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February 2019 chemo starters

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Re: February starters 2019 - yes, we rule!

A7BAE3B1-39B1-4B36-B56F-7BAFE7BFCDB6.jpegFD5772E4-F9D2-4F1D-9156-83426EA97287.jpegNigella604C4F65-5D0B-4EA1-8C66-2084FEAE16EA.jpeg216B1EEE-1AFE-4987-B225-3CDEA9DC3B05.jpegE0A6FCC5-E434-4671-B4B7-0328268D58B4.jpegPurple elderflower. No idea what it’s posh name is, it’s a cutting that I took and nurtured on.6C749FDC-627B-493E-B7B7-239FF354BF14.jpegWater lily flowers coming through20B71D54-3E64-4E25-9F1C-C070FE5BEBE4.jpeg5BE4922E-DE7C-4C72-83E3-97EDEF33D790.jpegI trying to ‘rewild’ parts of the garden. Garden needs to get its natural equilibrium back. Previous owners didn’t feed the soil and the farmers roundabout love their sprays. No matter, we’ll win through.72B1FDF6-1057-481F-B72A-7F6F152CE4CC.jpegButtercups. The dragonflies are loving being amongst them.E2A69985-BC0D-4CBA-8CE8-9C8129140C09.jpeg97134452-7026-4830-8823-7711EE0568B6.jpeg

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Re: February starters 2019 - yes, we rule!

Hey lovely ones,

 

Read through and caught up... I think ! 

 

Taxotere seems like a proper  bundle of laughs .. not. I wasn’t looking forward to weekly Taxol that I have but although the weekly  regime has its drawbacks I’m grateful not to be experiencing the side effects that you guys are having with Taxotere.

 

The one thing that I hadn’t anticipated on a weekly regime is the psychological adjustment. It seems like there’s a very short window available when you can stop thinking about being a bc patient. With a three weekly regime you could get some downtime.Anyway, whatever our regime we’re slowly but surely making our way through this bc quagmire and we’re winning.

 

 

Ive had 3 sessions of Taxol and I’ve another 6 to go. Then I have a break for a month and then I start rads for 5 weeks. Don’t know what the treatment regime is for that here but I’m due to see a radiologist so no doubt all will be revealed. Not looking forward to the topless bit among strangers but as you say Sarah, how else would they deliver such targeted therapy effectively. 

 

They’re don’t seem to go a bundle on patient dignity here. When I went for my heart scan this man who did the initial intake told me to remove all clothing from my top half and didn’t offer me anything to cover up.Don't know why but I instinctively felt something wasn’t right with him so even though my other half was with me I tried as best as I could to make sure he didn’t see much. From the look on his face I knew I made the right decision.Then after a little wait the cardiologist walked in and I had to uncover. Felt very undignified.Thankfully, Mr Creep wasn’t in the room too.

 

I see that some of us are struggling with moods and very understandably periods of high anxiety.

Over here , there’s a psychologist attached to the oncology team if patients want to see him/ her is it worth asking your respective oncology teams if there’s a similar service available for patients? Even if there aren’t any individual sessions available there may be group sessions where you can get together with other bc patients and talk through issues.Do  Macmillan offer any kind of talking therapy sessions?

 

On the subject of moods, I know it’s been an emotional rollercoaster for us ,what’s it been like for your partners/ loved ones? Have they said anything or are they trying to put on a ‘brave ‘face too?My other half had a bit of an outburst on Friday which is making me pause for thought.  There’s a carers forum on here that he might benefit from but apart emailing and reading online news he doesn’t ‘do’ any IT/ social media stuff and also I guess he’d feel hampered if he thought I might read what he wrote.

Conundrums, conundrums. 

 

 

Audiobooks, love them. I tend to listen while I’m crafting or decorating. I’ve tried it while gardening but that didn’t work out too well especially when I have to shift things. ! I started a book group here. Mainly to meet like-minded readers. I’m not into chick-lit or romances so I knew the only way to have a group for the kind of literature that I’m into is to start my own. It’s been an experience! That said I’ve got a core group now who are on the same vibe as me so that’s great. Seriously , thinking about starting an online book group so if any fellow readers are interested let me know.

 

Some pics for you. By the way SusieB , you and your hubby are justly proud of your garden, what a lovely space.And your wisteria looks wondrous, I’m jealous. Ive got two I’ve grown from seed , they’ll probably be about 18” high in 2025🤣

 

Hope that everyone is having a reasonably restful day.

xxA140E8F8-8ED8-49E7-AD4F-0C6A452803CA.jpegAllium754497B4-0215-4903-92AB-4CC3302640F8.jpegDFAFAC52-8B9C-4FD4-9266-AAB7CEAFA44F.jpegValerianECA965FB-71C8-4FCE-AD6F-B6F2231EB81C.jpegBorage & bees. Self seeded, I leave it as the bees love it.

 

 

 

 

 

 

 

 

Member

Re: February starters 2019 - yes, we rule!

Morning everyone

 

Hope we are all feeling as well as can be expected

 

I woke up this morning, looked in the mirror and got a shock, I looked like a murder victim, dried blood all over my face and pillow from what looks like a rather spectacular night time nosebleed.  Thanks T! Smiley Happy

 

I've decided that, what with the nosebleeds and my lovely skinhead hairdo, I'm basically Eleven from Stranger Things Smiley Happy
img_7698.jpg

 

BUT that aside ....this time 3 weeks ago I was on my way to the hospital with a temp of 38.2, this morning it is 37.1 and I ain't going NOWHERE Smiley Happy woohoo!

 

Still feel weak as a kitten/achey all over/ generally cack, but I'm happy as larry sat at home on my own sofa watching Line of Duty.  Fingers crossed I can remain out of the danger zone.

 

Rosina - thanks for all the detailed info about the art therapy stuff.  That is really helpful.  I'm still trying to work out how I can find a way to help with it on a part time/part qualified basis.....  if it is generally administered strictly 1:1 then that might be tricky.  I kind of want to find someone doing group art therapy so that I can just be a kind of classroom assistant....    I am definitely going to go to that one day workshop in September if I am well enough and I guess I can ask them there how best to proceed.    Also I would rather work with adults than traumatised kids..... I don't think I would feel comfortable having that much responsibility!  Either cancer patients or maybe domestic abuse survivors....   lots to think about....  I just want to "pay back" into society a little.  Funny how a brush with mortality changes your priorities!

