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Anyone due to start chemo April 14??

rosie14
Member

Re: Anyone due to start chemo April 14??

Kirstie glad you are feeling a little better! x

Jackie09
Member

Re: Anyone due to start chemo April 14??

Oh Kirstie, I'm so sorry about your accident. That would be just like me too - to brave a trip out and end up regretting it. Big hugs x x
Kirstie77
Member

Re: Anyone due to start chemo April 14??

Hi all, thank you.

I'm feeling much better today, the leg is still very sore but my friend had moved in for a few days to help me and I was working from home today so that was a distraction. My bloods are back up so that's good means less chance of an infection so good news :0)

I hope that everyone else is okay xx
Lovewine
Member

Re: Anyone due to start chemo April 14??

Hi Kirstie, hope today has been a little better for you, hope you are being spoilt - you certainly deserve to be!! X
Louise3721
Member

Re: Anyone due to start chemo April 14??

Hi Kirstie hope today is fabulous for you. Get a good book and a drink of choice and be happy xx
Tlj63
Member

Re: Anyone due to start chemo April 14??

Kirstie, hope you are feeling a little more positive this morning. You have had a really bad few weeks. Let's hope your leg heals quickly and you start to feel perkier soon. You certainly deserve to have few good days. Chin up, summer is coming.
Kirstie77
Member

Re: Anyone due to start chemo April 14??

Thanks so much ladies x onwards and upwards, tomorrow is another day and I will get back on track, it will just me more of a hobble rather than a step at a time :0)

Louise3721
Member

Re: Anyone due to start chemo April 14??

Hi Kirstie its all a bit shxt really so have a blooming good rant then cry then carry on because after all lets get busy living. When I was first diagnosed people kept saying oh well you are very tough you will cope Well guess what some days I don't and some days I throw my hands in the air and yell why me? But every day I promise myself that I will survive this and I will do all the things I have been putting off.

I asked my consultant what my prognosis was basically how long I have to live. She said say I said 70% chance of people with your type and grade live for 10 years how does it help? You don't know if u are in the 70% or 30%. So no one comes with the knowledge of how long we have and cancer makes u realise that you should not waste your time and energy on negative thoughts or negative people surround yourself with love friends and family. I also find that swearing helps!
Smokeclouds
Member

Re: Anyone due to start chemo April 14??

Kirstie, you're just where I was last weekend when a series of things all conspired together to make me meltdown. I'm not a crier either usually and I'm sick of crying now.
Just remember there is an end to the chemo & gradually you will feel better. A week ago I was all for stopping my treatment & now I'm back to my usual F it attitude and back on fighting form x
Kirstie77
Member

Re: Anyone due to start chemo April 14??

Thanks ladies, I think just admitting it to you all helped a little, I am normally the strong one, hubby is now tidying the house like his life depends on it, bless him he is trying x. Thank you all its just the frustration coming out.

Thank goodness for this forum eh ladies x

I hope you ladies enjoy today xx
Lovewine
Member

Re: Anyone due to start chemo April 14??

Dear Kirstie, I feel for you today, it's such a setback after trying to get out more, it's hard to put on a brave face when you feel like screaming and crying, I totally agree with other ladies our families are used to us being the strong ones, so can't deal with it when we cry or find it hard to cope, am thinking of you today, x
joan47
Member

Re: Anyone due to start chemo April 14??

Dear Kirstie. I am so, so sorry about your accident, particularly since you were already having to steel yourself to go out. When I read your first message this morning my initial reaction was to try and joke and suggest it should be your son who is confined to barracks, not you. But to be in pain and on antibiotics again after everything you went through first time is just so unfair, I really feel for you. I'm not in the least surprised it's got on top of you. I guess most of us try to put on a brave face in front of others, even our nearest and dearest but sometimes it's just not possible, and- big generalisation here- I think men often find it hard to cope with tears; they want to do something to solve the problem and don't understand that you just want sympathy and a cuddle. I hope you start to feel better soon, both physically and emotionally.
rosie14
Member

Re: Anyone due to start chemo April 14??

