Glad your op went well but sorry to hear about the cording. Fraid I can help you on the cording as I didn’t have any major problems after mx. I did do the exercises for a couple of weeks but after that I reckoned I got enough exercise just doing general lifting and laying. My OH and daughter are taller than me so things they put away I have to stretch for which I suppose was good exercise. I still feel a little tight when I have to really stretch up but not sure if this is the after-effects of the rads or just a thing I’ll have to live with. Must be honest and say that I didn’t use much cream at all during rads but am now using E45 on the dry and tender parts. Skin not quite broken but looks as if another couple of sessions and it would have been ‘weeping’ in parts. Not particularly painful more of an annoyance.
When you say there were still cancer cells in your breast tissue, do you mean before the op and that the op cleared it. 5 lymph nodes involved is certainly a worry for you, but as you’re still a young woman I’m sure they will keep a good eye on things (if not give them grief). I had 15 of 18 nodes affected but I feel that the nodes were doing their job and keeping the cancer cells from the rest of the body.
I know you worry about your boy – my mother had breast cancer in her thirties and she told me she worried for years about the 3 of us. She knew our dad wouldn’t have looked after us and we would have been in a home, she lived for 30 years plus after her mx (death totally unrelated to cancer). You’ll have good days and bad days but over time the good days will outnumber the bad.
As far as your finances are concerned if you don’t get any help from the Council’s adviser try talking to Macmillan I gather they have people who know about all benefits you are entitled to. It’s ridiculous that they give with one hand and take with the other. This is a time when they should be giving you all the support you need. You’re normally in work and paying into the system but as usual if you don’t know how to ‘play’ the system then you get zilch. You don’t need this on top of all your other worries.
Sorry I’ve not been of much help to you but I hope all goes well with the Council adviser. Take care of yourself.
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Hi ladies, long time since I’ve been on. Hope you’ve all recovered from Christmas and looking forward to the New Year celebrations.
Had my final rads treatment last Friday, absolutely soopa, five weeks of dragging to the hospital every day was a real pain. Getting there and back on the tube was a bit of a nightmare what with the build up to Christmas, horrendous traffic and packed trains as most of my appointments seemed to be in the rush hour – but hey ho I survived. Rads not too bad, skin just starting to break down over the last couple of sessions but radiographer didn’t seem particularly concerned.
Started taking the anastrazole (arimidex) today, should have started yesterday but I was meeting an old friend last night and thought I would treat myself to a couple of drinks, didn’t want to think about possible side-effects so just delayed pills for a day.
Don’t have to go back to hospital until mid-February! I have 3 appointment cards, all with the same date, same time but with different people (oncologist, radiotherapy chap and surgeon) neat trick eh what! I’ll just get there early for my appointment and let them sort it out.
I’m looking forward to the New Year now that treatment has finished, I hope to be able to get back to some sort of normality – house needs a good (and I mean good) clean, so as soon as the celebrations are over I will start at the top and work my way down, that will take me to at least Spring, then I’ll start on the outside and get someone in to make the place look as if it’s actually lived in and not derelict. OH not fit to do it and I didn’t give a ‘monkeys’ when I was on chemo.
Have a good New Year and I wish you all good health and happiness.
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Jellytot - so sorry to hear your OH has been made redundant - sometimes life has a real go at breaking your spirit. I hope he's not out of work for too long and that you can get on with your plans without worry.
Sian - I glad your mastectomy went well. Funnily enoough I had those pains in my back - and damn painful they are, it felt as if they had left a scalpel in my back - but must admit pains only lasted a day and then finished. Hope you enjoy the Nativty play.
Angela - lucky you finishing rads - I still have another 9 to go - actually have last one on 28th December. I'm not going to start taking the arimidex until I finish rads. Last time I spoke to oncologist I asked when I should start taking these and she told me to please myself, start taking them while on rads or wait until I finish, my choice. So I'm going to wait until after Christmas and have a side efffect free Christmas. This rads business is a real pain, every day - I ask you do they think at this time of the year I have nothing better to do. Wouldn't be so bad but every appointment I have seems to be between 4.30 and 6 pm. Wastes my whole day. Why do they bother asking if you would prefer a.m. or p.m. of course I told them morning and every one so far has been late afternoon (should have said I preferred afternoon!!).