 

Sonia my last chemo is due for the day before yours.  We are getting there!

 

Nettie sorry you are hitting that rotten stage of the cycle.  Hopefully it won't last too long.  I am almost nostalgic for FEC now that T is so much horrider!  But I think I got away with a lot on FEC, I know it is a lot worse for some of you than I had it.  

 

You sound like me with sports.....  I hate to see the other team getting a total thrashing even if it means that my team wins!  I remember my pal's hubby having a right go at me once as we were watching our team dish out a 12-0 victory against the Telford Tigers.  I said "I wish Telford would just score one goal", and he immediately declared me a "fake fan" who doesn't understand how hockey works.  Smiley Happy

 

Lovemama,  sounds like you have really been through the wars Smiley Sad  but great news that side effects are now clearing up and you are on your way back to your old self.  I appreciate you giving us a bit of a timetable expectation, as I think we are all hoping to bounce right back to our old "normal" as soon as treatment ends, but of course that isn't realistic! 

 

I'm hoping to at least feel a bit more like me by the start of 2020, but I have accepted that 2019 is a bit of a write off!

 

Edinbird, looks like you did a bit of a "count your blessings" exercise this morning.  Always a good idea.  I also am grateful that, although the treatment has not been remotely fun, at least it is available to us for free, and it is working to make us better.  We will all come through this stronger.  Eventually!   

 

And as you say, in between the horrid bits, we have mostly managed to have some fun, days out, nice walks, even trips to France! 

 

And great news about your pal's benefits and counselling... it is difficult when you care about someone who the system appears to be letting down....  a relief for you there.  It isn't as if you don't have enough to worry about already of your own!

 

Oh and I can't sit down in my shower cubicle eitherSmiley Happy  it is tiny! 

 

Daisydi enjoy the readybrek steroid glow Smiley Happy

 

Sarah x

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Re: February starters 2019 - yes, we rule!

Morning all, jjust taken steroids so looking forward to a nice healthy glow.  Here we go again ....

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Re: February starters 2019 - yes, we rule!

Hi Edinbird, 

I sit in the bath. Shower is set to warm ( not hot) I stand at the far end of tub as the water always starts off cold and move in once water is warm and sit down.

I only get up once I have finished and switch shower off.

Hope this helps 🌼

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Re: February starters 2019 - yes, we rule!

Rosina the good shower is in the en-suite in a cubicle so I can just about sit down but it’s very awkward. Have a shower over the bath in the main bathroom, it’s not like that one is dreadful but it’s not as good. When I have a shower I have it on hot to wash my body - turn it down to wash my hair - turn it down again to condition my hair. I’d have to be up and down to keep adjusting it and it’s tricky when there’s not much space. I don’t think my joints would like it! I could try the bath one, it’s not like it’s too much faff to adjust until I have the right temperature. I could sit on the edge of the bath but that’s not too comfy.

 

I probably need to wash my hair it was Tuesday when I last did, I’ve been so sweaty it’s rather revolting! No one can see under my hat but when what pokes out is all stuck together and greasy too I feel a right mess in public!

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Re: February starters 2019 - yes, we rule!

Edinbird, Good Morning 

“Might reward myself with a shower (tho that involves standing up so will have to think about that...)”

just wondering : can’t you sit down in the shower? I have done so on many occasions ( both now and before bc ) just make sure the shower curtain is well placed and that the water can flow down the drain. I angle the shower handle so that the water hits my back between the shoulders. 

Hugs,

Rosina

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Re: February starters 2019 - yes, we rule!

Morning xx going to get in early whilst I’m not feeling too bad!

 

Crappy nights sleep more sweats and was just wide awake at one point so I got up and had tea and toast! This extra weight is no way coming off! 😂 legs still sore and slight headache actually but I don’t feel too bad in myself. Think I will try for the shopping later and that will be my effort to be normal today. Might reward myself with a shower (tho that involves standing up so will have to think about that...)

 

Feeling happy tho as

 

Weather looks nicer today 😊

Bestie found out his benefits are being increased not cut! We were so worried he was losing out. Not that I want him to be considered more sick but it’s a proper reflection of his situation so better all round

His counselling that we thought was being cut because he’s struggling (yeah that makes sense) isn’t so again more stuff I don’t have to worry about when Barry is being Barry

Won the lotto!! I got a free lucky dip 🙌🏻😂 haven’t won a thing for ages so that’s good!

 

A few of us seem to be having treatment early next week, it must be stressful waiting for it when several of us seem to be suffering from ours... I’m thinking I can’t wait for my last cycle but I don’t want to feel like this again! Wish I was back on FEC... but FEC wasn’t zapping the little bugger that well. If T has been killing all the good cells and not really getting the bad ones I will be most annoyed! Laying here having a good poke and prod and nipple fiddle... no point stressing as it’s not clear cut but less than 3 weeks to my scan won’t really give the third T much chance to work... they must know what they’re doing.

 

All the nurses were very positive in hospital and two said they wouldn’t even know about my hair (was wearing a headband) and one still said it looked ok when I took the band off!! Yeah I’ve ended up admitted twice but I keep saying how I’ve never felt or been sick. I’ve had a sore throat, constipation, diarrhoea, felt dizzy, a cold. Just normal things everyone gets. These aches aren’t normal and neither is the hair loss but that’s ok, I suppose I still feel like chemo hasn’t kicked me in the butt too much. And then I feel bad for everyone who has had to stop early, who has been delayed, who has been stuck in hospitals for days in a cupboard or not.

 

Flip side... Everyone who has managed to do loads of exercise and eat well, everyone who has gone on holiday!! We are all getting by and the bad bits we get through together and the good bits help us get through the bad bits. Flowers and art and music and food. And lots and lots of poop and blood and other Barry stuff.

 

We are all wonderful 💕

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Re: February starters 2019 - yes, we rule!

3F400DD5-A457-4F0C-A4B9-7DC5F79E0294.pngToday’s message

 

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Re: February starters 2019 - yes, we rule!

