Andie,
really sorry on the cooking / baking front lately !!
Haven’t done much only did the hot cross buns cos I promised but really never felt like making them.
Steve made me egg on toast today , it was really nice made a nice change to have something simple for once but Steve has taken over the cooking lately while I get over the dreaded tax.
Went out in the garden today (normally I would start to feel ill today but not today !! ) maybe tomorrow (hopefully not at all?)
love Caronxxx
Firstly, I wanted to say, that although I haven’t followed Dippykate’s thread, I was aware of her and I confess when I was told about her thread was too scared to read it as I knew she was very poorly. Strange then, that I haven’t stopped thinking about her today, My thoughts and prayers however are with her family and friends at this difficult time.
caron, I think TAX SE’s get better the more you have! I swear apart from 3 days of mouth ulcers, that were painful, I had no other SE’s on my last (3rd) TAX, so you never know, you might not get the aches and pains this time!!!
Andie, I have a 25 min drive each way to rads, so I guess I’m lucky really. I’m hoping I’ll be ok to drive myself everyday as my husband really needs to start working again. He’s self employed but since I was diagnosed has had so much time off work to look after the kids and take me to hospital apps etc and this current financial climate, he really needs to get out there and start earning again. I’m sure we’ll be ok though Andie, rads really can’t be as bad as chemo can they (hope I’ve not spoken too soon)!
Gail, have you started Tamoxifen yet?
Shell, what time is your app on 29th? I’ve got physio at 1000, not sure what time rads yet but hopefully we’ll fit in a coffee this time!
Take care Ladies
Jo XX
Hello ladies,
Saturday morning and the weather here is that enticing mix of brilliant sunshine one minute and dark storm clouds the next. It is the weather and sky to look out on whilst sitting by the window at home. Atmospheric and expectant. One minute I have been planning to visit an open garden as part of the National Garden Scheme, and the next minute I am thinking, that it is the kind of day to stay at home and spend time on baking or reading - looking out on the rain that may or may not fall.
But I do feel I must go out to escape the gloomy feelings I seem to be having of late. I seem to cry at the drop of hat. Wish I could stop -but this bc can take me to such dark places, a bit like the centre of those clouds overhead. But I am trying to be happy and optimistic - so going out somewhere - and just selected a town to visit nearby which I’ve never been to before called Norbury - not far from Croydon. I’ll let you know what it’s like later, though I am not sure quite what is there or what sets it apart from other places.
As long as there’s a decent supermarket though that will be enough as I plan on making a steak, ale and onion pie this evening. I feel like comfort food, but will go without pudding as a notional observation of the diet.
Have a good weekend everyone.
Bright x
Hi everyone,
I have been off line for a few days. I have been so busy. Yet another move, I’m still in 7oaks and it is temporary but at least I have my own things around me. Most of my furniture was brought up on Thursday, but John selected what we needed, consequently save my food processors, a toaster, a mixer without attachments that I didn’t wantand a kettle, I have no kitchen equipment whatsoever. No cutlery, crockery, absolutely nothing. It is a question of beg,steal, or borrow. I’m doing quite well, I’ve got a vacuum cleaner tomorrow and some saucepans…MEN!!!
I’m a bit like you Caron, I love cooking but it’s so frustrating not having the usual utensils and improvising. I have been cooking for Veronica and Steve since Thursday.But tonight I took everything up there and cooked for them and their kids. They’ve been so good to me. It’s my way of saying thanks.
Andie, there are Maggie centres around the country. They are purely for cancer patients. They offer all sorts of things, various courses, stress management,counselling etc. On tuesday I’m going to the look good,feel better session. They do your make up etc and generally give you a boost plus I believe lots of freebies. I don’t know about anyone else but I feel my appearance has taken a battering since last July. I hate my hair being so short, I think it’s worse than wearing a wig. Anyway, Maggies is a drop in centre and available to any of us. Its London centre’s patron is Sarah Brown, it has been only been open a year.You might have seen Michelle Obama visiting with Sarah Brown on the news recently. Ihave only heard good things about it. When I went this week they were so kind and helpful. It is based at Charing Cross hospital, which is actually in Hammersmith(Fulham Palace Road). It’s worth looking at their website.
The Look good Feel Better days are also based all around the country not just at Maggies but at lots of hospitals. So if you can girls, take advantage of it.
My new GP is referring me to the local hospice for counselling. I have suffered with depression for many years and with all that has happened wants me to have everything that can help me. I had alook at their website and they offer all sorts of therapies,reiki, music therapy etc. Even manicures!