Oh Kirstie poor you of course its enough to tip you over the edge it would be the same for anyone of us! When my car wouldn't start last week I thought the end of the world had come!!! Your husband and friends aren't used to seeing you breaking down but quite honestly you have got such a lot on your plate at the moment- I wonder what they would be like if it was them. I said to my husband its a good job I have the cancer, he would just sleep and watch TV all day. Take each day as it comes and hopefully you wont feel so sore tomorrow! x
Kirstie77
Member

Re: Anyone due to start chemo April 14??

Hi ladies, it's really sore this morning I can't walk on it properly at all I'm having to crawl up the stairs and I can't stop crying, I feel like its just tipped me over the edge, I have hardly cried at all this whole process and now I'm so frustrated that this is supposed to be my good week and I can't do anything again, I've just had enough of it all and I'm fed up of putting a smile on my face. I'm sure ill snap out of it but it just feels like one thing after another, I don't know about making me stronger I think it's trying to break me. Sorry this probably sounds stupid to put on here, but my husband can't deal with me crying and even if in the same room pretends I'm not and I think my friends would panic if they saw me like this as don't do this.

The drugs I am on after are chemo are
Ondansetron
Emend
Dexamethasone

They also give me Domperidone as a just in case one to take as and when for after the 3 days, but I haven't taken any of those.

Wildpurl
Member

Re: Anyone due to start chemo April 14??

Kirstie, so sorry your outing ended that way! And I do hope you are starting to feel better now.
I agree that it is essential to have some things to look forward to in the "good" weeks! I like to enjoy eating good food and drinking a little wine once things taste normal again, go for a good walk, do some gardening! meet up with a friend, just simple things but it's what I enjoy. We are also planning to have a holiday in August or September, once I have had some time to recover, and although we haven't planned anything yet it helps to have that to look forward to.

I am not looking forward to round 3, but for me it will be my last FEC and half way through, so I'll be holding onto that thought.

My anti sickness meds are ondansetron, domperidone and dexamethasone (steroids). I take various combinations for 3 days and they seem to work pretty well. Ondansetron tastes of vanilla, and that caused me to feel weird when I ate a vanilla yogurt over the weekend!
Lovewine
Member

Re: Anyone due to start chemo April 14??

Hi everyone, hope you are not too sore today Kirstie? And great idea to plan a treat every cycle- we all need something to look forward to! My elderly aunt has offered to pay for a holiday down to fowey in Cornwall at the end of all my treatment for me and hubby ( we go every year and love it but couldn't plan it this summer) so it's so nice to focus on something nice.
Eam28 I felt even more sick on metaclopramide on my first fec, I was also told it is a really cheap, nasty drug, I was changed to Emend, cyclizine and ondamestron on 2 nd fec and a massive improvement- wasn't sick , felt a bit sick but copable!!
Hope everyone has the sunshine today which we have here, going to put my sun hat on my very bald head and walk over fields with my 2 dogs! Xxx
rosie14
Member

Re: Anyone due to start chemo April 14??

Good morning ladies ! It is vital to have something to look forward to on good days. Do you find you associate certain clothes and foods with feeling rubbish! I can't wear certain things because I wore them at the hospital and they make me feel sick looking at them!!
A colleague asked if she could come and see me on Saturday to keep me company as my husband has to be at the school open day. Thursday is my session 4 day and Saturday is my really bad day. I said she could come for an hour but needs to realise that I will be feeling sick and tired!!! I am really hoping to go on to 3 weekly cycles when they start Herceptin on round 5!
EAM your support group sound like a very good idea. That is the one thing I miss out on here as there are no support groups for just breast cancer, if there are they would Greek speaking!!! so this board and of course my dear family are a lifeline to me. xx
EAM28
Member

Re: Anyone due to start chemo April 14??

Hi ladies,
Went to support group of young women with BC today & was good:). All at different stages so quite interesting to hear each story & experiences. They also had '2nd chemo blues' but like we keep reminding ourselves it can be done! They meet up once a month & is 15 miles away from me but its worth it & find out so much that my BC nurse should have told me! Is anyone else on metaclopramide anti sickness tablets? I'm doing a bit of research into all the tablets I'm on ready for next round as don't want to feel like a zombie/druggy going cold turkey again:( & I think that is the 'evil' drug as apparently its really cheap.
I really hope you can get the single injection for next round joan47! Sounds blooming horrible for you! I'm bald on the back of my head & sides - reminds me of one of my old school teachers!
Omg kirstie77! Can not believe that!,hope your OK,bet your son feels awful!
Glad everyone seems to be doing well & enjoying bank hol . like louise3721 says - its good to have a little treat when your feeling well. Went for fish & chips in the sunshine tonight. That will do me until after fec3! Xxx
Kirstie77
Member

Re: Anyone due to start chemo April 14??

