Breast Cancer Care Forum

Hope the babysitting isn't too onerous, Katy, and that you enjoy at least some of the time with your GC! Also hope there have been no more mum dramas. At least she was fine though.  We've had a really up and down week, but hopefully, having been given some new meds at the docs on Wednesday, things will improve. He's had fewer panicky shaky attacks and sleeps through the night - (except when he forgot to take it on Thursday night: Friday was hideous! :( )  On Monday, I rang the counselling service and spoke for nearly an hour with a wonderful woman who told me that I definitely shouldn't give up my job and gave me some things to say to OH about what he can do to help himself and be less dependent on me. OH thought I was ringing, as he'd asked me to, to arrange a carer to come in to keep him company while I was at work on Tuesday. As an introduction to putting forward the ideas the counsellor suggested, I told him that the carers were too busy supporting people who LIVE on their own ALL the time, or who need help with getting meals, personal care or dressing, none of which he does. As I'm here for 20 out of every 24 hours he doesn't really qualify! That hit home! He actually looked a bit sheepish, but it didn't stop him panicking about me going to work. Hence docs on Wednesday. Fingers crossed the new meds can improve things for him. It's what the consultant prescribed last Friday, but doc says OH doesn't need to reduce his other antidepressant. I need this to work; I'm so fed up of worrying about messing school about, even though everyone understands and is very supportive.    YD rang me while I was sitting in the car during the Friday night swimming taxi service (the taxi doesn't swim haha) It was lovely to talk to her. I miss her so much, especially when OH is being difficult. She cheered me up immensely by saying they've decided to come to us for Christmas again as they both love my Christmas, especially the food! :D I have always said that I didn't expect them to come once they had children, as we refused to go away at Christmas after we had ES. Boxing Day or New Year was for visiting, Christmas was ours at home. YD says she doesn't care if  OH is a pain, she and DIL can take some of the strain and I can enjoy seeing GD. She said I need something to look forward to. Sooo true. I've not told him: it'll only give him something else to stress about!    Oops! Sorry! Mentioned the "C-word" rather too many times. Too soon! :)    ... View more

On no! Sorry you are having a bad time, Katy. Hugs. xx How is your mum? Is the baby sitting going OK? Everything alright with your Ds?    I actually slept all night and woke up by myself at nearly half past 8. OH didn't call me until he heard me getting up, and he'd not been awake very long. He's still recovering from 2 appointments in 2 days, so he's still very jittery. I'm coping better because I slept! Got the "should I give up work" debate in a constant loop in my head - answer swings violently from "hand in 4-week notice NOW " to "Stick the year out as planned" Or maybe I could further reduce my hours so I only do 3 mornings? Our academy pays into a well being service so I'm going to ring them for advice. They may point out some other options. Trouble is finding a time when I can do it without OH around!  ... View more

What a week! Had to take the day off work, on Tuesday, because OH was in a shaky panicky mess again. He was suddenly, miraculously, much better when it got too late for me to go to work! Grrrrr! He is definitely obsessed with the idea that I should give up work and be here for him all the time - I'm fighting hard against that! I NEED that contact with the outside world - and has decided he's afraid to be alone at home (though that didnt seem to be a problem on Wednesday afternoon when I took two of the volunteers to harvest some of the allotment stuff, trying to give him one less thing to stress about!) On Wednesday, just before the end of the morning, I checked my phone and there was a missed call from home number over an hour before. And a voicemail message. Listened to the message and it was just a high pitched garbled  voice. Tried to ring home number and OH's mobile. No answer on either. Spoke to headteacher, who is being very understanding - at the moment, at least - and dashed out of school and forced myself to drive safely home.  Got in house. 3 radios and the TV on but couldn't find OH in any room and no answer when I called. Couldn't see him out of the windows anywhere. Started to feel really guilty for standing firm and speaking to him rather sharply when he was begging me not to go ot work that morning. Imagined all sorts of horrific scenarios. Heard a sound I recognised. Looked out of window into back garden and saw him cutting the hedge. He was fine. He'd rung me because he got upset when someone was nice to him on the phone and had rung off without leaving a message: the noise I heard must have been a combination of the TV in the living room and the radio in the kitchen!! Took me a good while to calm down! Yesterday, he had his 2nd session with the CBT therapist, (so I was late into work) which stressed him out and today we've been to see the (non PD) consultant, (another day off work!) so last night he was awake and panicky in the night and up before 6 - getting me up as well, and I'd barely slept Wish we had cancelled this appointment as it has just left us confused (and exhausted after no sleep!) consultant disagreed with GP about best antid's to take. OH very unhappy with the suggestion to reduce the one he's on (and psychologically attached to) and take something else. Wouldn't prescribe any new PD meds because we're seeing the neurologist next month. Watse of time. However, he did tell us that we should still get an appointment through for the orthopaedic consultant but that the knee xray was normal. Oh. Guess there's nothing to fix there then. :( Also, he's going to refer us to swallowing clinic because OH is still not chewing his food when he's stressed. I'm starting to question my determination to keep working mornings until July.: love my job, enjoy seeing the kids and colleagues and need the break from the tedium at home, but I do wonder if life might be easier if I just handed my notice in. But the thought makes me want to cry and then he will have "won"..... and we'll just move onto the next battle? Anyway rambled on too long. Hope all Benchlanders are OK.  ... View more