It really has been a manic few days, I’m exhausted. My highlight this week is when my son in law popped in with my grandson, my little Luke. He’s autistic,I think I told you,I absolutely adore him and I’m enchanted by him. He’s a wonderful dear little boy whom I love so muchI can’t tell you.
I’m hoping to have a quiet day tomorrow, but Veronica is bringing her mum over to see me and wants us to go for lunch with them.
Bright, hope you had a good day in Norbury, I used to live in Croydon and I’ve not been there either.
Jo, hope the rads go ok. Caron, thinkingof you with TAX. Ihated it with a vengeance. My onc suggested I didn’t do the last one as I had felt so ill but I DID it!!
Andie, I look forward to seeing you on Monday.
Sorry if I’ve missed anyone out. My chemo brain is getting worse not better. Has anyone noticed a deterioration in their eyesight or hearing? I’m wearing glasses most of the time now, not just for reading.
Bedtime beckons or do I catch up on my soaps and Britains got Talent?
Night, girls.
Love Kathy
Hi girls,
Well we had a lovely weekend here. Didn’t do much, but managed to get out to lunch in a lovely Oxfordshire village today. Monster was evil though and was put to bed on our return!!
Hope everyone felt well this weekend. I’m OK. After feeling pretty ill on Herceptin this week…I have made recovery. Have been on Tamoxifen for about 2 weeks and so far have hot flushes and insomnia and I’m eating too too much!!!
As usual can’t always remember who said what …
Re: Maggies. I’m doing a stress management course with them. It’s a great service - not available everywhere though! I’m also down to do the makeup - apparently you get great free things!!! It’s somewhere to go and get advice oe even just a cup of tea.
Kathy - I’m sure my eyesight got worse on chemo. Thought it was just me…it feels a bit better now though. Love hearing you talk about Luke…much love there it’s clear!
Bright/Kathy. I’m going to my “nutter doctor” (as I affectionately call him) regularly. Really an oncology nurse turned counsellor and therapist. It is helping with my dark stuff a lot.
Re: Tax. My last one was great (!) - hardly any SEs!!!
Rads - wish mine were starting. feel like I have waited ages. They forget to send my letter out I think. Waiting for my plannign appt. When I met themlast week, they didn’t realise I was so far from surgery. Just want some treatment free time in the Summer.
It’s Monkey Music tomorrow with monster and haven’t been for ages. he gets bored, but I like the songs and the drum!!
Much love all,
Gxxxx
WEll here I am again !
tax SE have not been as bad this time still had some shooting pains but no where near as bad as they was last time.
Yucky mucky mouth is returning to normal now,The main thing this time round is no energy at all, and my legs feel like they have concrete boots on , last night I ventured into the bathroom and nearly fell over twice one of the times I nearly fell in the bath!!
Katemate eyes funny that I have a pair of sunglasses I really like and everytime I get a new prescription I get these glasses done too, now I noticed last week that when I was wearing them that my eyes seemed not to focus right away and sort of made my eyes go wobbly!
It’s the only way I can describe it.
I can’t believe the weekend has gone, where has it gone??
my fingers are getting numb by the day! and I have 2 patches of red on my thumb? not sure what it is looks like dermititis? as it’s a bit itchy too.
my mother has just been and she made me a coffee!! no better than her coffee! even though it was my instant coffee, she asked how many brown sugars did I want? I said 2 please ! TWO she says, it’s really sweet you know!!!
I thought what difference it makes to her? I bought it !! lol
love Caron xx
Caron, good to see you back, was worried you weren’t so good with TAZ SE’s.
Well, had my first Radiotherapy Zap today. Be prepared ladies, 1st appointment seems to be quite a long one, particularly as I had to see Doc in clinic first which i wasn’t prepared for. That delayed me almost an hour, It was only because they hadn’t ticked a box on consent form during our meeting weeks ago. Then you have to run thru lots of other paperwork and of course your dates and times of treatment. They’ve assured me the rest of time it will be a very quick process! I’ll let you know! Didn’t hurt anyway so 1 less thing for me to worry about!
Hope evreyone ok
Jo X
Hi Jo, glad your treatment’s under way, mine starts Wednesday. So apart from the delays, how long did the actual treatment last for? And did they recommend a particular cream to use? x
Hi Jo,
Glad your first rads went ok and didn’t last long.
Cass-there are 3 of us now starting rads on Wednesday. Different hospitals tell you to use different creams. I was told they would give me some aqueous cream when I start.