Everythingisrosie - Must admit I haven't done arm exercises since mx, I was keen then and didn't want to end up with an arm I couldn't use. But since I started rads I haven't done any particular exercises, apart from the shrugging of the shoulder bit but that's only because my skin sometimes feels tight, not painful, and don't tell anyone but I don't use the cream either, got the cream but I was waiting to see if I had any problems and I haven't. Although in saying that if you are having reconstruction then I would use the cream to keep the skin supple - my unqualified and probably unwanted opinion only.
I think I have chemobrain - it's my birthday next week and for some unknown reason I have knocked a year off my age - I actually had to sit down and work out how old I am and then I didn't believe it, had to check with my OH. God it's sad.
Good night ladies and take care.
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Your post aroused my curiosity as I am currently undergoing radiotherapy at Charing Cross (haven't a clue what sort of machine they are using as I just go with the flow). I will be at CX tomorrow and I can ask the radiographer if you want - not shy about asking questions!
Had a quick search myself and came across an article (below).
"Expanding Radiotherapy Services
A SPECIALISED form of radiation treatment that reduces side effects is expanding to head and neck cancers after a successful pilot treating pelvic tumours. This month, Intensity Modulated Riotherapy (IMRT) will begin to be offered to patients, particularly hose with tumours in the nasopharynx, on the Charing Cross and Hammersmith sites.
The treatment uses 3D modelling to deliver a high density dynamic radiation beam to specific areas of a tumour. It is preferable to conventional radiotherapy as it is more accurate, meaning high doses of radiation can be delivered safely, avoiding damage to vital structures which may be harmed using conventional radiotherapy techniques.
By way of example, the treatment will in many cases, avoid treating salivary glands such as the parotid and in doing so, avoid the patient experiencing unpleasant side effects such as a dry mouth.
Dr Mark Glaser, chief of service for radiotherapy, said: “The use of IMRT in conjunction with chemotherapeutic agents and in many cases surgery may undoubtedly improve survival and reduce the most unpleasant side effects in this very complex area of cancer management.”
The introduction of IMRT for patients with head and neck cancer will initially take the form of a pilot programme. It follows a highly successful IMRT test programme for patients with prostate and gynae cancers which started in July.
The expansion in use of IMRT at Charing Cross Hammersmith has meant that Suzanne Harrow, head of therapy, radiography, has initiated several educational programmes for radiographers so that treatment can be given on four of the department’s new linear accelerators."
The article was dated January 2008 and I think is a Charing Cross Newsletter type thing.
Not sure how to post a link on here but if you want to see the actual article I can probably figure out how to do the link.
Hope this helps you.
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Good evening ladies
Well, had my first rads sessiion today. Painless, but we'll see how the skin stands up over the next 5 weeks. I will now have my last session the day after Boxing Day. Then I will move on to endocrine therapy, Arimidex for 5 years. I'm not the best at taking pills, never really been ill, so I'll have to put a reminder on my phone or something to remind me to take it.
Ah well, going to find my aqueous cream and slap it on thick.
Has everyone finished chemo now?
Sian, I saw We Will Rock You when it was at the Dominion, good show, great music but then I've always liked Queen music.
Keep well ladies and remember 'illegitimi non carborundum' (google it).
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Thanks for your response. I think I've confused this - I start rads next week, 25 sessions, I counted out 25 days from 21st November. No treatment on Christmas Eve, Christmas Day or Boxing day (meaning that I will have 5 days without treatment), then I will have last 2 sessions on 27th and 28th December. I was thinking I could start taking the pills then. Just really want to enjoy Christmas food (after the docetaxel I'm beginning to enjoy eating again), not bothered about having a drink, just as happy with tea!
I really don't fancy any more painful joints, age is already taking its toll on hip and knees (cant possibly be the excess weight causing the problem).
