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All the fives... Tamoxigang cancer support thread 55

926 replies

WhatWouldLeslieKnopeDo · 12/03/2016 14:01

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

OP posts:
Mysillydog · 28/03/2016 16:55

Hi rover, I echo what Royal said, the exercises are important. You will still be able to carry a normal handbag unless you BCN has noted you carry about your kitchen sink in you bag. Mainly it's about avoiding injuring your arm, wearing gloves when gardening, trying not to burn yourself etc, and if you get an infection then seeking medical advice quickly rather than just waiting for it to get better on its own. The risks with a SNB are quite small, but still avoid blood tests, injections and having blood pressure taken on the operated side. I'm dominantly right handed and still use my right hand and I have had a full clearance, although I try to carry heavy loads in my left hand.

I know what you mean about wanting to run away and pretend that this isn't happening. I still feel that way and I'm nearly halfway through chemo.

fresta · 28/03/2016 17:49

I've been reading about lympoedema risk and axillary clearance as I am right handed and mine is going to be the right side. I haven't read anything that suggests you shouldn't use your arm for normal everyday tasks like gardening, cleaning, cooking etc. I also read somewhere that a study showed that women who did weight training actually suffered less incidences or flares of lymphedema. It sounds plausible to me that using the muscles in the arm will help to drain the fluid better than not using the arm. Surely lifting will keep the arm stronger and healthier? I won't be taking up weight lifting any time soon though, lifting the massive laundry basket I own is enough exercise for me Grin.

pepperrabbit · 28/03/2016 18:42

I had my WLE & SNB almost exactly 4 weeks ago now and I dragged 2 rotten & actually quite short fence panels across the garden to the bonfire this afternoon - I did wear gloves though. I'm right handed and mine is right sided too, so I'm mainly avoiding bloods etc in my right arm. I can do a lot of stuff left handed anyway as I had an arthroscopy on my right wrist a few years back, so kettles and leverage stuff - it did take a while to train up my left hand to be useful though.
I have found it's only this week my arm/breast feel more normal and have been diligently doing the exercises. The full ANC is obviously more risky so I'm hoping to be more used to it by the time that happens.
I have been carrying my handbag on my left arm but can't get the hang of keeping it on my shoulder - it falls off. So I end up like the queen with it over the crook of my arm Hmm. I may try an across the body type bag?

Mysillydog · 28/03/2016 19:40

I tried my wig on today for the first time and it looks awful on me. I have had it for a few weeks but didn't have a wig cap until Thursday and then went away for the Easter weekend so had not wanted to try it on whilst still moulting.

When I had my wig fitting I really liked a particular style, but not the colours she had. So I tried another wig on and really liked the colour, so I ordered a wig in the style and colour I liked. It really doesn't work and looks like a comedy wig. I didn't pay for my wig, but I wonder if I can send it back. I will ask at the hospital tomorrow. I haven't worn it apart from trying it on, and wore a wig cap for that. I know that clothes can be sent back, but I'm not sure about wigs.

I actually quite like wearing scarves and hats so I guess I will just stick with these. Perhaps I will pay for a wig, but if I do I will bring a trusted friend with me and not get one that I haven't actually tried on.

mumto2andnomore · 28/03/2016 20:52

Any chance you can get it trimmed a bit silly dog so it looks better ?

I had full node clearance 2 years ago and though I am careful you still have to live. I still carry my handbag on that side and sometimes shopping bags etc. I do use it as an excuse not to carry my suitcase when I go on holiday ! I have even been in a jacuzzi but with my arm draped out of the side. I've had mosquito bites on that arm and been fine. Think you need to be careful but not too careful and if you do notice any swelling go and get seen sooner rather than later

rovercat · 28/03/2016 22:44

Thanks everyone, you've all put a lot of my fears to rest. I'll have to see how things work out but by the sound of it common sense is the key and doing the exercises!! Fortunately my handbag isn't that heavy so I'll try and keep it on my left side although I suspect there will be times when I forget so time for a good clearout Smile. When my bcn was saying that doing anything with my right arm was going to be more or less impossible I did wonder how all the women who have this surgery manage to live at all.