It will be the last lot of treatment as Tamoxifen, Herceptin etc don’t work on me as my cancer isn’t hormone fuelled. It’ll be odd being “alone” on this journeya.nd I’m quite nervous about it
Andie, I’ll be in touch soon and we can compare notes.
Love to all Kathy
Hi ladis,
I havnt been too well, my scar/ Rads burns have been getting worse. Weeping and spreading all over my chest. last Monday the doctor did a swab of the pus and tonight has telephoned me to say the wounds are infected with MRSA !!!
I have to go see him tomorrow for some medication.
Im so scared, my prognosis was minimum of 6 months but now i have this will it limit my life span???
Has any one else ever had MRSA??
Im worried sick…
Thinking of you all
Shell
xxxx
Oh Shell, you really are going through it. I don’t know the answer to your question. Just to say I’m thinking of you during this time.
Love Kathy
Hi Shell, I am sorry to hear of your most recent setback, Its about time your luck changed and something positive happened.Regarding the MRSA shell, Although you hear lots of bad publicity about this infection,it is not uncommon. the doctor should be able to give you some cream or oinment to treat the mrsa. If your wounds need dressing ,then dressings are available which also treat this infection, the doctor should prescribe these or refer you to the practice/district nure if required. Good luck ,Claire
Shell, My mother in law and sister in law both had mrsa whilst in different hospitals for different op’s but were both sucessfully treated with something? I’ll ask my sister in law tomorrow and might know a bit more when I see you Weds. You still coming down?
Jo XXX
Good evening ladies,
Shell, my best friend’s mother got MRSA in a leg wound and it was eventually cured with antibiotics (ones that the bugs were not resistent to). I am only making an educated guess at best - but I would not imagine the MRSA would impact on your prognosis as it is not cancer but a bacterial infection which can be treated.
Jo, Kathy, Andie - do say how you are getting on with your rads, I have mine starting in about 7 weeks time.
I have not suffered as badly as you Caron - but I am still quite tired about my first tax and don’t quite feel recharged enough for second cycle on Friday. Also think I may be going down with another cold as I have developed a sore throat and cannot stop sneezing.
Have been at work today and managed to get through everything and have a good team to help.
I went to a nice garden yesterday opened as part of the National Garden Scheme. The owner was a botanical artist and there were lots of painterly views in the garden. Sat on a swing chair for ages under an apple tree in blossom. Lots of people in straw hats - all very keen on plants and testing the owner in terms of asking her to name all the unusual varieties of plants.
Best wishes to everyone.
Bright x
Shell Having just read your post re MRSA I wish I lived nearer and could just give you a big Hug. Life really is treating you badly at the moment. As the girls all say, MRSA is treatable and your hospital is on the case.
Bright While I think I got away lightly with Tax it is only now that my energy levels have come back that I realise how tired and lethargic I became while on chemo. With the amount of colds about at the moment and with a compromised immune system it is no wonder that chemo girls are picking up anything they come in contact with. I was surprised to be told by my GP last week that having had cancer and chemo my immune system will never come completely back to what it was. That would explain why the cough I had recently took more that 3 weeks to go away while OH got over his in a matter of days.
Jo Thanks for the info re rads, and glad that you were OK. I start mine tomorrow and will report back. It was interesting to chat with Kathy about the planning that was done for us both. We are being treated at different hospitals and they both do it on completely different machines. Kathy had to keep still for absolutely ages while I only had to keep still for about 20 minutes. My hospital have given me my own brand new gown for the duration of the treatment which I must remember to take with me every time(I can wash it and do whatever I like with it) and then hand back at the end of treatment.
Kathy It was really good to meet up yesterday, and talk to someone who’s thoughts are in exactly the same place as mine. Good luck for tomorrow, I will report back. I expect to have more trouble with the trains than the treatment.
Caron Hope you are feeling OK. Nearly time to start cooking again!! By the way how is Marble these days? Still staying out of trouble I hope.
Love to everyone I have missed out - chemo brain seems to be permanent in my case.
Andie
Good Evening ladies, I wrote earlier but when I submitted the whole lot was lost it was really long as well.
SHELLY Don’t know if I said ( I tend to forget what I have written now!) anyway when I went for my chemo last Wednesday there is a new rule introduced where every patient who has invasive treatment has to have a swan taken for MRSA , the nurses thought it was mad as only the patients are swabbed not the drs or nurses.
