Going out on a yacht for the day on tues, will be 36 degrees and little shade. so went to a nice shop that had an oversized grandad shirt white with blue stripes in the window, that looked like the perfect coverall way past my knees.
scared the poor greek owner by first choosing swim trunks for Tim - had to get the useful greek phrase for autism out and show him, shrug and a sad face but an understanding "he is your son, what can you do?" Then I pointed to the big shirt, he tried to say a medium would be ok for me and insisted I try it on, it was a little tight and I really wanted voluminous , bear in mind that I am only 4ft 11, and now clock in at nearly 12 stone thanks to bloating, so not a great look, the man was trying to be kind saying medium ok only got extra large next. I had to try it on, shades of Demis Roussos without the hair and beard. It reminded me of when I was expecting the boys and hit 14 stone (before boys was 7.5 stone and a size six).
i took pity on the man giggled, quite alot and waived the "I have cancer, chemotherapy" greek phrase saying, must stay out of sun, boat trip. He shrugged again "this is the life we have, get through it with laughter" with the saddest expression on his face and while he was putting my stuff in a bag put a pink and black stripey scarf that goes brill with the shirt saying "much laughter, much life". I think i'll take his advice.
See some of you in Facebook land, or when the forum comes back again.
love to all
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Joining the useless feet brigade - swelling up massively, now lying with feet way above the rest of me in hope will a
l slide away, pink soles too! elevated liver things I think.
emma hard news for you, thinking of you and all of us who are going to have hard choices ahead.
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I'm in Ludlow, well not right at the minute.
Definately in Shropshire also known as the graveyard of ambition.
Have been sitting in jacuzzi and even today been and sat on a beach, sadly jeep broke down on way back so had to pull into a Taverna for lunch and a couple of cokes on the rocks while waiting for replacement. Mild panic as Tim got upset over broken car and wanted it fixed right then, but we have handy greek phrases. I have cancer and My son is autistic written down for just such moments. The taverna owner and the mechanic read this and with a couple of bored Nei Nei s and shoulder shrugs they just carried on getting us our greek salad that we didn't order! Have had to wave the phrases quite alot as Tim been a bit over excited at times and caused an entire beach full of Greeks and Italians to fall into stunned silence as we the only pale and pink visitors run after him or just look on fondly as he flaps and jumps up and down and screeches at the top of his very loud voice.
Paid for this adventure by 4 hours sleep followed by a good 2 hours to come round.
Hope everyone out of hotel NHS, that all wigs are coming up to requirements or refunds met, that all OH s and teenage off spring will be visited by the sensitivity fairy, and that all bad taste buds go away. Love the night out at Simpsons must go there maybe for my OH 50th just after finish chemo and before mx. Have been to Turners not far away that was pretty special too.
Love the idea of a Facebook page easier to post pikkies too.
Here's hoping for a SE free, relaxing, stress and anxiety free weekend. However in our case I am just waiting for the next event!
Phrases to hold it together to.
Weebles wobble but they don't fall down,
chumbawumba - I get knocked down but I get up again ain't never gonna keep me down.
Or a resigned - If it weren't for bad luck we'd have no luck at all.
Now going to struggle to a taverna to watch my lovely boys eat - sore mouth forming!
With love to all
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Am feeling very guilty that you all might think Im busy and coping etc. and really am getting angst ridden about needles.
Think it is easier in a way to have to get up and deal with the boys, self motivation is something I badly lack. The routine went totally out of the window when boys finished school. Used to get them up and settled at school, make dinner for that evening and possiBly double amount so didn't have to cook following day, make healthy lunch for me and then have a nap that sometimes went on until had to get boys from school again. cope with evening activities, scaled down for me, fill dishwasher and then bed again. Anything else has been a real struggle and only do able if haven't slept all day just part of it. Trying to do what I call work, dealing with education authorities, running my lititle local charity and parish council stuff (major development on way) have just gone pretty much out the window. I really admire those of you who work or have to motivate yourselves much much harder.
had to have a hen put down recently after she broke her leg cos knew I couldn't do the caring she needed (now down to 7). All the SE's are very waring too especially the silly ones like dry mouth and bad taste.
i love a good British wedding, uptight bride, family feuds, embarrassing best man speech, inappropriate frocks and there has to be a fight at the disco, although missed a very classy gay wedding at Ludlow castle by coming on holiday, all Jimmey Choo shoes for both the grooms and lots of Botox.
hope Sandra is out of hospital, those at the bar are not bingeing and that all those havent heard from in a while are just lurking and not poorly or too down.
villa owner commented on the amount of water we ve been getting through until I owned up to flushing the loo so much cos of all the weeing and bowel movements - did he go red with the heat?