mrsrhodgilbert · 29/03/2016 14:48

Hi rover, just to add a further note of sanity, I had WLE and SNB nearly two years ago. I do everything perfectly normally, I even lift weights at the gym. I wouldn't carry heavy shopping bags for a long time but that's easily avoided. I think your nurse was being a touch dramatic. I didn't drive for about six weeks after surgery because it was my left side and changing gear was uncomfortable, plus dd1 had just passed her driving test and relished driving me around. Do the exercises thoroughly. As we had a holiday already booked I was swimming two months after surgery and a week after rads. If you need any more info please ask.

Hello to everyone else.

rovercat · 29/03/2016 18:44

Thanks mrs, Before I started chemo she told me how she always had other ladies sobbing down the phone saying they couldn't cope with having anymore chemo as it was so awful and she had to persuade them to go through with it! I can't decide if she likes to make it sound worse than it is so you'll think it's easier or whether she likes a bit of drama. From everything that people have posted I feel much better about it all and I'll just do the exercises and go with the flow Smile.

WhatWouldLeslieKnopeDo · 30/03/2016 22:27

pepper how were your scan results? Flowers

Anna nice to see you :) clearing things sounds therapeutic. Most of my associations are with foods, and I'm gradually becoming able to eat my "chemo foods".

Elmindarina I hope things are feeling more manageable this week, and that your DS's appointment goes well Star

rover your nurse sounds like my now-retired nurse. I emailed her a quick question about some paperwork, and she replied telling me to live every day as if it was my last Hmm she was kind, but melodramatic.

I know people who have struggled with chemo to varying degrees, but can only recall one who was even considering jacking it in Confused

The way I saw it, it's six months of feeling grim in exchange for hopefully a long and healthy life! :)

Mysillydog sorry about your wig. I hope you can get a trim, or swap it for something you prefer. I hope your blood results were OK.

royalmama how's your skin holding up?

Hopefully Lily is having a marvellous time in the sunshine. It has been quite sunny here today, though it kept clouding over.

I hope everyone enjoyed the Easter weekend whether you celebrate or not. If nothing else it's a nice long weekend and an excuse for chocolate Grin

OP posts:
royalmama · 31/03/2016 08:40

Good morning all. Thank you leslie for asking. I am afraid my skin is worse off :( i have ruptures and breakage and am using various creams now. The sensation I get is one of acute burning and stinging. Oh well. I will have to hold out as there is nothing else to be done.
Waving to everybody else.
Take care all.

mumto2andnomore · 31/03/2016 09:29

Sorry to hear that Royal have you got dressings from the hospital ? All I will say is that once it starts to heal it does heal quickly so hang in there x

pepperrabbit · 31/03/2016 18:45

Hi All
royal that does sound grim Sad I hope they can give you something stronger or more effective - how long do you have to go with the rads, is it one more week?

I had a bit of a rollercoaster day yesterday. I was so worried about the scan results I had sort of switched off. They only do those scans if they really think it's likely to have spread so it was a huge relief when they said they were clear. DH and I were both very emotional. Even the surgeon looked genuinely relieved.
So at the oncology appointment (3 hours later...) they revised the recommendation for the ANC to rads on the armpit so no more surgery there.
I get 4 doses of chemo, each one a combo of docetaxel and just the "C" bit of the FEC (cyclophosphamide) as far as I can tell.
Then they said (cos just when you think you understand the plan they throw in a curve ball) that they need to look at ovarian suppression and remove my ovaries Hmm Shock
Apparently my specific cancer is so hormone receptive they need to stop my ovaries completely which allows me to take a drug beginning with "L" that I can't remember, instead of tamoxifen because the L one will be much more effective to prevent recurrence. So safer all round. I've obviously done some research today and the surgery option seems to cause a sudden and more severe menopause than the gentler injections every 28 days option so I need to ask a bit more about my choices.

dinster · 01/04/2016 03:25

Pepper, that is splendid about the clear scan. Sounds like one of those days when you feel like you've been through an extra spin cycle in the washing machine though! Hope you have time now to digest all the info...