MRSA can be really bad as I’m sure you already know that but I think in your case you will be ok as they caught it early , I think it’s usually when left or found too late that it’s bad.
And I’m not a Dr as you all know but I don’t think it will make any odds to your life expectancy, it’s just one more shitty thing for you to cope with!! (sorry for swearing).
Katemate: you are deffo not on your own where as the hormone thing is as SHELLY is deffo hormone - and I still don’t know what I am yet?
I was told I was neg for Progesterone + Oestrogen but still awaiting to be told about HER2.
So don’t feel your on your own we are all together in this even if we are slightly different.
I managed to get washed and dressed today (rather than staying in my pj’s) and I did some washing it took me ages to hang it out as I haven’t been able to stand for long and also getting so out of breathe, never had this before it seems every time there are different SE?? just hit you in different ways,last night when I was going to bed I took my PC upstairs but still had to go back down for my V pillow (as I had been on sofa all day) anyway I had to have a 10 minute rest from going up the stairs!!
Owen said " mum do you want me to take your pillow for you?"
I said " no thankyou Owen it’s only a pillow" !!
I have been upset a few times today as Owen said the other day he needed flour, sugar & marg (for cookery) anyway I did get up this morning to get the kids up for school but I never went down stairs ( I have only ever done that once before and that was also with the chemo)
Anyway when it was 8am I rang downstairs and said " comeon you will miss the bus"
Owen said " I haven’t even had any breakfast yet"
I said " I knew this would happen, get yourself a couple of cereal bars and go"
Then I heard Chloe say " it’s ok now Owen, Owen repeated it’s ok now bye"(he did get some bars by the way ! )
When I did go downstairs I went in the kitchen and there staring at me was a bowl what had obviously had marg in, I then realised what a terrible mother I am as I forgot to get it ready for him, I have only ever forgot once before and that again was while having the chemo for which Owen got told off.
I have seen 4 children through school and never ever forgot before I just think I am letting them down.
So I was crying because of that then I went in the bath and I could hear all this screaming stop it Jordan both Chloe & Owen were laughing but also crying at the same time , you know when someone tickles you , you laugh but sometimes it hurts too.
So I shouted down for Jordan to stop it but the crying/ laughing carried on so I stormed downstairs (in just my towel I might add)
and I told Jordan to go to his room, he insisted he never did anything and they were both laughing, I said no they were not I could hear them, anyway ended up having a big row with Jordan and he went to his room and I went to my room !! crying yet again !!
I wouldn’t mind but he (Jordan) is 6foot3 (nearly 6:4) and he gets carried away , Owen came to see me as did Chloe as I was crying then they told Jordan I was crying then Jordan came to say “what you crying for”
I said " I’m sick of your behaviour lately you never help you sit on your ASS all day long he then said " I just brought the washing in"
I said " yes and I had to bloody bribe you with a box of chocolates"
(he forgot that part!)
So he said " I will help more , I’m not at college next week"
I said " big thrills Ive only been ill for 6 MONTHS !!"
I think I first said at the start of all this that Jordan just seems to think I have a cold.
I don’t want to scare him but when I am gasping for breath as I can’t catch it the last thing I feel like doing is storming down at them and having a slanging match.
GOD I AM SO SORRY FOR MOANING !!!
but this has been my day, also had more BAD news !! about Marc (nephew)
Marc was rushed into hospital on Monday with breathing problems anyway the Drs were going to put him in a side room to see what happens and also if he did die they will not bring him back ( I never thought they would as his life quality is so poor )
The last enjoyment he had was eating but then he got phnumonia twice and they said it was the food he was eating was going into his lungs so he had to be fitted with a tube directly into his stomach, now they have told Cheryl that the feed he has to have is going into his lungs and that is what caused the infection, he has been tube fed for years now.
The Dr has said that even if he makes it this time it will happen again and his heart was only working at 15%, but then Marc showed some signs of improvement so they put him on a high dependancy ward.
But I think it is a waiting game now for him to slip away, he’s only 22 !! life is so unfair he has battled all his life the tumor isn’t linked to his Cerebal palsey ot his heart condition and the same for his heart is not connected in any way and now his feeding thing is also not connected to anything, I asked Cheryl how do you cope??
If it was any of my children it would kill me.
I may go up tomorrow to see Marc, Cheryl sent me a lovely picture of him ( it sounds odd cos he is breathing through a mask ) but I wonder will that be the last picture of him ?? I will treasure it.