Two really good days this week. Much more settled. OH seemed to have adapted to me being back at work. He's been calmer and less shaky. Even started getting taxis and doing the things he used to do, before the summer holiday. Hurrah! Methinks, the meds are working. However, just got back from swimming and he's in a right state again: building up to yet another s****y weekend? Every time I dare to look forward and make tentative plans. Every time.  I'm NOT going to stop going swimming, but this is the third week in a row my going has "made him ill". Grrrrr.  ... View more

Oooh! There's someone in BENCHLAND! Yay! It's been eerily deserted. I was starting to wonder if the alligators had eaten everyone!  Just a thought, Katy, have you had new carpets or upholstered furniture recently? I had a colleague once who suddenly developed ""hay fever" which lasted all year. Eventually, they discovered it was the chemicals in her new carpet: the glue?   It's good to be back at work. I have enjoyed working with the kids, getting out of the house  and seeing other people, but it's very stressful because OH has made it very clear that he really doesn't want me to go. Major panic attacks all the week before I went back. However, I've made it very clear that I NEED to go to work as I will go insane if I have to be here 24/7 with him.   He manages OK while I'm away, but I feel guilty and worry about him, so it's not the complete escape I need. I think we're going to have to investigate the possibility of carers coming in, or a befriending service - although as there are SO many people who actually live alone, he would hardly be a priority as I'm here every afternoon!! He's up and down; for brief spells he seems like his old self. Sometimes he seems to have trouble eating: he puts food in his mouth then seems to forget to chew or swallow it and will shove some more in - like a flipping hamster! Dementia? PD swallowing issues? Other times he eats normally, although VERY slowly. Perhaps it's just the depression, which has similar symptoms to dementia, according to my research. Will have to ask the neurologist when we see her in October. He's driving me nuts with the "I'm not well" card every time there's something he doesn't want to do... or hear!! Grrrr!  Still undecided about whether to cancel the consultant appointment on 20th Sept  as it will be with a non - specialist geriatric consultant, and we have the Oct appointment with a neurological consultant, but he's been so ill that I don't want to leave it until October; we might be able to get the next PD meds which may help. Or not. Who knows?   GD is doing the same as yours, KTC, and waking up several times a night. The girls are run ragged but there's nothing I can do to help from here.  ... View more

