stack of boxes crackerjack style and I can manage until someone puts the cabbage on and then they all tumble down. Those are the dark days where I feel that my life is utterly shit and is never going to get any better but I am still clinging to it with every ounce of strength I have because even a shit life is better than the alternative.

@acinonyx2 you're right its the little problems that tip you over the edge - i cried when ds2 failed his driving test as I felt surely it was our turn for a break.

@JeanLannes about six weeks? The heat will make you feel more drained though.

@happy36 sending hugs as that sounds miserable. Hope you get some relief x

I had surgery pre assessment on fri and apparently I'm at high risk of all sorts of serious complications so they need to book an hdu bed for me. I feel quite down about it as i thought I was doing ok with getting fit again but obviously not.

Sending much love to everyone who is going through treatment or wound healing x

@OrdinaryLife I had a hysterectomy in October I also had a HDU bed booked for any complications. I was really worried about this but it was fine. Someone on here told me to try and think of HDU as a benefit as you get 1-1 nursing.
When you are ready to get your fitness back you will. I started couch to 5k in April and I' m doing a 10_k in September. Good luck with the op

Just found out I have been provisionally pencilled in on the theatre list for the eighth of August, which just happens to be my son's birthday. Don't know what to do as desperately want the surgery to be over and done with, but don't want him to spend his birthday upset.

@NoOneWillReply how did it go? Have been thinking of you today

My car got towed away at last by the repair shop but I still don’t have a replacement. I would love to have a “chat” with the inconsiderate scrote who trashed my car and drove off. I am feeling much calmer now.

Today I went to a free yoga class for BC survivors. The teacher is lovely and bonkers. There was chanting and there were bells and lots of chakras and good and bad energy. I think it is just what I need for the next stage of my recovery. I told her I can read auras. I may become a Mystic

@Elle200 I think you need to have your op. Why not celebrate his birthday a day early? It will distract you nicely.

@OrdinaryLife it’s good that they are taking things seriously and planning to keep you safe. They know what they are doing. Be brave!

Love to all
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@TopoftheCliff - I think I might look up such a yoga class. I’m not very woo, but I would like to find something relaxing and exercisey.
@Acinonyx2 and @FizzyOrange thanks for the boat trip wig tips. I think I’ll be brave and wear my beanie and cap instead. Don’t want a salty wig anyway.
@Acinonyx2 wil,check out the pub in a cave. I’ve booked a puffin trip from Amble on Sea. Thinking of going to Alnmouth and Warkworth.

On another topic, should I avoid lobster on chemotherapy? I’m avoiding raw shellfish obviously.

@Elle200 we once postponed DDs birthday for two month due to health issues, she loved the novelty of having an ‘unbirthday birthday’

Speaking of yoga, I have both DDs booked in for a Yoga with Alpacas session next week - spot of yoga in a field with the gorgeous animals wandering around you, then time at the end to feed and pet. They absolutely can’t wait, and it’s given us all something positive to focus on.

@TopOfTheCliff I finished drinking the first litre last night at 7.30 and went to bed at 10.30 thinking it hadn’t worked as I had only been to the toilet once. But by 5.30 this morning I knew it had worked The 2nd litre this morning was so much harder as I couldn’t have a sip of water inbetween mouthfuls and I got so nauseous I couldn’t finish every last drop, think I left around 100mls. I figured I would lose more by throwing up if I kept going.
The camera itself was a doddle tbh, easy to swallow, and then the belt with alert device beeps very loudly telling you what number you’re at so you can follow the instructions. Top tip though, the leaflet says to wear something loose and baggy so I assumed the belt was going under the clothes, but no, you wear it like a handbag with all wires everywhere so if I had to do it again I would take a jacket or something as I felt a bit daft going back to my car. Camera capsule came out about an hour ago so I’m already in bed as I’m shattered. Fingers crossed I’m not up all night pooping!

A 10 day wait now for results, so I’ll hang around on the thread if that’s ok? I know I don’t post much (other than this essay of a post) but I do read all and sending love and strength to everyone

@NoOneWillReply I hope your results come back quickly.

@TopOfTheCliff I hope the car is repaired without too much hassle. I know when I drove into a cherry picker at work, it took over a month for my car to be repaired because of waiting for parts.

@Lunificent I haven’t avoided any food and I’d definitely want to eat lobster.

My chest is rock solid and still very swollen with the attractive appearance of corned beef. I saw my oncologist again last night and I am looking at at least a month until it goes down. He also said that I am the very first extravasation he’s ever had. Thanks 😔

The HatH team have called me a few times apologising in the last week, I have my lineagram today and once we know what my port looks like then I shall have more of an idea of why it happened. For now, ice packs and anti inflammatories three times a day as well as photographing corned beef boob every other day so we can track it’s progress.

@MrsPnut [shocked] That is nasty. And as for the apologies - fine words butter no parsnips. Always seems to be a delay in getting relatively rare outcomes properly diagnosed and the delay is a problem. I met a lady sent to my hospital to sort out a major extravasation incident (whole chemo load went in outside the port) and she told me there is a protocol to be implemented within so many ours of this happening to minimise the impact. In her case - they apparently weren't aware of the protocol and in other cases I suppose they just don't realise what the problem is in time.

Really sorry this has happened, you must be so fed up.

Wrt discussion of posting styles - when I have more time I have a good look through and post to people - but if not - I just do what catches my attention rather than just not post IYSWIM.

@MrsPnut that sounds awful, I hope it clears up as soon as possible, you have enough to deal with

Waves to all

Hey all, everyone seems to be getting it tough right now. Hang on in there, you are the strongest bunch of people I know.
MrsPnut that sounds sore and shit and it shouldn't have happened. I really hope it resolves quickly. Are you allowed to hot and cold compress?