Now news on Glenn ( sister inlaws brother who had an anyurism)
He has now been moved to a lower dependancy ward but they still don’t know how he will turn out? his wife told me last week that he has brain damage now (but my bro Paul hadn’t been told this) and she said alot of his brain is diseased at the back of the brain, Ive probably already told you all this I’m probably just repeating and rambling???
ANDIE : Mabs (Marble) she is still doing ok but she has to put some weight back on she is still really thin, she has to have 2 medicines now one is peridale (it’s a laxative and she had this before) and now she has to have liquid parafin (hope it’s not flammable? lol)
I can’t tell you how much we ended up spending as I have now lost count but last time when Steve took her for a follow up we had paid everything up to date and then they said you now owe another £135 for the histology tests on the noduels which turned out to be something that a lot of older cats get and nothing to worry about, so my reckoning is we spent in the region of £ 700/ £800 it may be even a bit more than that?? god are we crackers or what??
I am desperate for a new sofa , but my sofa dosh has gone on Marble !!!.
Oh well it’s only money isn’t it and if I had the choice of doing it all again I would , and I know Steve would too.
Right enough already your probably all asleep by now reading all this?
I have cerioussis (spelt wrong I know) on my hands and I know it is caused by stress (as the dr told me) had to laugh at Victoria when I told her she asked " are you stressed"??? NO NOT MUCH !!! lol
love Caron xxxx
Andie, Kathy, think you start Rads tomorrow, so good luck with those! let me know if the area feels hot when you get blasted? mine does, just momentarily but when I mentioned it to them today, they looked at me as if i was crackers! said they’d never heard of that before so either I’ve imagined it, or i have a very quick hot flush as it happens or i’m in the freaky uniquey minority again!
Shell, will you still be coming down tomorrow? I’ll text you when I’m done!
Bright, hope you’re surviving TAX SE’s.
Caron, poor you! Kids do push you to the limit don’t they but you must never feel like a bad mother coz you’re absolutely not! I’m sure they’ll forgive you forgetting the odd thing for school, you’ve got a good excuse. Sorry about all your family worries!
Nigh night ladies
Jo X
HEY LOOK !!!
anyone for a baby hamper ??? lol (hamster)
Hi
Rads - 1 down 14 to go.
Because I absolutely hate anything new and I hate being late I got to the hospital an hour early this morning.Once we had found where we had to go we were going to creep quietly away for a cup of coffee but the sister in charge insisted that we waited and they fitted me in early. Yet again we have found the staff to be really friendly and helpful. Today was really easy although they informed me that skin problems and tiredness do affect some people as they get further into the treatment.
Sorry Jo I felt nothing at all as they zapped me and I did consiously wait to see if I got warm.
The worst part of this rads part of the treatment is definately going to be the journey there and back. 15 minutes of treatment took 3 hours today. Tomorrow I have to be at Guys in London for rads in the morning and at my own hospital in Kent for a prothesis fitting at 1pm. We are going on the motorbike to ensure a quick getaway. Please all keep your fingers crossed for a dry morning- I do not do motorbikes and rain!!
Kathy I hope you got on OK today with your first rads.
Caron I love the baby hamsters. My girls used to breed them years ago until the local pet shop would not take any more.
Bye for now everyone,
Andie
Good evening Ladies
I had the pleasure of meeting up with Shell again today and she wanted me to let you all know about her day. They drove all the way down to the Marsden for pre trial tests, unfortunately they weren’t able to complete them because of her MRSA. Instead they’ve admitted her into hospital so that she can have antibiotics IV, as it will work much quicker than the oral ones she’s been given. She went back towards home this afternoon so that she could go into her local hospital. Not sure how long she’ll be in for, but hopefully shouldn’t be too long and then she’ll start feeling better! Best of luck Shell. X
Andie, glad to hear your rads went well today and I have to say I didn’t get the hotness this morning! I do feel a bit panicy though once the girls leave the room for the zapping because I always get an itch or need to move slightly then i feel I can’t breath properly as I might move away from all important position and then because i can’t breath properly I feel like I’m going to pass out! I’m a disaster aren’t I? Still it’s all over in a few minutes so musn’t grumble!
Got my ultrasound booked tomorrow after rads to check overies as ct scan showed cysts! Don’t like cysts as that’s what they told me it was in my breast before they decided it was bc!!! so am in a bit of a state about that tomorrow, don’t suppose I’ll know anything until my meeting with ONC though in a few weeks, so that will be a tense time!
Caron, Bright what was the date of the proposed get together again? I,ve forgotten to check?
Night Night Ladies!
Jo X