Greece is extremely hot, we all tried the local town (Nidri) for postcards and lilos for pool, full of bad tempered Greeks and Italians while we tend to go for the "smile and wave boys" (Madagascar film, the penguins at the end) decided to retreat to villa and stay in pool. Or at least I'm back to bed for at least a couple of hours, lunch ready when they are thanks to local butcher and picnic for beach when it gets cooler . Nap time.
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are you getting extra steroids cos you are doing chemo at same time? No one mentioned any thing about other meds on top!!!!
hate the steroids - red face and upper body and bloating! Panic setting in!
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was about to be all upbeat and positive, then caught up with all the posts and I don't dare just in case I get struck by a million thunderbolts!!
Maybe I am just immune to the crap things people say after 14 years and counting of living with Autism. But then thinking back wasn't I one of those dim people who didn't know what to say But had to say something? When asked how I am I tend to be honest and say with a big smile "you have no idea of the effort I have to put in to be here/talk to you or how much I am going to pay for it later" .
well here I am at silly o clock in Lefkas.
Considering we started travelling the day after chemo, the journey went well. Stayed at the radisson manchester, (looked out for you Chelle) so that 7.00 flight was not bad. Had wheelchair assistance all the way. We normally get through security pretty quick because of the boys, but because people don't get autism we usually get bad looks, this time all pity and smiles, but then I was looking pretty grim with cannula bruising and support stockings on phlebitis arm and legs! Amazing how many people talk over you when in wheelchair.
wore face mask on plane, was much too big, but best on safe side. The airport in Greece was amazing I was expecting queues but it was really clear.
apart from couple of trips to tavernas have spent all time at villa with A/C on just recovering from trip and acclimatising to sun. Boys have been off scuba diving and hiring a boat. But the view is pretty good and entertainment provided by Germans and their water toys on an expensive private charter yacht. Shared the bay with Leonardo Di capreo's yacht last year.
water retention and bloating has been bad but apparently a diet of cucumbers, tomatoes and low fat dairy is diuretic so bring on the greek salad, can't resist the little pies as well though.
had scary moment at taverna couple nights ago. Twin 2 swallowed a whole slice of cucumber (he insists it was the octopus), started choking on it, OH had to do very dramatic Heinrich manoeuvre just as Simon was turning a bit blue. Fortunately he forced the cucumber out (green so definately veg) amidst much grunting and groaning - the rest of the customers and staff - stared silently until drama was over and then just went back to their food! Obviously a near death experience just isn't dramatic in these parts.
Emma sorry to hear you ve been feeling rough, and to all the rest of us who really are feeling the impact of treating this disease. And to Maxie - sounds calm but it is a bit scary being admitted.
sympathy with all those with crap veins, am starting to get needle averse - was very wimpy last time needle went in for cannula, which of course was why I opted for a Picc line grrrrr! Bruising is spectacular as ever. Am taking longer to plunge in the injection for bone marrow stuff and am dreading the herceptin.
But I have been offered the chance of a clinical trial. Either one looking at receiving herceptin over either 6 months or a year but don't know until accepted which length would get. Or going for self adminstered subcutaneous injections rather than intravenous. WouLd still need to go to hospital every week for injection and be supervised, but would it be better than attacking veins? Also the thought of benefitting someone in future - travelling to the hospital for me can be over an hour each way and since so fatigued is a real strain.
any thoughts anyone.
Thinking of all those facing another round and those who are missing in action.
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Fec x 6 cycle 4 day 1
thank you everyone for best wishes especially Emma for pm ing me and Jayne, found an answer machine message that got hidden by more able ASD twin.
I got bumped from the 8th to today thanks to the Picc line being unnecessarily removed and infection setting in and changing all my booked dates.