You have my admiration for moving house while on chemo - on bad days they would have had to carry me downstairs (still in bed) and put me in the removal van still sleeping,
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Question for ladies who have had/are taking Arimidex. I have been prescribed this drug as endocrine therapy. Onc gave me prescription last time I saw her (which reminds me I must find this!). I asked when I should start taking it and she said to please myself. I could either start taking it during rads or leave off until rads have finished. As my rads start next week and wont finish until after Christmas I'm inclined to leave off until after the festivities in case I have any SEs. Has anyone been given advice on when to start? I'm not the best at taking pills, never really been ill or on long term medication, so I would have preferred clear instructions.
While I'm here what SEs, if any, could I get with rads? Had mx and ANC, no recon.
Any help much appreciated.
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I am in my 60s, had a right-side mx with node clearance end of May. Just finished chemo and starting rads next week. You don't say if you have had any reconstruction done or if you have to have chemo and such like. I understand what you mean about the fixed smile, my OH has his own health problems and I don't want to worry him unnecessarily, so like you, I keep the smile there most of the time, not always easy as you know. Physically I haven't had many problems with the mx or chemo, emotionally good days, bad days but can usually hold back the tears until OH has gone to bed (he's not good with tears). You don't say when your last surgery was but if you are still having pain after 2 or 3 weeks, you should speak to your BCN.
There is a thread for more mature post-menopausal women, I will find it and bump for you to have a read through, it may be of some help.
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Haven't been on for a while, busy busy with Christmas coming up and rads about to start trying to get as much done as poss.
Jelly, had a look at your wedding dress link, absolutely lovely. I'm sure you'll be looking fantastic on the big day.
My hair is starting to grow back now, got about 3mm of hair on head! Looks even whiter than it was before but we'll see what happens.
Went last week to see radiotherapy people, had tattoos done and they didn't hurt a bit but that's porobably because I've already had mastectomy so still a bit numb round the scar area but no problem. Unlike stitz my rads won't finish until after Christmas as I have 25 sessions to go (think it's because of heavy lymph node involvement - 15/18). I counted out when they would finish and if they had started my rads next Monday (rather than Wednesday) I would have finished just before Christmas. Radiotherapy Department will be shut on Christmas Eve, Christmas Day and Boxing Day so I will have the last 2 sessions on the Thursday and Friday after Christmas. But on the bright side, it will all be over before New Year and I (we) can start the New Year on a high knowing that for the time being the physical torture is over (apart from any SEs from the pills that is).
I've been prescribed Arimidex. I asked the oncologist when I should start taking this (got the prescription) and she said whenever I wanted to. Now you would think they would have a set time, i.e. during rads or after rads have finished - she told me that there was no evidence either way about when it should be started. I'll just leave it until after Christmas is over and that's one less thing to give me possible side effects when I'm busy eating for Scotland (notice I don't say England, my OH and daughter eat for England and I can beat them every time!!!).
Since I started chemo I think I'm going deaf, not sure if it's the chemo or wax so going up town tomorrow to have my ears cleaned - sound revolting I know but I did go to my GP and got the usual try the Otex for 3 weeks (this was the first time I had been to see him since referral in January so I'm not exactly harrassing him about everything), tried the otex and that didn't help so at least I'll know if it's the chemo or not. Getting fed up with having to have the television blaring so I can hear what is going on and as for my daughter well she permanently shouts at me now so she doesn't have to repeat herself 4 times and talking on the phone is a nightmare.
Been enjoying my chemo free time and I can honestly say I have not felt this good for months. Back in to my usual sleep pattern - once I'm asleep WW3 wouldn't disturb me.
Enjoy your evening ladies and I wish you all trouble free rads.
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I often had the same problem while on chemo (just finished now). Waking up tired in the wee small hours is awful and I remember it well. I usually had my ipod charged up and listened to audio books - some I had on disc and put on myself and some I downloaded from itunes. This worked for me most of the time. I wasn't disturbing OH and listening to a story stopped me thinking morbid thoughts! If that didn't work I got up, curled up on the sofa and watched rubbish on tele.