Are you going to be babysitting both the smallest GC, KTC? Every day?? Crazy indeed.   We're having good days and bad ones. Just when I think the meds are doing their thing he reverts back to stressing and shaking. It's worse when he's hungry - and the constant shaking is burning calories all the time - so I'm having to make sure meals are ready earlier than before. I can't plan to do anything because I just don't know how he'll be. Today, I wanted to get the supermarket shop done because it's usually quiet on a Bank Holiday Monday, and I needed to go SOMEWHERE as we've not been away from the house and garden all weekend. OH said he'd come with me. We got in the car. It was hot, obviously, because it had been sat in the sun. We hadn't gone 50 yards before he announced that he couldn't do it so I had to drive around the block and take him home. Grrr. On the plus side, I still went and I enjoyed the relative freedom - even if it was only shopping! I didn't rush.   Tomorrow, he has a telephone assessment with a mental health therapist, so we'll see what she/he says. On Wednesday, I'm meeting a friend for a cuppa and a catch up. He can come into town with me and go to the library, or he can fester at home but I'm definitely going! Back to work next week so he's going to have to get used to me not being here. I'm actually looking forward to going back to work. It's been many, many years since I've been at home for so much of the summer holiday, with no YD camping or MMU. :(   Exciting news: last night, while I was sat. in the garden enjoying the cooler air, 2 juvenile hedgehogs came to see me! We've been providing dried mealworms and water to an adult hedgehog for a few weeks now, but these were definitely smaller. So our garden is home to at least 3 hedgehogs! It is ridiculous how happy  that has made me! :D ... View more

Yes, walkabout, he does have PD, and I suspect he's starting to get dementia too, but that could just be the depression & anxiety which will hopefully improve if we've finally got the meds sorted. I hope so.  I always said I hadn't the patience to work with the elderly and confused - never mind LIVE with them!!    YD rang last night and we had a long chat/moan. I won't repeat any of her suggestions but they made me laugh. She knows her dad so well and knows just what to say to cheer me up. :D   Also "talked" (texts) with ES for the first time in ages. He was, of course, rude about my sat nav! :p He is convinced that he will get PD too, thinks he has some of the early warning symptoms. He's always been a bit of a hypochondriac so I tried to persuade him that just because it is sometimes hereditary doesn't mean he's bound to get it. He sent me pictures of some of the projects he's completed for clients - he has is own property improvement business; they were amazing! Proud mummy moment. :)  ... View more

Sorry. Self-obsessed, as ever. Woo Hoo re ED's job, Katy!! :D ... View more

This has been today's "Happy Color" (colouring by numbers app) picture. It gave me a much needed smile! :) BENCHLAND is still helping me smile even though the current problems are completely non BC related! OH in anxious/tremor/panic loop. Again. Just had talk with doc on phone. He's going to up the dose of the anti d. he's been on for years, as that may help, and we know he can tolerate that. Apparently, it IS still one of the best anti d.s but isn't prescribed much for that any more because most people can't tolerate it! Fingers crossed this sorts it, because life is **** at the moment. For both of us. Been up half the night with him stressing, shaking and sweating! :'( Need to shop but daren't leave the house while he's in this state! *scavenges in cupboards for something edible* ... View more

Hope the party wasn't too grim. :) You are right. Enjoy the family whilst they're there. Plenty of time for tidying up when they've gone! Good news about YD's work. Fingers crossed for Ed's interview. If she doesn't get it, she can console herself with the fact that it was good interview practice and it is possibly a bit too soon to be going back to work?    We are home. It's been a strange holiday: same ****, different place. A couple of times, during the fortnight he got into the anxiety-shaking-panicking cycle.  One morning he said "I need a doctor" and I snapped at him: "NO you don't. You just need to calm down. You'll get even more anxious if we have to find and visit a doctor. Shall I call for an ambulance? That usually works!" He stopped shaking immediately!! That makes me rather less sympathetic, I'm afraid: he CAN stop it.    Yesterday, OH had worked himself up into such a state, fretting about the journey home, that he refused to leave the cottage. Again. (even though we've talked about the fact that getting out helps him!) I was furious, and left him to it; going off for a long walk by myself then driving to the chippy to fetch fish and chips for us for dinner. I found myself thinking how nice it would be to holiday on my own! I also decided that I probably won't bother booking another holiday, certainly not for 2 weeks. It's just not worth the stress. :( Now we are home, though, I realise it was good to get away, so maybe....?   I used the satnav to get us home. It worked brilliantly and brought us back a non motorway route (he gets sooo anxious if we go faster than 50 or 60mph and motorways terrify him!) without me having to memorise a route. Oh can no longer even follow written directions in a car, never mind read a map. This cr***y disease has slowed down his thinking/processing abilities sooo much. Dementia here we come? :'(   We carted the wheelchair around, taking up space permanently in the car, and he used it just the once! Grrrr! :( He said he can't stand being in it because this time last year he was driving a car. I pointed out that this time NEXT year he could be completely housebound and might look back with regret that he didn't make the most of getting out while he could.!! 'll let that sink in. We'll see.   Loads of laundry, garden jobs and shopping to be done but I'm on the kn******* bench tonight (I woke up very early stressing about how I was going to get him home if he was still in the state he was in yesterday. Wasted energy. He's not been too bad at all today!!) Plenty of time tomorrow - and the next 2 weeks, because Norecambe doesn't look any more hopeful. Gutted. :'(   The girls survived GD' s first camping trip. YD said there were challenges but it hasn't put them off. :D ... View more