I have not been able to get on this site for ages sadly due to a combination of SEs, phlebitis, cording, cold callers, growth explosion in the polytunnel s, OH away at work for past couple of weeks, fighting with education authority over funding for the right support at his new school for my really autistic son, the end of term, 2 hens dying, (what should you do with a dead hen in this hot weather? First one went in bin in newspaper - maggots by day one, the other got well wrapped up and shoved in the freezer), and packing for 2 weeks in Greece! We head off tomorrow.
I have noticed some of you have nearly caught up with me on the SE front. I have invested in very cheap big pants and nappy bags for the days when the loo was just that bit too far. You may have read my difficulty getting thrush meds from my local Boots (mortifying) but got them in clinic and now inthe chemo drug bag. Going to have fun getting thru customs with all my meds, creams and syringes also many packets of prunes just in case local shops don't have them. My new SE is elevated liver enzymes so having an ultra sound when we get back, anyone else got this?
Only got a bit sick after the bar today and pounced on the co codamol to lessen the headache. Had mega steroid dose so looking forward to the tomato coloured face, but hopefully will mix in with the too much sun crowd!
Need to sort out the house sitter and make sure he knows which animal to feed what and how to deal with the triffids were my veggie and chilli plants.
Might have more opportunity to keep tabs on you lot while out there.
Best wishes to all
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sorry to hear your news, I did a big rant about men and their ability to cope ages ago so won't subject you to that again. thinking of you though.
havent seen any posts from Lins for a long time and the other Nicola? Sure there are some other names too but chemo brain fuzzy, Jayne I will try calling you later if that is ok.
did chemo yesterday pulling the determined to go to Greece Face in a bright and jolly way.
Left arm a complete mess from Picc removal, phlebitis, and recent blood tests, covered in bruises. got special cream hirudoid for all those with bruising/superficial phlebitis.
had to use right arm which is my affected side - any reason why they don't like to use it?
all looking positive and hopefully back on track when the top of the first syringe cracaked and started leaking. Had to wait an hour for new syringe to be delivered, nurse had never seen that before. Back to infusion and her picking my brain about managing behavabout of ASD kids cos her nephew ..... (Back to the day job boring about autism rather than cancer).
When the syringe with the E stuff in it also cracked but this time in the cannula line - panic and pinching the line to remove the section then blood dribbling everywhere - lucky I had lots of kitchen towel in my just in case I start throwing up bag. Had to wait for another hour for a new syringe and the pharmacist coming down to check the syringe and start writing a supplier complaint and then go off and check all the others in the clinic!!!
My nurse then giggled nervously and said "I'm glad it's you this is happening to". Think I will assume she was complementing me on calmness!
earlier in the week tried to get some canneston for yet another side effect - thrush!! The queue in boots was very long and this being Ludlow I knew most of the people in the queue, including a man I have had many battles with the chief executive of the county council. The assistant grabbed the box I wanted held it up and said "is this for you and are you taking any medicines". So there I am in a not flattering bandana thing, looking woozy, briusises and hospital dressings on arm and don't forget a local celeb from being in papers for my head shave thing, I laugh yes for me and shed loads I am on chemo. Assistant then shouts down to pharmacist "this lady is treating herself for thrush and has cancer we can't let her have this can we" I turn to the queue and say Anyone back there not catch that? someone shouted to the asstant I did but my Dad is a bit deaf could you say it again?
right my new thing to do is selling our old campervan on EBay. Very exciting. I am very lucky! My critical illness policy is paying up cos I am officially critical! We took policy out just in case years ago when we found out about the boys, there was doubt about them paying up cos of better survival rates for BC. So relived have blown half the money on a newer, easier to look after motorhome! Pity the man who took me on a test drive while OH was on the oil rig. He said it was unusual for the lady to drive as i took a swig of water and shoved it in to reverse to try parallel parking when he wasn't expecting it.
Hope everyone has an SE light day.
love to all
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No bar for me today. Removing the Picc line was a mistake should have been treated instead. Now going on thurs as long as phlebitis cleared up this mucks up all my arrangements and the holiday in Greece. So cross.
best wishes for everyone who is going today Ill be there in spirit.
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Fec x6 cycle 2 day 21
not been here for a while - just so knackered, overwhelmed by SEs and had to save energy for feeding and watering, kids, animals and plants. All side effects still being a pain, but opted to keep chemo at same level to blast the buggers.
Thanks to Jayne for phoning to see if I was ok, looking forward to seeing you on Mon when we get to the bar.