I have my first post treatment scan on 9th August so now I'm on the ceiling with anxiety. Cancer really is the gift that keeps on giving. Even if my results are good there will always be another scan, another chance for bad news, another, another, another...
This is the rest of my life. I've never been an anxious person. But this has changed me profoundly and it's like a little death.

Thanks @Runningwithoutstoppingand @TopOfTheCliff
@MrsPnut that sounds horrific and the last thing anyone would want fingers crossed it starts to improve.

@NoOneWillReply ah love an alpaca

@KitBot waiting is always hard and I don't know how others manage the rollercoaster of emotions but I am at the start of this and I'm struggling too. Much love and hand holding x

@KitBot I was like that when I had my first MRI after my brachytherapy. I knew from the MRI in between radiotherapy and brachytherapy that there was NED but I was still nervous. Hopefully all will be well and each time it will get a bit easier.

My chest is horrific, think a slab of corned beef attached and one boob twice the size of the other.
I am on ice packs and naproxen 3 times a day and it should resolve in 4 - 5 weeks. There is no extravasation protocol for ports, if it had been a limb then they could have injected steroids into the tissues but that isn't an option elsewhere.
It's hard to bend forwards and I can't sleep on either side so am being propped up at night but that is tough from a pressure sore point. That's what is waking me up rather than my chest. Once I'm in a position then my chest settles and doesn't hurt but when I move, it wakes up and reminds me that it is there.

So sorry you are having to go through this MrsPnut. Sounds painful and distressing. I hope it eases up quickly. I sleep propped up due to reflux and find sitting on a V shaped pillow helps the pressure areas and is surprisingly comfy.

Top sorry to hear about the ongoing stressors. The yoga class sounds brilliant. Having never heard of a chakra until March I spend a lot of time aligning mine these days!

Lunificent I've avoided some foods but would eat Lobster.

NoOne glad it went ok and wishing you all the best for your results.

Kitbot it's a life changer that's for sure. A friend of mine said shortly after my diagnosis "in a couple of weeks we'll be talking about something else". The reality is obviously completely different.

Ordinary I went straight to ITU after my op which was always the plan and I was really grateful for the 1:1 support. I did have one minor episode requiring a team response but they were on top of it in 15 mins and then it was over. I was there four days in the end and didn't want to go to the ward.

Jean I felt back to normal and my bloods were fine after about 8 weeks of finishing chemo. I'm with you on thoughts of life going on without you. It's also not like me to think this way but these fears are there for us all I guess.

Fizzy I hope the liver biopsy goes ok and I'm keeping everything crossed it's nothing. I had a full genetic screen at diagnosis as I'm a outlier for oesophageal cancer by about 25 years. All negative and I'm also 'just unlucky'. I am going to request a toxicology screen to look for heavy metals, just out of interest really.

Theresonlyoneofme Hope you had a good break and it has lifted your mood.

Big wave and love to anyone I've missed.

I've been home a couple of weeks now and all seems to be going ok. Food is now staying in, my poo's have regained their colour and I've managed to regain the weight I lost. My pathology result were not great, so that was disappointing but the complete clinical response stands in my favour I'm told. Most importantly for me is I feel fit and well, despite everything my body has been through, so I'm just focusing on that and staying in the present. Sunshine helps too I think.

Wishing everyone a good day

@MrsPnut you are really suffering, it sounds horrific! I am hoping it eases for you soon.

@NoOneWillReply thinking of you as you wait, it truly is torture.

@quinin thank you. I'm pleased you're home and feeling well, that is good to hear.

Im back from my short break, which was a bit of a disaster as all the things I wanted to see were still closed! and the train broke down on the way home.
However, possibly the most embarassing thing was when I was lying on the hotel bed in my knickers and t shirt in the heat wave and the door suddenly opened and a young lad walked in, hastily backing out. Found out he was a hotel employee who had used the master key card and gone into the wrong room. The next time our eyes met in the bar we both hastily averted our eyes. I think I have scarred him for life seeing the arse of a 73 year old woman. If this had happened when I was younger I would have been mortified, as it was I felt I didnt care!
I would like to have been a fly on the wall of the staff rest room.

@KitBot I have come to the conclusion that the only way to proceed after finishing treatment is to act and believe as if I am cured and not entertain the possibility that the cancer could still be there or come back. Obviously I will check for signs and report anything worrying but I don’t want to blight my life with anxiety about something that might never happen. I manage lots of things in life with a bit of cheery denial so I shall just add my cancer to the list. It probably wouldn’t work for everyone but it does for me!

@MrsPnut I do hope you are getting better and your pain is controlled. It sounds appalling. You deserve something special as a treat soon.

@thereisonlyoneofme I find one of the pleasures of getting older is not caring what other people think of me. They say women over 60 become invisible which can work to your advantage. I am starting to wear exactly what I want to wear and go where and do what I want! It’s a shame things were still closed for you. Could you go back?

@quinin surely a Complete response is what you hope for? It means the chemo has killed all the cancer cells everywhere. Fantastic news!

I have managed a week with no further disasters and have recovered my equilibrium. I took my DDs out sailing and they swam from the boat in the glorious sunshine. It was a magical day winding up with fish and chips on the dock.

Regards to all. Hope life is treating you kindly.
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I hope it's ok if I join in. Found out this week that I have cervical cancer. Have had some full body scans and waiting to get an appointment with an oncologist now. It's completely blindsided me and the waiting is horrendous.