Hi DaisyD, Marlyn, Susie B, thanks so much for your virtual hug. It really helped me to calm.

Not a surprise to me, I got almost all the side effects in the list. The bisphosphonate Zometa had turned me to a  zombie for 1 whole week. Stiffed and heavy legs, headache, sore muscle in legs and arms, watery eyes. Took 3-4 Tylenol (Panadol in UK?) every day and finally yesterday, all symptoms suddenly disappeared.

11 weeks after my last dose of 3-weekly Paclitaxel. My finger tips still couldn't feel the hot and cold. Still blurred vision. (Remember when having EC in 2011, my onco told me my vision prescription should be able to reverse after chemo and it did.). This time, the chemo nurse told me to be patience, some people took a year to recover. My hair started to grow when cycle 5 (out of 8). 20 weeks now, about 1 inch.

3 weekly paclitaxel is as toxic as 3 weekly docetaxel or maybe more. But a recent research is showing docetaxel is more effective than pacltaxel. The research was printed at end of 2018 which was after my chemo started  8-(

https://news.cancerconnect.com/breast-cancer/taxotere-confirmed-more-effective-than-taxol-for-metast...

 

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Re: February starters 2019 - yes, we rule!

AB84FB55-C4CD-4A0B-98D2-F47E69A7DF33.jpeg

Hi my gorgeous ones. I’m managing to keep up with your posts but am in full steroid comedown/wbc build up this weekend and feel pretty poop. Barrying hate FEC but from what I’ve read would be hating T more. So sad you are suffering on it girlies. I’m sending you all a cuddle. Hopefully back with you in better form soon. On the plus side, I managed to drag myself downstairs to watch my team win the FA cup. Felt so sorry for Watford though as the goals kept going in. Xxx

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Re: February starters 2019 - yes, we rule!

Hello All,

catching up on all the posts.

1) Implausible your posts make me laugh. I have never thought of you as being sarcastic! I am now referring to T as ‘horse tranquiliser ‘ to family and friends. Re. the art therapy my sessions are 1-1 and I really get a lot out of it. My H1 thought that I was painting a ‘still life’ each time I went ( he would ask me what did you paint today ? ) another friend asked if she could come and watch and a colleague at school  made an off the cuff remark and said ‘does that mean you sob while you paint ?’ which shows how little is known out there about what art therapy is ( my colleague- senior to me I may add should have known better- I think she was trying to keep the conversation light and amusing!!!).

 I knew nothing about art therapy when I started but I have always liked to paint and draw ( I ended up doing an art A level in a year, during my 2nd year of teaching when I signed up for an art evening class and the tutor talked me into it 🤪 got a ‘C’ grade ).

My art therapist is a ‘transpersonal’ counsellor. We usually start with a chat about my week, or how I feel, or why I was late ( this happened last week 😬) anything really and I have the option to use watercolour , chalk or pastels. I lead the session and I feel totally in control. One 2 occasions I have been gently guided to notice something in my creation and then we talk about it.

There is no object or idea that I aim to paint it’s more about the colours and patterns that evolve during the session and we discuss them afterwards. I find it fascinating.

 In my most recent session my therapist said that talking isn’t necessary at all , as the art acts as the ‘expression ‘ . I could immediately see how children would benefit from this.

 I have found that I ‘reflect ‘ a lot on what evolves.

The link to the course you shared looks fascinating. If I were you I would go.

 I did also attended a group workshop ( there were 4 of us) lead by the same therapist which also gave insight to myself.

 2) Re. the food and cheese in particular it was Ayurvedic Lady who told me soft white cheeses only ( low oestrogen content as I am ER+), regular medics have not banned anything food wise . All they said was ‘no scientific evidence to link anything in one’s diet to breast cancer ‘. I just kept reading around. I love Stilton and had a bit. H1 advises me to ‘listen to my body ‘ and eat whatever I want but he draws a line at any flesh as he is vegetarian ( did that fish want to die ? did you think about it’s life blah blah).

What else, my Mum, smoked ( not heavy) , drinks in moderation, ate whatever she wanted ( never dieted in her life) never took vitamins, doesn’t pop pills ( a good thing as thalidomide was offered to her for morning sickness way back 😱) she thinks that my disease is due to stress and the mad pace of life that is considered ‘normal’ these days.

We have had this tune on tap today:

Music to keep you calm

as we both hate being told what to do 😬

Good night, sleep tight 🙃

 

 

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Re: February starters 2019 - yes, we rule!

Edinbird, I’m  just behind you, My last T will be on the 5th June, no date for radiotherapy as yet. 

I wont be having anymore scans so my oncologist told me last week. Not sure how I feel about that. 

Possibly on meds for 6 months before ovaries out, and unsure on reconstruction date. 

Im like you implausible I like to know what’s going on and when( control freak in me). I feel that’s what I’ve lost control of most with Barry!!

 

currently haven’t got up to much today, very lazy and lots of aches and pains. Currently having a nice hot flush, not looking forward to more of theses. 

 

My heart goes out to you Sandra watching your child in pain is the worse, hopefully someone can help out💕

 

We are nearly through stage one ladies we can do this 💪

 

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Re: February starters 2019 - yes, we rule!

Implausible/Sarah, she needs a turn around, she will feel better, it was to much, cancer/mastectomy/my own illness/unemployment/financial issues... I keep telling her that she is my hero, nobody can cope with all of this at the same time!

 

So glad you are better, I am sure that it will keep like this.

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Re: February starters 2019 - yes, we rule!

Hi Edinbird 

my  last T is 7th june do I’m still behind ya! When my temp is either fly high or really cold I give myself 2 hours to try and regulate which helps - currently having hot flush the joys but I feel better than last time - try for a reduction if you can. Had my mri and they said it should look at my  lymph nodes should get my results in 2 wks then appt for surgeon after last T. 

 

Onwards and upwards you are nearly there  keep strong ❤️❤️

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Re: February starters 2019 - yes, we rule!

Smiley Sad  there must be something that they could prescribe to at least help V a little?  Beta blockers maybe?  They are supposed to be safer/milder? 

 

In better news, happy to report that my temp is now safely back in the happy range.  Phew!