I had a PICC line fitted last Wednesday and it was all text book, apart from a major amount of blood, which I didn't realise about until I saw the amount of paper towel in the bin (I had my eyes closed).
Bloods got taken from hand at Gp surgery on fri ready for chemo on mon. They wouldnt use the line this time as too new. but this reminded me why I had opted for a Picc line. Struggled to find a vein and then not much came out.
Despite doing the warm compress thing for a couple of days after Picc fitted, Friday night my arm felt quite painful so did the heat thing thru the night. Saturday morning my arm was very tender, a bit swollen and pink above the Picc site.
So called the chemo line and after a bit was told to get to hospital and report to the chemo ward. Got a friend to take me so OH who only came home from oil rig on fri night, could stay with boys (autistic for the newbies).
got to the ward to be told to go to the medical assessment unit, this is a long walk thru many corridors and downstairs. So hot and a bit breathless arrived at this unit, shown to a privat room and waited for nearly an hour. Told friend to go home and enjoy rest of lovely day. Arm very painful, nurse didn't know where to do blood pressure since shouldn't do it on cancer side and the other arm has the painful Picc. Completed triage(3/4 hour) and promised to bring water.
An hour later (no water) a young very good looking male dr examines arm and declares it is phlebitis and the Picc has to come out, he suggests putting a new line in my leg, assures me he knows all about lines and is very good at them, also will give antibiotics to clear up arm. Says he will get water delivered. 30 mins later on way to loo I am told nurse who did Picc from chemo is coming to have a look at me. I wait another 45 mins and a completely different mature nurse from chemo outreach comes in saying the Picc line is important and needs to be treated not removed, by using heat pads, I was a bit drowsy so didnt manage to say had done so thru night. There are then raised voices in corridors of the "I've been doing lines for 30 years" kind. Nurse then comes back a little flushed, saying since I had been trying heat pads, perhaps the line needed to come out but there woul be no new line particularly not in my leg.
She removed the line told me to call OH to get me since its an hour to get to hospital. I would be fine to go home and rest, and to phone chemo first thing on mon so they refit do a new line and then do chemo.
OH arrives over an hour later with most severely autistic son to be told I can't go until been seen by a consultant who wouldn't be doing rounds for another 2 hours. Naughtily we get son to jump up and down in the corridor and demonstrate some of his bizarre habits. suddenly another good looking male dr comes in and says he is ok for us to go but politics mean see consultant. He then asks why OH is sitting on son and we explain he's autistic and it is the best way to keep him calm. New dr then says yes can go, shouts to original Dr who agrees with this, I ask about antibiotics but he says dont worry about it.
Althrough this I have been polite, understanding about delays and cheerful. However as we left our room and pass the nurses station, I say thank you to the 2 drs I have seen and the triage nurse, but the response was very cold. I feel the row between chemo nurse and first dr has rebounded on me badly, but I am also not sure about the treatment and advice I was given. When I got home the protocol notes that I was given when having picc done, say phlebitis can occur and that it should be treated with warm compress and antibiotics and then it goes after a couple of days. I was sat in that room for a number of hours just waiting why couldn't they have tried the warm pack thing then - what if I hadn't been doing it right? Also will I really have a new line fitted and then have it used straight away. But also what vein will they use since ones in elbow not well and hand all bruised from having bloods taken.
also the chemo nurse on removing the line put a transparent sticky dressing on the wound without a pad thing so the sticky was directly on wound and the blood couldn't be soaked up or congeal? When removed wont the sticky damage the wound site further?
i had a major headache through out and kept falling asleep as fatigue is one of my most prevalent side effects, so I wasn't able to process or query what was going on. I do feel a little bothered about how chemo is now going to go on Mon.
What do you lot think?
(by the way I never got given any water)
hope everyone is keeping cool in this heat
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SE of the bone marrow injections are
feeling sick. Check
bone pain. check
Red rash at injection site. Nope
high temp. Nope
So I still have somethings to look forward too?
Just for the newbies I am sure I am getting most of the minor side effects so that you don't have to!!!