Wish I could be of more help to you as I know a good night's sleep is so good for your physical and mental well-being.
Take care and I hope you find something to help.
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Well had my last chemo today – yeehaa. No problems so far although I seem to always have a day’s grace and it should be Friday before SE’s kick in, well that’s been the usual pattern with my chemo so I have a busy day tomorrow getting everything sorted before (if) I go down. It was mainly just tiredness with last chemo, possibly my sugar level hitting the high spots didn’t help either as that makes a person tired anyway.
My mastectomy with ANC must have been textbook stuff (just love talking about my op, only other op I’ve had was a c-section and that was 30 years ago and I’ve worn that one out - getting old you know). In one day, out the next complete with drains. I had very little pain although I did as I was told and took the pills before any pain started, easier to control than to stop, but I only took them for a few days and had little pain. Drains in for a week then removed, uncomfortable funny feeling as they are in quite deep but not painful to remove, dressings removed the following week. For the week I had my drains in I used a plastic bag to carry the drains, tied a belt round my waist and tied the bag to it, just had to be careful the tubes didn’t get tangled but at least I wasn’t walking away without the bottles and pulling the drains. Obviously I took the belt off at night but as I was sleeping on my back and propped up it was easy to remember about the damn drains.
I drove the day after my dressings were removed, albeit only round to Tesco and I took OH with me just in case I had a problem. I should say here that before my surgery I was practising positive steering (no crossing arms going round corners – cos that will pull on the shoulder and armpit). So think about that one. After that I was fine although I did carry a small pillow to put under my seatbelt just in case of rubbing, but as my mx was right sided I found it more uncomfortable in passenger seat.
Like Stitz my upper arm and armpit are still quite numb although I feel the tax is affecting the surgery site because I get the ‘cushion’ feeling a few days after chemo – the cushion feeling is just a feeling like you have a cushion between the arm and the ribs, obviously slight swelling after surgery but as I said the tax seems to affect this with me (possibly slight fluid retention). It does ease off after a couple of weeks and I’m hoping that it goes away permanently now that my chemo is finished (again yeehaa).
So far I’ve had absolutely no problems with lymphoedema although I do realise that this can come on at any time down the line. My arm is fully mobile but I do find if I have to stretch for high things I can feel my underarm pulling a bit (but then I’m a shorty and my OH is 6’5 and he tends to put things away for his comfort, rat).
Now that I’ve bored you all to tears with details of my surgery I’m going to bed.
Goodnight ladies, I hope you all sleep well and to those of you who have now finished chemo – yeehaa again, to those of you who still have to finish, good luck and hope it’s all over soon.
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EverythingisRosie: Glad to see you're up and about again. Real pain when they delay your chemo, just want to get to the finish line, know how you feel about that. And I agree with you about the mastectomy, piece of cake compared to chemo, although I only (ONLY!!) had single.
I'm completely naffed off today. Went for my final chemo today and they wouldn't do it - chemo nurse obviously didn't want to do it because of the extravasted vein from yesterday, said it was still swollen and she didn't like the look of it, asked if I had taken all my steroids and like an idiiot I told her that I had only taken one dose yesterday because I was that long at the hospital and if they think I was taking 4 steroids at midnight they must live in another world. That was it, they decided they weren't doing it and sent me home, come back tomorrow, Another wasted day, And the onc has referred me to cardiology because of my fast pulse rate, she checked it today and it was fine - keep telling her that it probably only goes up when I set foot in the Oncology Clinic, but don't think she believed me and was not amused, no sense of humour!
Try again tomorrow, get the ice pack on my swollen arm - actually doesn't look that swollen to me and it's not sore. I think the nurse was only worried because they will have to hunt for a usable vein and if the extravasated one hasn't healed properly yet it might leak into the tissue (I think that's why by my totally unqualified guesswork).
Have a good day all and keep well
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I too am diet-controlled diabetic.