 

I don't want to go back inside!!! Smiley Very Happy

 

 

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Re: February starters 2019 - yes, we rule!


@Implausible wrote:

You will all be delighted to hear that I have now showered and changed!  My household have taken the pegs off their noses Smiley Happy

Although don't ever let me go to prison as I dropped the soap about 20 times!!!

 

Sandra.....  is it time for a visit to the GP to get V some medication for her anxiety/depression??  It sounds to me like she could do with a little help there, and it seems that a few of our ladies on the forum have found that little extra medical nudge to be helpful.....

 

As I kind of touched on earlier, I am lucky really that I tend to be able to keep- if not upbeat - fairly chill most of the time when it comes to mental state/moods.   I occasionally feel a bit fed up when I am under the weather , like today.  But never for long and never too negatively.   My mantra for the bad bits is "come on Sarah, rest up and wait it out".... and that seems to be enough to keep me in fairly good spirits.

 

It must be absolutely unbearable to have not only the physical symptoms to deal with but also strong moods/anxieties/ depression.  If it happened to me I'd like to think that I would be asking the GP to throw everything they can at that just as they would a physical symptom. 

 

Please reassure her at least that she is not alone and we are all rooting for her.  And hopefully the further she gets from her last chemo, the better she will start to feel x

 

Marlyn.... apparently I don't have to be tattooed for the rads, so the lady on the phone said.  But I have no idea why not.  Surely everyone has to?  I guess I will find out more when I get there!  Am hoping they can fit me in the day after my next T dose before the steroids wear off and the side effects hit me....

 

 



@Implausible wrote:

You will all be delighted to hear that I have now showered and changed!  My household have taken the pegs off their noses Smiley Happy

Although don't ever let me go to prison as I dropped the soap about 20 times!!!

 

Sandra.....  is it time for a visit to the GP to get V some medication for her anxiety/depression??  It sounds to me like she could do with a little help there, and it seems that a few of our ladies on the forum have found that little extra medical nudge to be helpful.....

 

As I kind of touched on earlier, I am lucky really that I tend to be able to keep- if not upbeat - fairly chill most of the time when it comes to mental state/moods.   I occasionally feel a bit fed up when I am under the weather , like today.  But never for long and never too negatively.   My mantra for the bad bits is "come on Sarah, rest up and wait it out".... and that seems to be enough to keep me in fairly good spirits.

 

It must be absolutely unbearable to have not only the physical symptoms to deal with but also strong moods/anxieties/ depression.  If it happened to me I'd like to think that I would be asking the GP to throw everything they can at that just as they would a physical symptom. 

 

Please reassure her at least that she is not alone and we are all rooting for her.  And hopefully the further she gets from her last chemo, the better she will start to feel x


Sarah, medication for anxiety or depression is a no-no for her. We have spoken many times with her neurologist about this, and it have a negative impact in her situation related to her migraines.

Brains are really annoying!

I think that a therapy using pattern modification would be the best for her, but... she has to want it, and I completely understand when she says that she has enough on her plate for now.

Funny, I use the same method you use to surpass situations. I was a depressive person all my life, but my external behaviour is completely different. Nobody would peg me for a person with such nightmarish thoughts Smiley Happy

MBJ
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Re: February starters 2019 - yes, we rule!

Hi. girls

Just seen this on FB thought it was appropriate for all of us. IMG_20190518_180803.jpg

 

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Re: February starters 2019 - yes, we rule!


@MBJ wrote:

Hi Daisydi

I completely understand your worry about recurrence. I think we will all find that nag that seems to only relate to us as individuals. For you it's the number of lymph nodes that's your demon. Mine is stopping the chemotherapy treatment, especially when I read about those that have had big reductions. I worry that these few weeks I have enjoyed when all you girls have been suffering will not last. When I read all of your posts I feel I have not suffered enough to ensure it stays away. All ilogical know but there it is in black and white. 

But enough of that I am off to the party. 

Will catch up with everyone tomorrow. Xx


MBJ, Veronica asked me to tell you that she is feeling exactly how you are feeling, she says that is really the same!

MBJ
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Re: February starters 2019 - yes, we rule!

Hi Daisydi

I completely understand your worry about recurrence. I think we will all find that nag that seems to only relate to us as individuals. For you it's the number of lymph nodes that's your demon. Mine is stopping the chemotherapy treatment, especially when I read about those that have had big reductions. I worry that these few weeks I have enjoyed when all you girls have been suffering will not last. When I read all of your posts I feel I have not suffered enough to ensure it stays away. All ilogical know but there it is in black and white. 

But enough of that I am off to the party. 

Will catch up with everyone tomorrow. Xx

Member

Re: February starters 2019 - yes, we rule!

You will all be delighted to hear that I have now showered and changed!  My household have taken the pegs off their noses Smiley Happy

Although don't ever let me go to prison as I dropped the soap about 20 times!!!

 

Sandra.....  is it time for a visit to the GP to get V some medication for her anxiety/depression??  It sounds to me like she could do with a little help there, and it seems that a few of our ladies on the forum have found that little extra medical nudge to be helpful.....

 

As I kind of touched on earlier, I am lucky really that I tend to be able to keep- if not upbeat - fairly chill most of the time when it comes to mental state/moods.   I occasionally feel a bit fed up when I am under the weather , like today.  But never for long and never too negatively.   My mantra for the bad bits is "come on Sarah, rest up and wait it out".... and that seems to be enough to keep me in fairly good spirits.

 

The only time I got properly upset was the other week when I thought they would never let me out of the hospital! 

 

It must be absolutely unbearable to have not only the physical symptoms to deal with but also strong moods/anxieties/ depression.  If it happened to me I'd like to think that I would be asking the GP to throw everything they can at that just as they would a physical symptom. 

 

Please reassure her at least that she is not alone and we are all rooting for her.  And hopefully the further she gets from her last chemo, the better she will start to feel x

 

Marlyn.... apparently I don't have to be tattooed for the rads, so the lady on the phone said.  But I have no idea why not.  Surely everyone has to?  I guess I will find out more when I get there!  Am hoping they can fit me in the day after my next T dose before the steroids wear off and the side effects hit me....