Today we did nothing. He said he hated every minute of being in the wheelchair. I give up. 😭 ... View more

Thank you, Katy, for your support, as always.  :) xx MUCH better day today. OH very contrite and apologetic this morning, said he realised he's been focusing too much on his own problems and feeling sorry for himself. (much like I was last night ) He said he wanted me to be happy and we'd do what I wanted today. I made a nice salad lunch and then we drove down to a promenade we've been to before so I knew where the toilets were and where to park. It was busier than last time but we found a space. Then we walked along the prom *with him in the wheelchair* hurrah!! He was grudging at first, but I think he did appreciate that it was better. Back to car. Ice cream. I had a paddle in the sea. Yey! At last.) Then he said he'd walk to the toilets and I knew they were further than he thought, so I went with him with the chair. Do you know he walked sooo much better because he wasn't panicking about freezing or his knee hurting too much. When he couldn't walk any more, he just got in the chair. A major breakthrough - fingers crossed! Back to car and I walked into town to fetch us pizza and wedges. Nom Nom Nom. Spent ages, sat in the car, eating pizza, drinking tea (I bought the flask today!) watching the boats on the sea and all the goings on on the beach and the prom. In the end it was me that had to drag HIM away. He's so much more relaxed tonight, but he'll never admit he enjoyed today! :p It's all I wanted. A proper day at the seaside. I'm happy now. No more bench smashing.   I've restored both the CSL bench and the FF bench to their former glory and I'm currently supping tea on the Good Citizen bench. Whilst waiting for the pizza, I went outside and saw a debit card on the floor under a bench. It didn't belong to the lady sitting on the bench so I took it back into the pizza shop (pub game: match the spots!) and asked if the Mr G P***** might be a customer of theirs. The guy pointed to his colleague! The card belonged to someone who worked in the pizza shop and  he didn't even know he'd lost it!! He was soooo grateful. I'm glad I stopped somebody else using it contactlessly (is that even a word?) and clearing out his account. Pats self on head. :D   Tomorrow, I will let OH choose what we do.  ... View more

Just smashed the CSL bench to pieces with the FF one. Sorry. I will replace it.   OH just said that my melt down upset him and that HE's the one that is ill. He actually said, "You're killing me" (Don't even tempt me!!) Oh. Sorry. I temporarily forgot that I'm not allowed to have feelings and frustrations even though my life is hugely restricted by this **** disease too. Grrrrrr.   I so need a proper holiday, but that's not going to happen.    Right. Got to stop feeling sorry for myself - or letting him see when I'm struggling . Onwards and upwards. Paste the smile back on.  ... View more