That is a really good idea Louise, I have to say feeling really deflated x I will bounce back though, once I can walk unaided lol
Louise3721
Member

Re: Anyone due to start chemo April 14??

Don't be put off though Kirstie as I had fab day out at Whitby yesterday you have to have something to look forward to. My hubby and I have decided that after every chemotherapy session when I am on way back to normal we will have a treat. Either a day out or nice meal.Maybe then I will associate feeling so crap with lovely times xx
Kirstie77
Member

Re: Anyone due to start chemo April 14??

Louise I know you couldn't write it ! I'm thinking of moving to Albert square or coronation street I'm sure I'd fit right in !

Glad your back okay wildpurl x
Hugs to everyone, tomorrow's another day :0)

rosie14
Member

Re: Anyone due to start chemo April 14??

Oh gosh Kirstie I am so sorry what rotten luck!!!
Wildpurl glad everything went as well as it could have at the funeral
Good on you Lovewine, getting out a bit makes you feel more normal!
Lovewine
Member

Re: Anyone due to start chemo April 14??

Oh that's awful - yes your luck definitely not on your side! Maybe a glass of wine in your own garden tomorrow would be safer! Hope it heals up quickly, xx
Louise3721
Member

Re: Anyone due to start chemo April 14??

So sorry to hear of your injury but have to admit gave me a little chuckle too I mean you can't get less extreme than stroll to the pub! My advice is don't buy a lottery ticketreally your luck is not in xx
Kirstie77
Member

Re: Anyone due to start chemo April 14??

Well so much for being braver ! I went for a walk to the local pub with my son and husband, it was lovely - son on his bike sat in the pub garden had a lovely glass of wine and a nice gentle stroll home, it was perfect......

..., until my son rides up behind me shouts excuse me, I move to the left he goes left and floors me, I have the most serious gash on my leg, I wish I could show a picture, trip to a and e, 7 stitches later and antibiotics for the next 7 days - I'm staying in !!!!
Wildpurl
Member

Re: Anyone due to start chemo April 14??

Evening everyone, I am safely back from Glasgow and my MILs funeral. The journey up went fine, we left at 4.00 am which I was nervous about coping with but as it was Day 7 I was feeling pretty normal, and had water and snacks and slept a bit, we were there before I knew it. The time passed very quickly and I did need to go to bed quite early each day as there was a lot to do and it was quite tiring, but I managed a few walks, went out to dinner and bought some new clothes. The funeral of course was very sad, but I am glad I went with my OH as it was lovely to spend time with his immediate family and to support them a bit.

I'm knackered now LOL! But nothing to do this evening and a Bank Hol tomorrow, hope to get into the garden and get on with more weeding, plus I have loads of summer and autumn bulbs to plant. I feel that I have been eating junk food for the last four days and now I am feeling more back to normal it will be good to go back to eating more normal food.

Next week I have an appointment with my wig lady who is also a hairdresser. I got through the funeral with my very thin hair, but no one was really interested in me or my hair so I wasn't too worried. I have decided to get a wig for work, though, as I don't want to have to keep answering questions, and I have asked her to look at trimming my remaining hair a bit to make it look a bit neater. If that looks OK I will stick without a wig when I am not working. And see what happens...

I hope you are all enjoying your Bank Holiday weekends and gradually feeling better.

Wildpurl x
rosie14
Member

Re: Anyone due to start chemo April 14??

Evening everyone. I have been away for a couple of days. It took me a week to get over round 3! I managed a G & T and some wine over the weekend and it didn't taste like acid!! Hope you are all well and enjoy the bank holiday we had bank holiday on Thursday in Cyprus.
I wore the wig for the first time over the weekend. I am going to keep it for evenings out only its getting too warm here for all these things I am having to wear on my head!!! x
Lovewine
Member

Re: Anyone due to start chemo April 14??