 

 

 

Edinbird.... it wasnt actual raw blue cheese, it was dressing from a bottle , so hopefully pasteurized.  And I only had a tiny bit....  will avoid the rest Smiley Happy

 

My temp is now over the limit but I'm hoping that is from the hot shower.  Trying not to panic and will test it again in 20 mins or so....

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Re: February starters 2019 - yes, we rule!

Hi all 👋🏻 

 

Today has consisted of variously getting up, cooking, eating, sweating lots then going back to bed... getting restless legs so then getting up and starting the cycle again... pretty dull. Temperature came down overnight, was so worried about it given how much I keep getting so hot. But the discharge letter said watch for feeling unwell, being hot and sweaty isn’t unwell so I stayed calm and did manage to sleep a bit and it was normal this morning. Still blowing my nose a bit but it’s not troubling me too much.

 

Tried to have a doze this afternoon but the legs are just too achy. Getting bored again now. Waiting for husband to make dinner but he was out at his American Football tournament all day and wants to sit down. Fair enough! I’m not hungry but eating would be a distraction.

 

Blue cheese is definitely off limits Sarah! It’s full of mould! But then again I’m on penicillin maybe I could try some... better not 😝

 

I was worried about mayonnaise at first but any stuff you buy in a jar is heat treated so that’s fine. Sainsbury’s has started teasing me about cheese I’ve had vouchers for blue cheese and Brie and I wonder if I can use them if the cheese has long enough dates... my chemo helpline card says you need to monitor things for 6 weeks after last chemo but I don’t know if there’s a safe date for reintroducing the banned foods?

 

I now have more dates so hoping that things start to slot into place...

 

Last T 3rd June

Mammogram and ultrasound 6th June

Breast clinic 11th June (wonder if this is surgeon?)

Oncologist 14th June

 

So the only thing I think I’m missing is CT scan to check the lung node. Unless you guys can tell me of any other appointments I should expect ahead of surgery?

 

I was first on the T but now I feel really far behind again as lots of talk about radiotherapy. I’ll get there with you all xx

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Re: February starters 2019 - yes, we rule!


@Marlyn wrote:

Sandra, I really do understand what V is going through...we all do.....my coping mechanism is a dark humour, I'd be constantly crying otherwise....is V down for the LGFG course? I think it would do her the world of good. When does her rads start? Little by little bit by bit things will get a little easier, after all she isn't long out of chemo, we think we're going to bounce back immediately, it's a shock when we don't! 

How does she react when you read out our posts? I hope she understands we're all in it together, she isn't alone...not for a moment.....give her a cwtch from me? I'd be more than happy to chat to her ....in her own time.....xxxxx


Marlyn, I try as much as possible to read everything and she knows you all, but she keeps saying that she doesn't want to know more because she cannot stand to know that you (and everyone here) is suffering.

It really hurts her!

It is more than what she has suffered (and still is) from chemo, it is the Damocles' sword because she believes that her lungs have cancer because she has a cough, that it will be back, that life is horrendous, etc.

It doesn't help her situation: she loved to be back on studies, but she cannot continue with her PhD because it wasn't her choice and it is horrendous, she doesn't have a job and she is really tied up.

My fault, really, I should be in a good position to take her somewhere else, to start in a new environment, to freed her from this dark feeling.

She is at home all day with her thoughts, it is not helpful at all.

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Re: February starters 2019 - yes, we rule!


@daisydi wrote:

No I have not gone vegan but I think mayo is on the naughty list due to raw eggs and I accidentally had some a while back and it made me feel sick (mind you I felt sick most of the time on FEC).  Im so confused with the cheeses too.  I know blue cheese is bad but I thought other soft cheeses were ok and then I read somewhere else to avoid feta, goat and sheeps cheese so I am completely lost.  Just sticking to cheddar and mozzarella for now.  Yes I am still on for Monday and I am so so wary.  They are extending my wbc injections and all my trouble started when I started doing them but maybe also coincided with stopping the steroids too.  Its funny how we all react so differently to things. 

 

Daisy, homemade mayo is not safe because we make it from raw eggs, but all the mayo we buy is safe because the process kills all the bacteria.

Soft cheeses and cheese from goat, sheep, etc, are extremely dangerous, not only because of bacteria and fungus spores, but also because they can carry brucelosis (even though we have security measures whilst preparing them, there is still the risk)

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Re: February starters 2019 - yes, we rule!

Sandra, I really do understand what V is going through...we all do.....my coping mechanism is a dark humour, I'd be constantly crying otherwise....is V down for the LGFG course? I think it would do her the world of good. When does her rads start? Little by little bit by bit things will get a little easier, after all she isn't long out of chemo, we think we're going to bounce back immediately, it's a shock when we don't! 

How does she react when you read out our posts? I hope she understands we're all in it together, she isn't alone...not for a moment.....give her a cwtch from me? I'd be more than happy to chat to her ....in her own time.....xxxxx

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Re: February starters 2019 - yes, we rule!


@Edinbird wrote:

I’m home! A week of antibiotics although no particular infection found as yet. Just feel tired now.

 

The weather is lovely that’s the annoying thing but I think I’m better in the cool whilst I’m still worrying about my temperature.

 

All I want is dates! And news and updates. I wish I knew what was happening to me when. I’m just stuck idling whilst I wait and I’m no good at that. I want a timetable and to be able to plan. Let’s all swap shall we?!

 

Probably fall asleep for a bit before dinner 😴


Oh honey, things have been really difficult for you!

I am so sorry!

Please try to rest, it is so important now!

HeartHeartHeartHeartHeartHeart

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Re: February starters 2019 - yes, we rule!