Just had a bit of a melt down that I didn't manage to hide from OH. 2 days of nearly constant wind and rain when we've been stuck in the cottage. I did manage to nip to the local shop on Saturday, and had a walk for about an hour after the rain stopped yesterday, but otherwise we've been pretty cooped up. Today has been sunny, on and off, so after lunch, we set off for a nearby seaside town to test the sat nav. Worked great. Got there fine, but then the troubles started! Usual problem of where to park. OH still not using wheelchair. I found a space on the prom. OH said he'd had a panic attack in the car and his chest hurt. :( We hobbled to a bench. When he felt better, I went off to find a supermarket for a quick food shop. As usual, bought more than I intended and had to carry it all back to the car. On the way back I met OH struggling to walk the 300 yards to the toilets. "Stay there. I'll get the car." Nightmare getting out of parking space and when I eventually get back to OH, a well meaning but thoroughly annoying man had forced him to sit on a chair, fetched from a nearby kiosk, because he looked so unwell, despite his assurances that I was on my way and he was fine. I thought something terrible had happened! Anyway. Drive to loos. Then he says he wanted to "get away from the traffic to a quiet park inland somewhere" Oh. OK. I'll just conjure one up shall I? Study map - and sat nav - can't find anywhere suitable. Want cup of tea. Desperately. Find cafe. It's nearly 5, so it's closing. OH announces we may as well go back to cottage. So I drive back.  "It's a good job I bought something we can have for dinner" "Why wouldn't you?" BECAUSE I THOUGHT WE MIGHT ACTUALLY EAT OUT SOMEWHERE SO I DONT HAVE TO COOK..... AGAIN!! Shouted that in my head, not out loud, of course! So, we finally got to go out and all I did was the food shop and run around after him. I was ****ed off to say the least. Alternating between the CSL bench and the FF one. I've put them next to each other so I can have one buttock on each. Steak pie is cooking in oven and I've prepped some veg. So much for a paddle in the sea and a pub meal. :( It may have made him realise that it'll make my life easier if he'd use the damn chair! He's also said he should have agreed to try the other anti d.s before we came away. So some progress, I suppose. Rant over. Normality - the latest version of it anyway - will be restored shortly.  ... View more

PS no daft rules, Katy. :D PPS sooo glad I fought to get the Blue badge. Used it 3 times today. And it's free to park here with a BB! Yay! ... View more

Wednesday, we went into town. Dropped off OH outside a charity shop and found somewhere to park. Went to catalogue shopping place to order a satnav. Returned to where I left OH. Not there, but I found him on a nearby bench! Visited a lovely little art gallery with loads of nice paintings/photographs by local artists, but he couldn't stand up for long enough to appreciate everything. Over a cup of tea, outside the cafe next door, I broached the subject of the wheelchair, saying how much easier it would be for both of us. He said he doesn't feel safe in it. Ah. There we have it! I said he'd probably get used to it and any of the nearby promenades (there's, literally, MILES of promenade around here) would be a great place to start. He seemed to agree but then was determined to walk with me back to the car - to prove he doesn't need the chair? - He made it to just round the corner from the car park and I fetched the car to pick him up. Yesterday he was overtired, probably in pain and in a megasulk! :( I left him to rest in the cottage and went off for a walk for a couple of hours.  Today has been much better. We went to a park, parked in a disabled space, with a nice view of the boating lake and the sea in the distance, and I left him to potter about near/in the car while I legged it into town to pick up the satnav and some loo roll (that was a faff: went into 3 shops before I found a pack with less than 12 rolls! We're in a holiday cottage; I don't need 18 bog rolls for just over a week and they're bulky to take home!!) picnic lunch in the car. Drive to the promenade to look at the sea and eat an ice cream. Swim in leisure centre pool then chippy tea in a cafe on the way back to cottage. Longest day out we've had in a very long time. OH in a great mood tonight. But tomorrow????!!! I'm on the kn*****ed  bench, never mind him! Ah well. I'll have the satnav to play with. If I can get it set up: this old dog's going to have to learn a new trick! :p   ... View more

Glad you survived the babysitting Katy. :)   I understand your reluctance to signpost your illness, grumpy, by getting a mobility scooter. You'll just have to tell everyone it's for ASBO boy? :p   OH needed a rest yesterday after the trauma of getting here, (!!) so I took a walk up to the shop and had a rece of the Indian Takeaway and the pub that are in walking distance - fo me anyway; he'd never manage it. There's a pavement all the way, so I could probably push the wheelchair but it's a bit hilly in places! Can't get him in the damn thing anyway. Grrrr. Went to Colwyn Bay today, in the car, because it is only a couple of miles away. Lovely, long, flat promenade (very like Norecambe!). Would have been ideal to push the wheelchair along - in fact there were lots of other people in wheelchairs and mobility scooters - but he refused. Just sat on a bench in a shelter, 50m from the car,  while I ran to and fro fetching ice cream, and his kindle from the car, before going for a stroll along the prom by myself, constantly stressing about whether he was OK, because he had a bit of a shaky, panicky episode this morning.   Apart from his aversion to 'the chair',  he's doing incredibly well though, so I shouldn't complain. Being on holiday really highlights how much less he can do now - and how much more I have to do: driving, navigating, finding parking right by where we need to be, when I don't even know where we need to be because we've never been here before! So used to bunging the car in the nearest car park and exploring on foot. Can't do that any more. I'm definitely going to have to work on him to get in the wheelchair. He thinks he'll be more trouble in it, I think, but it would make my life so much easier!! Softly, softly, gently, gently, we WILL get there!!   Going to try and buy a sat nav. (and learn how to use it!!) I managed to memorise the route to the promenade, today, but it was only just down the road; if we want to visit anywhere further afield, I'll need something to help me. Holidays! So relaxing?! Find myself wishing he liked coach tours! :p Still, the cottage is comfortable, has a lovely sun room and a garden to sit in - with a summerhouse that has a sea view: just about! :)  ... View more