Hi ladies', i have also been really cautious over going out etc, but over last 2 days have decided to be braver and even queued in argos!! Haven't really been shopping etc since chemo began so desperate to get out to shops!
Even went to garden centre too, don't know his I will cope with the excitement of it all! I just used loads of hand gel and also wore a lightweight scarf around neck and if I thought anyone looked full of germs I pulled it up over mouth and nose.
I have also been on 5 day injections which hubby has done , I found I had bone aches on first day , but after that they went, actual injections I dreaded, but as Louise said they are quite quick and think of something else! I have heard lots of ladies have used piriton and said it helps, I just found neurofen was ok on first day.
Enjoy rest of bank holiday everyone.
Louise3721
Member

Re: Anyone due to start chemo April 14??

Hi ladies don't know if this will help but I am a type 1 diabetic and inject into my stomach 4/5 times a day so I am quite an authority on it. The trick is to think about something else so get your needle ready I pinch the skin up between thumb and finger push needle in and think about shopping list etc its the brain that stops you and frightens u. Some people count some sing whatever floats your boat really.

As a diabetic you have increased risk to infection so I was told to avoid all day buffets and salad bars as they have higher risk of food poisoning carry anti bacteria gel and just take sensible precautions like telling friends not to come round until 48 hours after infection or being in contact with anyone with infection
Try not to worry xx
Kirstie77
Member

Re: Anyone due to start chemo April 14??

Hi Jackie - Glad I'm not the only cautious one I am going to try to be a bit braver now though, I hope your feeling back on track soon, my BCN told me that each one will make us more tired we just have to listen to our bodies and go with the flow I suppose x

Who knew there was all the extra stuff we would have to think about x

Hope everyone else is doing okay ;0)
Jackie09
Member

Re: Anyone due to start chemo April 14??

Hello everyone,

I've just had my second round on Thursday and I think it's taking a little longer to get over than the first.
Re issues with mouth problems - a lot of ladies recommend difflam - can get it on prescription from docs or if that is too harsh biotene mouth wash - both have worked for me.
As I was admitted to hospital with neutropenia I'm on the gcsf (or whatever they are!) injections for 5 days - and not looking forward to,them in the least. Anyone any advice? I've read on another thread piriton can help?
Re wigs and itchy scalps - I've seen on some sites like Anna bandanna or surburban turban some elasticated wig caps that are supposed to help with that.
I'm also being ultra cautious re going out - in fact, I've only been to my hospital appointments and 1 shopping trip in 3 weeks. But I suppose you could say look where that got me. So feeling a bit stuck at the moment.

Hope you all have a positive day
Love and hugs x x
Kirstie77
Member

Re: Anyone due to start chemo April 14??

Hi Joan,

Ask for the injection I have it, though I am private, the bone pain for me it's not too bad rather like bad period pain in my lower back. You won't have lost anything y asking and considering you have the other injections too they should consider it xx good luck x

Top tip re Toni and Guy , I need one of my wigs trimming but I'm not sure ill wear earthier of them, my hair is s haved to a number 2 but is patchy now.....

joan47
Member

Re: Anyone due to start chemo April 14??

OK. relieved my last post did get through. I do find this group so helpful I would really miss the contact. The only face to face support group near to me is monthly, in an evening and 15 miles away..
Re wigs, I'm glad that some of you have got something you like although it seems wrong if you have had to pay - my NHS trust pays for them, that should be universal, especially given the financial impact of having cancer treatment. I am also sorry to hear about the lady whose hairdresser was unhelpful. Again I feel so fortunate, mine couldn't have been more helpful. I think that is partly personal, but also the salon was originally in the Toni and guy chain and they have long had a policy of offering a free wig trimming service for cancer patients. I am pleased with the look of my wig but still find it horribly itchy even with the cotton skull cap. Ditto the rather nice velvet cap I got cheap from the shop at the oncology centre, looks good but drives me mad. Anyone else got that problem or have any suggestions? Lost nearly all my hair on my head now and think my eyebrows are starting to go. Annoyingly I still have hairy elbows!
My other minor grouse is having to do the white cell booster injections (Zarzio) every day for 7 days on top of the daily blood thinner injections I will have to give myself for months because of a blood clot. I really dread it and wondering whether to ask my oncologist if I could have a single one. I know it's possible and that my hospital used to do it. But stopped because it was too expensive. But my doctor daughter also found some research suggesting that bone pain, which I know some forum members have experienced, was more likely with the single injection.