Good to hear from you Implausible.  I really worry when I dont see any posts. Ridiculous I know but I am a bit of a worrier of late! No I have not gone vegan but I think mayo is on the naughty list due to raw eggs and I accidentally had some a while back and it made me feel sick (mind you I felt sick most of the time on FEC).  Im so confused with the cheeses too.  I know blue cheese is bad but I thought other soft cheeses were ok and then I read somewhere else to avoid feta, goat and sheeps cheese so I am completely lost.  Just sticking to cheddar and mozzarella for now.  Yes I am still on for Monday and I am so so wary.  They are extending my wbc injections and all my trouble started when I started doing them but maybe also coincided with stopping the steroids too.  Its funny how we all react so differently to things.  I didnt get any terrible pain last time only headaches and my legs felt like lead for a couple of days and now I feel better than I ever did on FEC.  I completely forget to take my temp most of the time but when I do it is usally 36. something.  Take care of yourself.  Even when I was neutropenic last time my temp was normal and it only showed up in a blood test.  My radiotherapy starts in July too and finishes mid August.  Im already panicking about how I will keep my neck covered up and how hot I will be and I wont be able to swim in the sea to cool down.  I am also starting to worry about recurrence (I know I shouldnt but I keep reading stuff about having 4 positive nodes and there is such a jump from 3 that it really worries me).  So all in all having a bit of a meltdown at the moment but I blame it on the T!  Having an Indian takeaway tonight, Yummy!! 

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Re: February starters 2019 - yes, we rule!


@Rosina wrote:

Hi Daisydi,

dose #5 is Thursday 23rd of May ( assuming blood test is ok on Monday).

Apologies if I bored people to death re. My eating habits but the worry of developing lymphodema in my right arm  ( I am right handed) keeps me on the straight and narrow and again the biggest risk factor seems to be piling on the pounds. I don’t want to ever have to wear a compression sleeve!!!!

 

 


Rosina,you are never boring and we pick up excellent tips for you.

We are really worried about the dreadful lymphodema, V tries to be really careful but it is not easy when she is sleeping.

Her sleep disorders can cause havoc during the night and she can end up sleeping with her left arm (the one from the mastectomy) under her which is a no-no.

I keep waking up and checking on her!

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Re: February starters 2019 - yes, we rule!

Implausible, I thought you might be suffering, it really does suck big time.....I can't imagine how you will cope being measured and tattooed while on your first week of T.....it really is a faff about....I cancelled hospital appointments if they were in my first week of fec, there's no way I could manage anything much in that first week and you sound the same on T .....bear in mind they need you to keep very still during the proceedings, with lots of manhandling.....

 

now go and shower lol xxxxx

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Re: February starters 2019 - yes, we rule!

Hi girls, whenever I blink there is so much to read!!

I am trying to keep in check, it looks like a tv series, I keep asking to myself 'who said that?' 'what happened here?'

OK, V is still feeling too low, my major concern is her depression, she is a bit on the low side, keeps wanting to speak about what happened during her surgery, everything that went wrong, everything that can go wrong in the future, chemo or no chemo (no guaranties either way), she is extremely afraid.

I am trying to tell her that she has now to look forward, try to be positive, but she isn't able to do so.

She feels that her life ended (her words) and, as much as I can find the words and the arguments, it never worked with her and it never will.

Although we have several ways of seeking support, like Talking Changes, Disability Support or even this org by phone, she doesn't want to speak with anyone, the only person that she wanted to speak was someone from this forum (I was so surprised) but she disguises quite well, nobody can see her reality.

Hair related: I had a tip for a very good shampoo that many people are using after chemo, especially those who are or will be using Zolatex and Letrozole, because both cause thinning of the hair.

It is Grow Me, I have bought it for Veronica, as he lost all her hair right on the first cycle and we can see something coming out now.

I will keep you posted.

Now, can you help me dealing with her situation?

What do you do to surpass agony and negative thoughts? 

How can I help without being stupid?

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Re: February starters 2019 - yes, we rule!

Here is the link for the art therapy course:

 

https://www.baat.org/Courses-Conferences/338/South-West-Introduction-to-the-Profession-of-Art-Therap...

 

It does look good but it is a lot of money (£100) for something that I might not be able to progress anyway....

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Re: February starters 2019 - yes, we rule!

Hi all

 

Apologies I've been quiet.  I have been pretty much dead to the world today and yesterday, either in bed or conked out on the sofa.  Must be starting to hum by now as I have been lying around in the same jamas since Thursday!

 

I've just taken a codeine tablet as everything aches like hell, and will attempt a shower and change of clothes once that kicks in.  Don't want the neighbours complaining Smiley Happy

 

This part of the T cycle really is the absolute pits.  I can't concentrate on anything for long so can't really enjoy TV or books or podcasts.... just find myself zoning out and realising I have no idea what the character just said etc.

 

I tried to stack the dishwasher and got totally out of breath in minutes.  It really does suck!

 

All my pals are living it large at a big annual event in Bristol today that usually I would go to.  So I am torturing myself a bit looking at all their fun photos :/ which is silly really.

 

Just need to wait this out.  And hope that I dont end up in hospital again (I'm panicking about that possibility.... temp so far today has been borderline, around 37.4 ....)

 

Anyway, enough of my whinging!!

 

Marlyn I didn't realise you had to lie there topless like a reclining page 3 model for rads!  Although I guess it makes sense really, I guess they aren't going to laser through your top....  I hope it wasn't too embarrassing lying there ages all exposed while they faffed about.   Very annoying though that after all that they couldn't go ahead.  Hope they get their act together better next time.

 

I got a call from the radiotherapy place in Oxford yesterday.  Apparently they want me to go in the first week of June for a "positional not diagnostic" CT scan to get me set up for rads starting in July.
I pointed out that I will most likely be feeling like utter turd that week as once again it will be the first week of my T cycle and she was "oh don't worry we will send a car to collect you". Last thing I want is to have to have a CT scan miles away on a day when I am feeling horrendous, lift or no lift. 

I will wait for the actual date and time to come through and argue the toss if necessary.

 

Love the t shirt by the way!  And as for "dark humour", I think it is near enough essential to get us through difficult times.  You have to laugh or else you cry, as the old saying goes.  I've definitely been making some fairly insensitive jokes at my own expense since this whole cancer thing reared its head....

 

Seaside.... I hope you had fun at your choir meet.  And enjoyed the pizza.   Mmmmmmmmmmm piiiiiizzaaaaaa Smiley Happy 

 

Which reminds me, Rosina, honestly I wasn't being sarcastic when I said that your healthy eating and walking etc is inspirational.  I really meant it!!!  I wish I could stomach decent food at the moment, I really do.  But carbs and cheese seem to be the only things hitting the spot (and, thankfully, fruit still works).  I can't wait until I start to feel a bit more normal and can get back to a much healthier regime and lose some of this blubber....