I hadn'nt thought about my sugar level during FEC, wasn't feeling too bad on FEC so never entered my head. However on TAX I was so bad first time round that I even gave this a thought. Checked my sugar level and it was up close to 20. Saw the nurse at the diabetic clinic and she basically told me there was nothing they could/would do about it as it's the steroids. It should settle down after the first week once the steroids are out of the system. I did speak to the oncologist about this as well and she didn't seem that bothered, perhaps if I was type 1, or on tablets they could have done something but being diet controlled they didn't seem too fussed. If in doubt see your practice nurse or speak to oncologist and keep a record of your sugar level to show him/her.
Sorry can't be of more help.
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Laurable, great you managed to stay the course at the wedding.
Had a nightmare day at hospital . Was only supposedly there to have bloods done and see onc.
Got there at 9.30, bloods done immediately, saw onc within 10 min. Soopa. Onc thought my heart rate was a bit fast so sent me for an ECG and a chest X-ray (looking for possible clot on lungs cos I get a bit breathless after any exertion). Both were clear but still heart rate was a bit high. Had to go for a scan, including dye, and surprise the fluid leaked into the tissue (extravasation) wonderful. Then after lunch had to go for a US on heart. Waited for hours for the result of the scan and it was clear, so last chemo can go ahead tomorrow. Got home exhausted at 5.30. Only good thing was I treated myself to a decent lunch, had to gobble it down quite quickly as I only had 45 min before I had to be back at hospital.
Have the frozen peas on my arm to keep swelling down and the bruising is now turning a livid purple – this is the arm they’re going to use tomorrow!
Only have rads left to go (already had mx), and onc said this would start 2/3 weeks after last chemo and she will arrange for me to see the rads department sometime soon. She also mentioned Arimidex as therapy after rads, last time onc (a different one) spoke about therapy he mentioned tamoxifen - I'll wait and see if they change their mind before I finish rads.
Going to bed soon - had enough.
Take care ladies
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Could be a side effect of the tax giving you the pain in your thigh. I said earlier that after my first dose of tax I had terrific pain in my thighs. I gave the onc a typed up list of all side effects after the first dose because they were so bad (lower dose second time so pain controllable) but I now have a scan on my left thigh booked for 30th, the week after my final tax. I didn't ask for the scan and don't know why they want it but I'll go with the flow. Take a full list of side effects with you, don't rely on memory, once pain has gone it's so easy to forget how bad it was (the brain thinks don't be a wimp you survived so it couldn't have been that bad!!!).
I see you're a TT fan - my daughter also. I have spent many an hour queuing for tickets because she had to either be at work or college - absolute nightmare one year at Birmingham she had exams and could only do one night in the queue but that meant she wouldn't get decent tickets - I'm her mother what else could I do, I queued the first night, never been so cold in my life and I come from the frozen north (it was November and below freezing). She got her front row tickets though and that's what mattered. Yeh, yeh I know the word on my forehead reads 'Idiot'.
Hope the pain in your leg has eased off a bit and you can at least get some sleep.
Take care ladies
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Jelly - glad to hear of your news about competition - everyone on here deserves a bit of luck after what you've all been through.
Toriachick - welcome on board.
Stiz - they lowered my dosage of tax last time and SEs have not been nearly as bad, Could sleep 20 hours a day and feel rough but apart from that I'm fine and well on way to recovery. After first tax (full dose) I think I was in delirium, should have been in hospital but too far gone. This is the trouble when you threaten your OH with physical violence if they don't stop asking you how you feel - they stop asking and leave you alone!!
When I last saw onc I gave her a typed up list of SEs (oh I was in a mood that day). This week I got a letter in from hospital asking me to go for a US on my left thigh, I had to change the day cos it was on the Friday after chemo and I will probably still be on my hands and knees at that stage. Don't know why they want this done but the first dose of tax did affect my thigh, i.e. burning sensation, To cut story short after mx surgery my left thigh was left numb, not painful doesn't bother me any more.
OH sitting here coughing and splutterig - do I need this? Off to my bed for a couple of hours.
Keep well ladies
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Good evening all
Sian, glad you enjoyed the forum, it's always good to meet new people with whom you can share experieces and even learn from.