Sorry not to respond to individual postings, I got too far behind and am too concerned that this will not get through to risk bringing up the messages.
Kirstie77
Member

Re: Anyone due to start chemo April 14??

Must of had a technical hitch on the site, someone's probably turned it off and back on again :0) that normal fixes everything it doesn't it.....
joan47
Member

Re: Anyone due to start chemo April 14??

Kirsty, I haven't been able to post for a couple of days, it just got stuck. And this morning it rejected my sign in, Said my user name isn't registered. Gone in through different route and seems OK. Anyone else had these problems?
Kirstie77
Member

Re: Anyone due to start chemo April 14??

Oh okay it's working - must of been me lol ! :0)
Kirstie77
Member

Re: Anyone due to start chemo April 14??

I replied to a post yesterday but it didn't show up, this is a test one as there are no other post either ......
EAM28
Member

Re: Anyone due to start chemo April 14??

Evening all,
Been playing & long walk with little girl with my sister & two little nieces - blooming knackered now! Every joint aches!
I had really sore throat & mouth,then big ulcer on first FEC from day 4 & lasted about 3\4days. It hasn't happened this time touch wood so the mouthwash must work! Pineapple juice,bonjella & lozenges helped also.
Yeah the finance side of things isn't good is it! Don't need the extra stress do we! My bcn told me to take 8months off work so have been on SSP since end if Feb which is a max of 28 weeks so hoping I'll be ready to go bk begin of sept if not I suppose ive got annual leave that I haven't been there to take! My hubby went self employed just before I was DX so struggling a bit whilst he builds the business up. I managed to do the same as kirstie77 though & got a Macmillan grant - it came through today! 300 to help with chiuldcare & travel expenses to Hosp.
I hope my wig is as nice as yours love wine & loulou1262:) Its only an NHS one so about 65 quid but have been waiting 4 wks for it to come! (My hairdressers have been crap with the whole thing!) So hoping its here before next wkend as going out sat night.
I'm going to a little support group of young mums with & had BC on Sunday so hoping that'l be helpful & get me through the next 4 chemos! Xxx

Louise3721
Member

Re: Anyone due to start chemo April 14??

Hi ladies top tip if unsure like me if you want one or not I went to the Macmillan support in the hospital and booked the looking good feeling better course. They have Lots of donated wigs they even had a real hair one that cost the donor £800 i have a foxy little number that is much better than my own hair. They fitted it told me about care etc all asked for was donation. They also have tons of hats and bandanas once I am finished I will donate them back

Lovely weather for the weekend seaside here I come x
Lovewine
Member

Re: Anyone due to start chemo April 14??

Thanks ladies for sore throat tips: and yes financial situation really is an extra worry we all dont need: that's why I am trying to work through chemo cycles too..
Re: wig situation : I found on day15 of first fec cycle most of my hair came out in my hands whilst washing it: I felt very sad and upset, I put on the wig, which Louise my mum and dad also paid £200.00 for a decent one for me too and I had some very positive comments, an aquaintance in my local co op even said today how nice my hair looked and had I just had it done at hairdressers!! It really made my day.i ordered a couple of very pretty , cotton beanies to wear in the evening and even to sleep in from a great website called hats for heads, happy weekend! X
loulou1262
Member

Re: Anyone due to start chemo April 14??

Evening ladies

 

Lovewine my mouth has been sore so I went to the docs today and she gave me some medication but advised me one of the best things you can do is swill with bicarbonate soda,  upto four times a day. She said its a really good anti inflammatory. The financial side of things are shocking,  I work fulltime and earn a decent wage, I moved from a local authority job two years ago which I had been at for 12 years and had full cover of 12 months sick. Unfortunately in my new position and only 2 years service I only had 3 months sick pay. This is really difficult as where missing about £1600  a month. We do have a small amount of savings but really am concerned about things financially.  Its something you cant imagine happening and because we own our house and my husband works we dont qualify for anything,  unless I can get ESA contribution based. I have therefore chosen to work as much as possible through chemo and just hope I can continue. 

 

By the way ladies if anyone wants any extra support as well as this wonderful site I am a member of a small private FB page if anyone would like to join. The lady who created it dud mention it ages ago but not as many ladies were on the thread. I use both and enjoy having both points of support.  If anyone would like the details just inbox me.