 

Edinbird I'm glad you weren't stuck in the hospital for too long.  Hopefully you have had a nice restful recovery day at home....

 

Trixielady, here's to more good days than rotten ones!

 

Susie you and I are so different, I desperately want to know *exactly* when everything else is going to happen, dates and times and so on, so I can plan around them..... but my docs are so vague!!!!   I guess we all deal with these things in different ways.   I hope that they can leave you in the dark a little longer as per your preferences.....

 

I'm also glad that those of you with anxiety about all this (and who wouldn't???  I sometimes worry that I'm not worrying enough!  Given that it clearly is something worth worrying about! Maybe I'm just in denial....) are getting some help with medication to take the edge off the worry. 

 

Daisydi have you gone vegan and I missed it?  Or is "normal" mayo on our no-no food list?  I had some blue cheese dressing the other day and immediately wondered if I was supposed to be avoiding that...probably am....oops!   Having been a veggie since I was 15 I'm always incredibly blasė about food poisoning and stuff like that, considering it more of a worry for the meat and shellfish eating types.....  I really should pay more attention.  For example I didn't realise until the other day when Edinbird mentioned it that we aren't supposed to eat brie or camembert while undergoing chemo.....

 

MBJ I hope you have fun at the birthday do tonight Smiley Happy

 

Rosina.... your art therapy thing.... is that 1 to 1 or more of a group thing?  I think I mentioned before that I am really interested in the field of art therapy and would love to maybe volunteer as some kind of teaching assistant one day a week to help a qualified therapist as I wouldn't be looking to totally change career at this point in my life....  but I would love to find a way to "do my bit" once I'm through treatment.  I have found a one day "intro to art therapy" course in Southampton in September that I might attend....  but it seems more geared to working with troubled children than adults.  And more in a 1 to 1 capacity.   Nobody in Swindon seems to offer it at all so there is no-one for me to offer my volunteer hours to..... 

I will have to keep looking into it....

 

It actually sounds like the local bird population have been doing some "art therapy" on your car! Smiley Very Happy

 

Deano I'm glad you got a little reduction in your dose and that all went well yesterday.  Here is hoping you have an easier ride this cycle.

 

Daisy, hope it goes easier for you too this time.... are you still on for Monday?

 

Phew that has taken me hours to type!!!! 

Take care everyone xx

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Re: February starters 2019 - yes, we rule!

Hello all,

 I am in line for the Tesco car wash and it has started to rain 🤪

the car was covered in bird poop and it was the last chore out of many completed today.

Yes to seeing the silly side of things 👍👍👍👍

Mum is having a mani/pedi ( dropped her off prior to coming here) she has got an umbrella and sandals to walk back in. 

I think we are all certifiable 🤪

The rain is coming down heavy so it’s going to be a double cleanse!!!

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Re: February starters 2019 - yes, we rule!

Hi everyone 

Marlyn and sonia28, we both have a fairly dark sense if humour too. Paul's is typical forces humour. My mum would be horrified if she knew about the kind of things that make us laugh, but if you can't see the funny side of certain tragic events or circumstances you'd just crack. 

Deano, glad to hear your last lot of T was at a reduced amount and hope things will be better for you. Have you just got one round left? I'm losing the plot a little bit as to where everyone is with their chemo.

Daisydi, I hope the meds for your next round are ok. I wonder sometimes if the oncs are just as much in the dark as we are sometimes when it comes to dealing with side effects. With so much being thrown at us how can they tell what is doing what to us🤔? 

As for me I'm not doing too badly, but anxiety about up coming surgery is starting to get to me. The mornings are the worst  so I pop a propranol (bete blocker for anxiety) first thing to get me through. I'm sure as time goes by I'll be back up to the 2 a day I was on between diagnosis and 1st day of chemo. At the moment I'm trying to get cross and angry with Gremlim, the same as I was before chemo, because I reached a sense of calm once treatment started and keep hoping the same will happen as I reach the point of surgery and Gremlim and his offspring finally gets his marching orders and barrys off!  

Hope everyone else is ok. It's all very quiet at the moment but I am aware that several of you have been through the mill during the week and are having some well earned rest🛌🏾. This bc lark really is the Barrying pits. Take care xxxxxxxx  

 

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Re: February starters 2019 - yes, we rule!

We have a bit of a dark  sense of humour in our household, I think it shocked a few people when I was first diagnosed, but as you say it’s what gets you through, xxx

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Re: February starters 2019 - yes, we rule!

Sonia, 

its my humour that's got me through all this horrible stuff, but it can be quite dark at times and I have to remember what company I'm in as not everybody feels the same...but I feel safe here as I think we all understand and are on the same wave length.....if anything my humour has got darker since cancer! Hope your doing ok? Xxxx

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Re: February starters 2019 - yes, we rule!


@Marlyn wrote:

Susie,

hubby got it for me ( as a surprise) he said it was from one of the breast cancer adverts that came up on Facebook...always gets smiles when I wear it out! You doing ok? Xxxx



I love your sense of humour Marilyn, and your t-shirts are the best xx 

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Re: February starters 2019 - yes, we rule!

Susie,

hubby got it for me ( as a surprise) he said it was from one of the breast cancer adverts that came up on Facebook...always gets smiles when I wear it out! You doing ok? Xxxx

Member

Re: February starters 2019 - yes, we rule!

Hi Deano, glad that you are feeling ok so far.   I too am convinced that it was the injections I reacted to last time but my onco team say it was the T.  They are giving me more injections this time so god knows what will happen.  I am dreading it!

Hope everyone else is ok.  Thinking of you all xx

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Re: February starters 2019 - yes, we rule!

Hi all

glad you enjoyed the poem I got back late yesterday from treatment and had a 90 percent reduction and so far so good at last I’ll keep you all posted as it was the injections that knocked me last time with T. also got vodeone on case joints ache as well so we’ll see. Hope everyone keeps healthy for their treatment- come on the end is near for some of us and in a few weeks we’ll have forgot how bad it was when we have good days especially xxx

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Re: February starters 2019 - yes, we rule!