We made it!! We've arrived. OH made a major effort this morning to keep his holiday panics and hideous mood at bay. Hurrah!   Took forever to get here as we had miles of 30mph due to the National Eisteddfod (no apparent need for the speed restriction though!) and OH can no longer navigate because he can't sit in the front of the car without panicking - and he can't think fast enough to follow a map either, so we got lost and ended up going to Llandudno for something to eat and for me to have a desperately needed wee! Public toilets shut at 4:30pm on a Sunday. What? What kind of seaside resort shuts its loos at 4:30?? Fruitless, frantic search for alternative facilities. I had to go into a pub. I chose one with outside seating so I could brazenly waltz in and pretend I was a customer! :p Then we went into a chippy restaurant, (that was right near where the car was parked,!) and there was a sign in the window saying it was part of the community toilet scheme and anyone could use their facilities. Oh. I take it back. Not such a **** seaside resort.   Hope your babysitting went well, Katy, or are you still secreted in the boot of my car? :p   Fatigue is horrible, Grumpy, but thank goodness for buses? Time to get yourself a mobility scooter maybe?  I'm sure ASBO boy will love riding in the basket on the front! :D ... View more

WeeeeeeeHooooooo! Dancing around the house. All clear. Fab news, Katy. Have another glitterberry juice.   Which reminds me: I always pick up any cans + bottles that people have left strewn around, on my way back from my chippy trip, and put them in our recycling bins. (readjusts recently polished halo :p). Anyway, the other week, I found a nearly full bottle of raspberry schnapps glitter 15% alcohol. I didn't try it; just tipped it away, but it did make me smile and think of BENCHLAND! :D   Left OH in pub and went to do supermarket shop. Told him I was on my way home but he asked for longer. I was only half way through putting the shopping away when he texted to be picked up. Told him he'll have to wait until it's all away and I've had this mugatea and a sit down!! Hmmm. That will come back and bite me?  ... View more

The girls got back OK. 5 hours after leaving here, but they stopped for food half way. GD was a "sleepy little angel" all the way which they put down to "magic nana" cuddles. :D   Good news you've found a better route to your YD's. She won't seem so far away now. Fingers crossed for appointment tomorrow, that it's all gone.   We've had a tough couple of days. OH' was great at the weekend, but the effort to try to appear 'normal' took it out of him and he's been anxious, depressed and extremely grumpy!! :( I was seriously doubting whether we'll get away on Sunday. He was talking about going back to docs this morning, but he's been much better today, though, and we've just been to the vol allotment. I've attacked a wilderness of weeds: (we've not been for 2 weeks because of the heat and rain) , planted a gazillion leeks and dug up a few spuds.  OH and a volunteer picked loads of broad beans that had gone over. They'll all go to waste. :( I hope he hasn't overdone it. Don't want him back in grumpy, shaky mode!   While I've been trapped at home with him, I've been quite the domestic goddess. Yes really! I know you're shocked. :p I've cleaned the cooker extractor and replaced the filter, defrosted the freezer, mowed the front lawn, made 12 jars of blackcurrant jam and knitted half a diminutive monkey (YD's best friend is pregnant and YD has asked me to knit a safari mobile for her). Wish dinner would hurry up and cook because I'm starving!!  ... View more