Been to Ludlow Tesco to stock up on dried prunes and bizarrely sardine and tomato sandwich paste!!! Not since primary school!
now knack ered and joining many of you in front of the tele. OH disappears Sun night so need to save myself.
pHave a good weekend all
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Fec x6 cycle 2 day 7
hi its back to being all about poo for me in amongst about 20 other things, breathlessness really starting to be a pain.
dry mouth and bad taste a real drag particularly if off ginger. Try fresh lemon or lime with a little bit of sugar but keep it tart and add cold water and ice, or freeze, rhubarb cordial, snack on fresh blueberries straight from fridge, fruit flavoured teas particularly the berry ones I find great. Am also experimenting with freezing fresh fruit like strawberries and melon and then sucking on them. Calipos especially the lime ones are good at moment for me, and fav is raspberry frozen smoothie on a stick. Amazed anyone can drink wine it is so disgusting to me now as well as ordinary tea and coffee, dark chocolate is foul and I could cry cos my boy makes the best choc chip cookies.
see earlier post but I got the bone marrow injection pain really badly one night - thought it was bad constipation to start with and had to call for help.
i have 7 days of self injection after chemo. I am already on naproxen for arthritis type aches and Gp recommended upping the regular dose to cope with the extra ache. Also have coco codamol when headache/pain too much for paracetamol and in reserve have diazepam. I don't take ibuprofen cos of the naproxen being already pretty strong. My onc said be proactive, if you think something is going to hurt - take something in advance and he approved of my list of stuff. Again I would always advise talking to your onc and keeping a diary of what you are experiencing, a bit anal! And far too organised for me usually but it is helping to work out what did what when.
sorry to hear that the cold cap has had such limited results but those of you sporting nice new Barnetts I am very jealous, about to soak all my non jersey Cotten in fabric softener cos head very sore. New craving, broccoli fresh from garden, steamed and covered with mature cheddar cheese sauce on whole meal bread lightly toasted. Think that will help my bowels?
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FEC x 6 cycle 2 day 5. Day of chemo is day one.
found really long, a bit dull but quite I important article on chemo/rads effect on mouth and teeth etc. Anyone advised to go to dentist before treatment started? I remember reading it somewhere vaguely but no one said anything more - wish they had.
New SE - tender glands in neck and face area - anyone else dealing with this one.
Have put link but just in case have broken rules go to cancer.gov and look for cancer topics, supportive care, oral complications!
hope everyone has had a quiet night.
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White or pale gums goes with the territory - treat teeth and gums gently, as mentioned above. Dry mouth will ease off, my fav at moment is raspberry frozen slushe on a stick. Keep a sucking. Can indicate low white blood count.
dont forget to write down your SEs and mention them when you see your teams.
after major meeting with school have been in bed all day now coming round to go to school awards do, Simon is getting most improved learner and top in Drama GCSE - very proud. Also we made the 3 rd local newspaper for the head shave cancer research Fundraiser. Now on £1,700 thanks to all for good wishes etc
maybe Ill just nap for another hour before getting up. Rain torrential.
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Fec x 6 cycle 2 day 4
wow Becky what a marathon post.
Went to see Onc he asked how I was coping so gave him a list of the SE's as you do, he then offered to reduce my cocktail intake, less of the red stuff in particular. However I decided that all though it has been very annoying and draining I didn't have to be hospitalised and now I know what to look out for and what to do about it that I would rather stick with the regimen cos they don't really know the effect of reducing the dose. It was agreed that I do seem to be unusually sensitive, hair loss etc earlier than most but since blood count is good, we will see how I go after next time. He advised being proactive and if I think something is going to be painful such as the reaction I had to bone marrow injections then go for the drugs before I need them or as early as pos rather than waiting for things to get worse. I can roll with that.
I have assessed for a PICC line and my bartender saw me there and said thank God for that! So I think that's a positive. I also asked about my Greek holiday in August and onc is very encouraging about me going, it's the nurses who all do a sharp intake of breath and tut about it. I think tho that onc is looking at the bigger picture.
While that was going on my twin autistic boys were trying out 6th form colleges which has thrown up new battle grounds to ensure they get the support they need. One of them is severely autistic, but is doing gcse higher maths in his own unique way, loves Shakespeare and doing French at entry level in a gcse class, however the college had him in a group where they were practising to write there their own names and the staff didnt seem to recognise that this would not be a good match for anyone. Also I have demanded a meet at 8.30 this morning with the current school head as one of the support assistants took the opportunity of everyone else who works with my boys being absent, cause trouble - not a team player and out of step with everyone else. So my side effects will just have to hang fire while I get angry.