Jellytot, hope yu manage to stay away from hospital - you're having a rough time on chemo
CoachK -hope you and the kids are feeling better - don't worry too much about OH, he'll recover (my OH just gives me the 'I'm a MAN, I can do this', then when I'm on my feet again he soon drops back into the old routine!)
Lauralable - happy you're not feeling as bad on 2nd tax, but as you say early days. Hope it doesn't get any worse.
Daysy - you go ahead and moan, grumble all you want get it out of your system - if it's any consolation to you I did read somewhere (can't remember where) that tax can be a wee bit harder on older women, possibly because the joints and bones are getting a bit achy with age anyway (I'm 65). I didn't have particularly bad aches but then again I couldn't have cared less as the tax trots made me feel soooo bad. I felt as if I had eaten a kilo of 'iffy' prawns! Only consolation was that I didn't feel nauseous, just felt awful, like food poisoning. Did the hospital not give you anything for the joint/muscle pain - I was given tramadol by the chemo nurse and I did take them (when conscious), possibly why my pain wasn't quite so bad.
Anyway, off for 2nd dose tomorrow - really looking forward to the searching for a viable vein, no doubt it will be lets soak the hand in hot water and see if we can find one, absolutely soopa. Onc says they are reducing dosage, so hopefully won't feel so bad. Will be having (hopefuly) last one end of this month and I'll find out for def then if I have to have rads as well. Is there anything else they can do to my poor old body? That's actualy a question - is there any other treatment they can inflict on me?
To all of you suffering bad SEs, my heartfelt sympathy and hope you can at least get a night's sleep,
Take care all. Maggie
Please excuse any typos, fonts are too small for me to read properly (must get new glasses after all this has finished)
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I have my second dose of docetaxel tomorrow. I saw oncologist today and complained bitterly about side effects. My main problem was diarrhoea (for about 10 days), I did have joint/muscle pain but believe me even that pain was overshadowed by the tax trots. I digress - after my first dose I was given tramadol by the chemo nurse along with the booster injection (to be administered by me) - didn't ask for the tramadol so I assumed it was standard practice and did take them so probably helped in keeping pain under control.
They have decided to reduce my dosage from 100% to 75% so hoping things won't be as tuff this tine round (to be honest, when I spoke to onc she said that the team were reducing the dosage for most patients so I can only assume that others did their fair share of compaining) - onc also gave me Loperamide to help with trots. Over the past 3 months I have taken more pills than I have during my lifetime (and I'm 65). I was probably a bit of a martyr in that I would just suffer thinking I'll take a pill if it gets any worse, not any more I take them before the pain starts. They told me this after my mastectomy, take the pills, don't wait until the pain starts, easier to control before rather than get rid of it once it starts.
May all your SEs be minor. Take care all.
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Good afternoon ladies
Hope you're all feeling a lot better today, and aches and pains subsiding into just awful, rather than agony!
I am up and on the move again, it's been 2 weeks since my tax so hopefully I have a whole week before it starts again - this time I'll be ready as I know what to expect - spare room ready for me with lots of drinking water beside my bed, lots of painkillers beside the water, tins of soup for OH to heat up, pineapple juice to hopefully clear the mouth a bit, cheese (for some reason cheese seems to help take away some of the nasty taste and doesn't feel like cardboard). Getting it all organised.
Well I'm having an evening out tonight - don't know how I'm going to manage but I have a go. I'm going out with my daughter to see Darren Hayes over at the O2 in Greenwich. Only trouble is Greenwich is way on the other side of London for me, but I can get a tube from Wembley to take me all the way there. Daughter and I will dine out and then hopefully enjoy the concert. Thankfully they're not standing tickets,
Ford just phoned me my car will be ready for me tomorrow - a whole week without a car. I know that sounds ridiculous that I can't live without a car for a week, but I wasn't fit to do a lot of shopping and then hump it all back by myself (OH has mobility problems), daughter doesn't live here and besides is at work most days, so I've nearly emptied the freezer, and really need to get out there and shop until I drop, which won't take long.
Anyway ladies, keep fighting the good fight - you can do it might be a day at a time but you'll get there.
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