Marlyn, where did you get that tee shirt? It's brilliant☺  

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Re: February starters 2019 - yes, we rule!

Hi Daisydi,

dose #5 is Thursday 23rd of May ( assuming blood test is ok on Monday).

Apologies if I bored people to death re. My eating habits but the worry of developing lymphodema in my right arm  ( I am right handed) keeps me on the straight and narrow and again the biggest risk factor seems to be piling on the pounds. I don’t want to ever have to wear a compression sleeve!!!!

Edinbird , glad you are home.

Podcasts are great for distracting yourself especially when tired,  lots to choose from. The ‘Calm App’ also does ‘sleep stories’ , I haven’t listened to any though. I prefer Women’s Hour, The Life Scientific, The Infinite Monkey Cage , The Now Show and The News Quiz.

Marlyn your story is bonkers but funny.

Art therapy was all chat today ( no art) but I feel that I needed to take stock of where I am at.

Mum says one thing and then does the complete opposite. I offered to drive her back into town to go into specsavers (to pay for these glasses she has bought ) and she seems to have legged it.

H1 has escaped to London.

They are both excellent candidates for me to put all my meditation practice into action 🤪 i.e develop awareness of how irritating they can be, then breath and smile 😊 

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Re: February starters 2019 - yes, we rule!

So glad your back home....now behave and rest....eat.....take your meds....sleep.....xxxx

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Re: February starters 2019 - yes, we rule!

I’m home! A week of antibiotics although no particular infection found as yet. Just feel tired now.

 

The weather is lovely that’s the annoying thing but I think I’m better in the cool whilst I’m still worrying about my temperature.

 

All I want is dates! And news and updates. I wish I knew what was happening to me when. I’m just stuck idling whilst I wait and I’m no good at that. I want a timetable and to be able to plan. Let’s all swap shall we?!

 

Probably fall asleep for a bit before dinner 😴

MBJ
Member

Re: February starters 2019 - yes, we rule!

Hi Girls

Sorry to read some of you are having rough days. Edinbird I hope you are home or will be soon. 

I am sure you must have been really fed up Marlyn it would be bad enough anyway without all that messing about. 

Deano I love your poem, I am having a cwtch under a blanket watching TV I must remember I need to rest as well as rushing about with Rock Choir, slimming world, going out for meals and shopping. Recharge of my batteries needed as we are going to a 70 birthday party tomorrow night. 

Hope you will all have a restful afternoon. Weather here is colder and ☁️.

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Re: February starters 2019 - yes, we rule!

It’s been a little drizzly here in Stafford, not much sun at all today. 

Sonia I am totally with you on not getting too much info and dates up front when I’m mid treatment. I find it much easier to cope with stuff on a daily basis. I’ve been on Prozac since the middle of January (only the smallest dosage) but I know I would not have coped with any of this if I hadn’t, especially those terrifying first few weeks. I know it won’t be for ever. Sometimes you just got to take what’s on offer to get you through. I hate taking any meds unless I’m in dire need usually but chemo is a different kettle of fish. 

Edinbird, I hope you get home soon and continue to improve. Keep an eye on things though eh? We all have poop days when we have nothing positive to report and they are just as important as the good days to hear about. That’s what we are about isn’t it, here for each other through everything.

Marlyn, how’s you temp? You might have said and I missed it. 

Love you all. Everyone of you in my thoughts. Deano let us know how you got on if you are up to it please. Xx

 

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Re: February starters 2019 - yes, we rule!

Afternoon all,there is never a dull moment on this thread is there?  Hope you are feeling better Marlyn and Seaside.  Sonia and Sarah hope your bad days are not too bad. Edinbird hope they have now let you out. Have a rest and look after yourself for a change.  Susie its very miserable and dull in Norfolk too. Drizzling and depressing! Have been to hospital for bloods so will wait and see if its all go for Monday.  Really really not looking forward to it.  Trixielady hope your day isnt too bad and Deano hope all goes well today.  Rosina when is your number 5?  Got to take these pesky dogs out now in the drizzle and cold.  I actually went to a supermarket today for the first time in ages.  Usually do it online. Quite enjoyed browsing and I got some vegan mayonnaise which I am really pleased about as I miss a bit of wet stuff on my salads.  Speak to you all later.  xxxx

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Re: February starters 2019 - yes, we rule!

Hi everyone 

Oh dear what a terrible time some of you are having at the moment☹.

Edinbird I hope you escape soon and get a chance to rest and recover over the weekend. Don't feel bad about talking about your rubbish day, that's what we're here for, to listen. By the way how come you've got the sunshine☀️, we could do with some of it down here in a rather cool and cloudy Somerset🌫🌫. Oh I see Devon have got the sunshine too, come on girls share it around a bit more, please.

Marlyn sorry you had such a 💩 day yesterday and yet you still manage to let your wicked sense of humour shine through🤣. It's funny, until a few years ago I would happily go topless on the beach, not in the UK though, it's too cold, but in your situation I'd be mortified. Here's me thinking rads were just a case of lay there and think of England then pick up your dignity on the way out.

On the helpful/unhelpful sons and friends perhaps we should swap. I often get reports on how kind and helpful Chris is from his friends' mothers. 

As for me I had a call from the hospital regarding my upcoming surgery and final pre-op chat. When she told me she had a date for me I had to stop her in her tracks and explain I didn't want to know the date just yet. She probably thinks I'm mad or crazy. Anyway I'm having all the pre- op talk next Friday so I'm going to have to be brave and find out the date then. I simply don't want to know just yet as otherwise I'll simply dwell on it. Stupid or what!? I'm trying not to stress about it, but I started to take my anxiety meds the other day, all be it, just one not two tablets a day, just so that I can keep my nerves under some kind of control. Eeeeeeeek!😭. 

Anyway hope all of you that have had a 💩 time of it recently soon get sorted and feel better. Take care all of you. Love you to bits❤❤❤❤❤❤  

 

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Re: February starters 2019 - yes, we rule!

Apologies if I have already posted this? And how do I get it to post the right way round???? Arrrrggg!!!!

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Re: February starters 2019 - yes, we rule!

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