 

Got my wig yesterday for the weekend just incase it all drops, its lovely,  my hubbie and son said its better than my own hair !!! I went for a long one and was really nervous it might look cheap but honestly its great. I paid a bit extra as the cap is lighter and softer, all in it came to £220 , pressie from mum and dad.

 

Hope everyone has a nice weekend.

 

Take care

 

Louise x

Louise3721
Member

Re: Anyone due to start chemo April 14??

Kirstie your situation re finance is pants you would think that as we are working people you could get more help I find it all very upsetting blimey the least they can do is pay you a decent rate. After all once we have all gone thru this it will be a pre existing medical condition and insurance against future loss of earnings will either not be offer or inaffordable However I am speaking to my gas and electric company as i have been told you do get a prepreferential rate if u can prove you are a cancer patient anyone else heard this?

Kirstie77
Member

Re: Anyone due to start chemo April 14??

Smoke clouds I hope you have a great time tonight, I don't do dresses much either I'm sure you will rock it ;0)

Love wine, have you tried gargling with dissolvable paracetamol that should help.

Louise3721, on the finance font I only got 18 days sick and then work paid me an additional 4 weeks as a goodwill gesture, but practically all of that was taken up by the 2 lots of surgery so I was then put on SSP, I earn more than hubby and that left us 2k down a month so SSP doesn't even touch helping to pay all the bills, we took a 2 month morgage break which is done now and I started to work 2 days per week this week to try to help towards the shortfall, im doing mondays and tuesdays as my chemo is on wednesdays.

one thing that s usefull is I went to McMillan to see if they could advise me on benefits, but as my husband works and we don't own our own house we don't get anything !!!!! and to add to that SSP runs out after claiming it for a certain period of time (can't remember what that is, I think it's 6 months).

The McMillan lady was really really helpful and did help me apply for a grant though, the maximum you can get is £300 - it has to be for an item though not bills, she was very helpful and suggested I needed a new bed ;0), they awarded the full £300 and sent a cheque for me to cash.
Lovewine
Member

Re: Anyone due to start chemo April 14??

Thankyou! Hope you enjoy fish and chips at Whitby! X
Louise3721
Member

Re: Anyone due to start chemo April 14??

Get some icepoles too they help x
Lovewine
Member

Re: Anyone due to start chemo April 14??

Louise3721, thanks for the tips. Am going to eat a banana now and send hubby out for pineapple! X
Louise3721
Member

Re: Anyone due to start chemo April 14??

Lovewine so sorry to hear about your throat have u tried fresh pineapple as its natural antiseptic has to be fresh though banana also very good as potassium kills the bacteria. Don't forget don't suffer in silence as these can get infected quick if in doubt ring your emergency number as its bank holiday and tackle it bfore it becomes a problem xx
Lovewine
Member

Re: Anyone due to start chemo April 14??

P.s I am in Leicestershire so not far away from you both.. Am going to see if there is a support group local to me too.
Lovewine
Member

Re: Anyone due to start chemo April 14??

Hi louise3721. Yes I too agree with your worry of financial pressures, I am self employed and run/ran a really busy , successful ironing business which made me a very good living, but no work , no income! - so I am having to work even tho it's now part-time due to financial pressures( mortgage etc are only interested in you keeping up with the payments!) on top of all the other worries it's not easy.
Smoke clouds, you sound like you are having a good day today! Hope the ball goes well and am sure the dress looks great!
I have painful throat ulcers come on today, everything I swallow is like glass, have diffliam but doesn't seem to be helping, hope everyone else has a good weekend as possible!! X
Louise3721
Member

Re: Anyone due to start chemo April 14??

Hi Smokeclouds great news that u have found some good solid support with that group I too am near Derby and may give that a go. Love the idea of the dress think it will be a triumph especially with the boots.

This may be a bit personal ladies but how is every one dealing with the financial imlications ? I work for v small family firm. The contract i have states they only have to pay for 4 weeks sick in a 12 month period then its down to 100 per week ssp . However because i have been there 7 years and made them money they are continuing to pay my normal wage for which I am extremely grateful . However this could change at anytime and since I am in sales it is just my basic without the average £300 per month commission. Obviously there must be some of us out there who have this added financial stress x