How are you doing in yourself, royal? Is this the last week of rads? I hope the healing can start v soon and that you can rest as needed.

I've had 2 of 20 zaps so far. It's quite sci-fi, isn't it?

Hello and spring Flowers to all.

lozwil · 01/04/2016 08:45

Happy Friday everyone.

Sorry this is going to be me me me

I have waiting for a gastroenterology appointment since Dec I was hoping at least to be referred for a colonoscopy as I have had lower back ache abdominal pains and switching from not being able to go to the loo at all to getting up 5 times a night my dad has a history of polyps and has recently been referred under the 2 week rule and thankfully got the all clear. So I went to my appointment the clinic was 2 hrs late which I don't mind so much I undestanf how busy it is but when I got I he took a brief history said my dad's situation wasn't relevant as that's what bowels do pressed on my tummy a bit and told me to take senna as at my age it couldn't be anything other than constipation. I am totally beside myself cannot sleep for the back pain and am totally exhausted I am due to see GP on Thursday who is great and obviously took me seriously to refer me but I have no idea what to say and how to get things checked out further I have looked into private colonoscopy but they are 2 grand I could stick it on a cc but don't really have the money and ideas - sorry for the moan just need to get it out and although dh is lovely I think he is a bit fed up with me thinking I am going to.leave him and ds cos I have something seriously wrong with my (I know I sound crazy but I promise I am not just think constantly feeling awful for 6 months has started to make me anxious).

SandwichYum · 01/04/2016 09:48

Hi all have been lurking hope everyone ok. Lozwil sorry to see you still have no answers.
I've had a CT scan showing reduction in tumour size but still have 3 cycles of chemo left and rads. Waiting on consultant appt to discuss rads.

royalmama · 01/04/2016 13:13

Hello all. Lozwill, I am so sorry you are having to wait and outting up with the stress of that. Could your GP help you out more since he is understanding?
Sandwich, that is really promising news re the tumiur shrinking! Soon the chemo and rads will be in the past and pretty much behind you .
Thanks Dinster, leslie and pepper. I have not had any dressings but was given so e soecial cream for the open sores. It looks awful. Is is the areas where there is friction( under arm and underneath the breast) that are worse off. I have just four more sessions to go but .i have been forwarned that it will get worse before it gets any better and tha means even after the rads finish, the skin will take time to heal. I think the sheer number of fractions( sessions) is what is making it qorse, tha and the fact I am not fair skinned and have big breasts. They did tell me even before I started that I was a candidate for some tough SE !
Anyways, i wanted to ask abiut weight gain. All my life
I have never been iverweight and there were times when I was much underweight , but hail in cancer and treatments and I am now quite annoyed at the extra kilos I have put on and the fact I look very much fuller than I ever have been. I read breast cancer patients will always struggle with weight gain because of the treatment. I am not feeling up to exercise to be honest( or is that the voice of laziness?!) i do tend to sit a whole lot more than I move, so it may just be down to that. I find myself feeling bet guilty about this and maye it is time I do something about my weight gain. Thus and I haven't even started Tamoxifen yet!
Would love to hear about your experiences if you care to share.

royalmama · 01/04/2016 13:15

Apologies AGAIN for the endless typs. So ashamed of myself Blush

mumto2andnomore · 01/04/2016 13:47

Pepper yay to clear scan and lowzil pleased that yours was good news too

Lowzil I'm sorry you are anxious and have no clear answers

Royal ask as I had cream then dressings to put over the top to stop it rubbing on my clothes. I've always been overweight but put on even more when I was diagnosed and then through bad eating habits and sitting around when I had chemo. Have lost it again now though and I don't feel that tamoxifen makes any difference to my weight