So. Side effects
hair loss - hit me very early 10 days. Had already decided to go for the head shave event -see earlier posts. And th lady who did it said that she could see it was going and that it looked sensitive. the shaved hair look didn't last many days as the rest of the hair is almost all gone. My scalp is very sensitive and sore so the wig is very uncomfortable so have taken to soft caps and things mostly annabandanna. Lady jungle slashed and burned, armpit gone and arms, leg hair hanging on but eyebrows thinning. Skin is sensitive too. So have taken to soaking in oilatum or other ecszema type stuff in a warm bath and that helps. Also bucketloads of unperfumed moisturiser.
Nails - very brittle and bendy - constant filing with a soft block thing don't know what called has a different effect on search side to buff nails. More moisturiser.
eyss - sunglasses when out also helps with headache. Cooled cucumber slices and eyemasks kept in fridge use them when just chilling.
headache - have combination of naproxen which also helps with the bone ache, co codamol and paracetamol. Also the gelled headache strips. avoid coffee, tea and chocolate tho gone off milky drinks anyway.
Slight nose bleeds - can feel them building as cold lump behind nose so stop doing stuff lie down eye type masks on, careful not to blow too hard, if more than slight blood then lean forward pinch bridge of nose etc but never been much so far. When it is I will call for help.
sore gums - avoid boiled sweets, crisps etc, use aloe Vera toothpaste on soft brush and use cool mouthwash or salt water.
mouth ulcers - bongela until you can get some gelclair prescribed.
with the constipation, diaahorea and sickness, ensure that the bathroom is a pleasant place to be and you have cleaning products gloves, tissues, soft botty wet wipes, face wipes, something comfy to kneel on and entertainment. Think like a man and accept that you may need to sit there awhile until mission accomplished. Possible avoid taking phone in after the Chelle experience?
Look at all the anti sick things you have been give cos we are all getting a bit of a variation and ask for an explanation of them and the effects of changing or adding. I took all of my anti sick meds and macrogel (anti constipation) the day before in prep and I think it did have an effect. I was also then given Emend so although feeling sick and nauseous and retching, not actually sick and bowels although not right better than last time. Eat anything to produce soft stools - dried prunes etc unless of course yours is the other problem. Fresh fruit and veg a must also oily fish, tuna, salmon, sardines, mackerel - if dont like these change attitude and think of them as good medicine.
Bad taste, dry mouth - anything that works for you, Gin Gins, pineapple etc, I found Ginger ice pops, fruit frozen smoothies and Lemon Lime flavoured all good And also make my own. Citroen presse - Fresh lemon, or lime with small amount sugar and cold water. Drink loads have bottles everywhere to sip from. Fruit teas eg cranberry, raspberry etc also some are diuretics for the steroid bloating.
reaction to Bone marrow injections - pain around kidneys lower back, pelvis into thighs and spasms very bony ache. Take all painkillers and call helpline. I got diazepam urgently delivered and some liquid morphine then just floated away while it all passed.
vag discharge - pads ! gross!!
red itchy skin and spotty, - eczesma stuff and loads of fluids.
bloating water retention - keep drinking and try natural diuretics.
PLEASE REMEMBER. It is unusual to get all of these I am particularly sensitive to this stuff, it isnt necessarily going to happen to you.
mine have not been severe enough to be hospitalised but I have called the helpline and got help and then checked by a Gp. My temperature has remained steady. I have still managed to run the house, do a bit of veg gardening, walk dog and other bits and pieces but have also known when to stop and just chill. OH works away so also had to put contingencies in place and rely on friends, I have no family here, they are all 90 miles away and have other challenges - see earlier posts!
i am no different from anyone else I have major downtimes and have playlists to cry to and playlists to pick me up again, my relationship with OH is challenging and needs to be useful but not overwhelmed by all the more emotional stuff us girls have. Which can be very draining and disappointing.
it all sounds quite grim but no one said it was going to be a walk in the park. So head up shoulders back knickers up, hands washed and on we go.
I am not medically trained so talk to your own teams and lets keep this party going.
school awards ceremony tonight and one of my boys has 2. Bringing my mum up to see it for first time and then Indian takeaway - perfect.
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