Cried at this morning today at the tributes to Denise Robertson, another one lost to the bastard cancer :(

royalmama · 01/04/2016 14:02

Yes same here regarding Denise. Such a kind and wise woman. Every time someone dies, I dread that they will add "after a battle with cancer".

mumto2andnomore · 01/04/2016 15:50

Yes and they always say that the person who died never complained about being ill, really ? I'm always morning about it !

mumto2andnomore · 01/04/2016 15:50

Moaning

royalmama · 02/04/2016 06:02

Oh yes we are only fit for "the battle " if we fight and never complain!

Lilymaid · 02/04/2016 09:39

Hello from the grey of the Canaries. Yesterday I was in a forest up a mountain clad in sweatshirt, fleece and goretex jacket! Weather does improve near the coast but I shall be bringing back most of my tube of Factor 50 sun cream!

WhatWouldLeslieKnopeDo · 02/04/2016 11:55

I hope you get more sunshine Lily. We had a uni field trip there a few years back and it was gloriously sunny all week. There was a lady who sat by the hotel pool all day every day rotating herself like a rotisserie chicken Hmm

Though I do remember the mountains were chillier. I ought to be able to tell you all about succession and soil development in the forests, but unfortunately chemo wiped all of that out Grin

I don't watch This Morning so I didn't know who Denise was. I tend to ignore all the stuff people say about someone after they've died. It's like no one can bear to admit that anyone had shortcomings of any sort.

All the bravery stuff is a complete crock of shit. Being brave won't kill cancer cells. They don't care how you feel. If anything, the need to feel brave is harmful. It may prevent people from seeking help and support if they feel they must be positive and brave and can't admit they are struggling.

royal that sounds sore. I hope you can get some dressings. I'm sure someone else had similar, though I might just be thinking of mum. I can't remember much of the year we were having treatment! :)

Sandwich that is excellent news. I hope that it will make the chemo side effects a little more bearable knowing that the tumour is getting a good blasting!

lozwil I'm sorry your appointment was so disappointing after all of this time. I'm glad your dad got the all clear though. Depending on the type and number of polyps, and your dad's age, the consultant is probably correct. As we age the process by which polyps are suppressed becomes less effective, so people are more likely to develop polyps. Most of them come to nothing, but they'll be snipped out if discovered.

I wouldn't recommend paying privately just yet, especially on a credit card. Perhaps follow his advice about the Senna and see if it improves at all. People tend to think of bowel problems as being quite minor, but even something as simple as constipation can cause a lot of discomfort and other problems. There's a good chance that it really is constipation, though obviously there are various more serious conditions that can affect younger people. (Sorry, I can't remember how old you are.)

If the Senna doesn't help, your GP may be able to prescribe more powerful laxative medications. You could have IBS if you have alternating constipation and diarrhoea.

Speak to the GP about how soon you should see an improvement if it is constipation, and what the next steps will be if it does not improve.

Have you tried mebeverine or Buscopan for the pain? My preference would be for mebeverine, but speak to your GP and see what they recommend. Again people tend to underestimate how much bowel cramps can affect you. They can be agonising.

Finally, do you take any probiotics? There's a lot of research going on at the mo into the effect that gut flora can have on bowel conditions and also a whole variety of other conditions. I take Bio Kult capsules, which are available from Boots, but there are quite a few types to choose from now.

I hope you get some relief soon Flowers

pepper good news about your scan. I hope you're feeling a little less overwhelmed today. Your team sound really intense! Others on here have had their ovaries removed so hopefully they can advise.

Waving to everyone. Have a good weekend :)

OP posts:
amberlight · 02/04/2016 18:24

Waving to all.
And agreeing that all the 'brave cancer warrior who never said a complaining word' stuff we get in the media is total utter nonsense.

As we know from research, those who 'battle' cancer tend to do worse than those who treat it as a minor nuisance (even if it's not minor). I've also yet to find a cancer patient who never complained.

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