Welcome back!

A pity party invitation

Hi
Today is another of my pity party days, I don’t have them too often but I am sure you all have days when you feel Very sorry for yourselves. Anyway you are all invited to join me . I have just had a shower and washed my hair which exhausted me. I struggled to get dressed and couldnt manage to put my socks on which tipped me into tears. My hip replacement is playing up on the right and my dodgy left hip and whatever is causing my ribs to spasm is preventing me from bending. I don’t have a cake or booze you will need to bring your own. Actually I do have one vanilla creme Danish pastry, it has my name all over it to the last delicious crumb. I am not sharing that today. You can have my woes and sorrows but you cannot have my Danish pastry. I haven’t the energy to dry my hair, so am sitting in my riser recliner chair, bare feet up, feeling rather negative. The weather isn’t helping my mood, glowering grey skies and Cornish muzzle. Not enticing me to walk. I have to make a decision about which electricity supply to choose, our previous agreement is expiring, I hate decisions, they are so difficult as you get into old age. Especially if you aren’t feeling well, I suspect I have a third vaccine hangover. I can’t get an appointment to talk to my GP for a week so will have to wait for the answers to my bending problems, and ask my poor husband who has a chest infection for help with the sock issue. I am his carer as he had a stroke 7 years ago.
One decision I have made is to make a coffee and demolish my Danish whilst reading a trashy novel, that might cheer me up. I will stagger our of my chair and talk nicely to the coffee pod machine and hope it isn’t having an off day too. Sorry about the moans but a good written rant does make me feel better especially as you probably understand what I am feeling, Marylin

7 Likes

Hi Marilyn, I understand some of how you feel - sometimes life can feel really overwhelming and especially with the difficulty with accessing GPs at the moment. I desperately need to speak to one but when I have rung and eventually get through they say they have run out of appointments and to ‘try again tomorrow’. The weather also can really affect people too! I felt rubbish after my vaccines and, although very necessary, they can definitely make you feel knocked out. I had to do some writing work after my third and I was just too tired and foggy-headed to make a good job of it. In these circumstances I think you have to write it off as a ‘bad day’, acknowledge it as that and then just find something, like your trashy novel and your Danish pastry, to take your mind off things and not feel guilty about not completing the things you set out to do. Tomorrow, or even in a few days time you might feel much more up for doing things! Take care x

3 Likes

Oh, @Marylin I think I really need to come to your pity party, I will be a very well behaved guest apart from some ranting, moaning and groaning, but I will bring copious supplies of cake and hot chocolate.
You chose the right day to post, I had an op on the top of my head on Monday and I think it has caught up with me today. I ache from head to foot and I really struggled to complete my walk this morning.
I wore a very fetching scarf as it was windy and I am trying to keep a big plaster on the top of my head. Have you ever tried to keep a plaster on the top of your head???
I took the scarf off but couldn’t be bothered to look in the mirror and comb my hair.
The hospital said see your GP practice nurse in 48 hrs to have the dressing changed. I knew there was no way I would get an appointment that soon, and I haven’t !!
I am sitting here with 3 pairs of socks on, which I wear under my walking wellies, because I don’t feel I have the energy to take them off.
Oh, changing energy suppliers would be far to stressful for me today.
We haven’t even got a coffee machine, that’s why we never drink it.
My husband has just got out of hospital and is more absorbed with himself than with me and people are ringing up asking about him and not me.
Anyway it is chicken curry tonight, one of my favourites and I have precooked it so it is just popping it into the oven. I just hope that I still fancy it after all the cake and hot chocolate !!!
Perhaps I have better just raise my mug to you from afar, as it would probably be a 7 hr drive to get to your party, moan and groan. I have a crossword from the weekend to do.
P.s just remembered the bed needs clean sheeting and that duvet is bigger and stronger than me, I feel another moan coming on.
Thanks so much I feel so much better now after my moans.
Aren’t we lucky to have our forum, you are not alone, hang in there, keep posting, tomorrow is another day.

4 Likes

Let’s all have some cake and treats today! Sounds like we all need it! Sending you all lots of love X

4 Likes

Hi @Marylin and @Erica, I’m so sorry that you feel so rubbish today. I would love to join the party, my back aches if that qualifies me! Too much stem cell growth hormone, either to few neutraphiles or too many, never the right amount. I think Danish Pastry and a curry this evening is definately the way forward for you both. I’ve just put on The Nightmare Before Christmas for a bit of escapism and to get into the Halloween spirit. Please both take care of yourselves and take it easy today. Sending party vibes and virtual hugs :hugs: :hugs: xx

3 Likes

May I join in too? I’m having one of those days too but for no particular reason. On awakening I could have done a lot but after my shower all my energy had disappeared and didn’t even bother with a walk because I didn’t want to see people in a different world today. Have, this afternoon, managed to find some energy to make some pitta bread but the yeast must be having an off day too. My online deliveries refuse to supply me so needs must, however, if the yeast doesn’t do it’s job I may have to rush down to you for whatever might be left by the time I get there from Yorkshire. Hopefully, we will all feel more like ourselves soon, we are allowed off days and they do pass. Right off to peep at my reluctant yeast. Take care everyone.

2 Likes

You take care of yourself to x

1 Like

Take care of yourself. This is turning in to a big party! Good we can all share how our day is going X

1 Like

Of course you can join us @Lababe and @Lyn99 and @Lababe it sounds as if your yeast needs to come too.

1 Like

Hi to all my party guests, how nice of you to join me. I have spent the night worrying that my post might have been taken down as too negative. However it seems that quite a few of us are experiencing really down days. Partly I am convinced because the NHS prop is no longer available to us at point of need. Instead we find ourselves in a somewhat adversarial situation where it is a fight to access help. Most of our GPs only work 2 or 3 days a week, so really they are not available to access for half the week. We get fobbed off to paramedics by receptionists, paramedics then refer us to a GP. Bill and I are now in a BOGOF situation, he needed to speak to a Dr, I have to speak for him as his stroke caused dysphasia, and I need to talk to a Dr, so we are both going to be dealt with in one phone call. I did manage to book my blood test for the next haematology consultation, hopefully the red cell issue will have resolved itself or a Dracula session threatens. My red cells and platelets seem to be Samba-ing up and down.
With regard to the Electricity situation, my daughter said money man Martin thingy? Recommends do nothing, locking oneself into a three year contract at this moment is not a good idea. I told my daughter that at the moment I excell at doing nothing! Decision made, hurrah!

I will do nothing today in my relax and recliner G plan chair (£150) from the Plymouth Heart Foundation charity shop, an absolute bargain. My husband has one from there too. If my treasure of a carer will solve my sock issue I will totter out for a damp amble round the estate. I need to walk off my indulgent slice of buttered toast slathered with Frank Cooper’s deliciously dark Oxford marmalade., and await the other half of Bill’s flat pack mobility scooter to arrive. We have the seat , the arms a a large wire basket, but no wheels, handlebars, battery or control panel. My son in NZ ordered it from China, I suspect it is either on a ship queueing to be unloaded, or in a container on the Felixstowe dockside. The one he ordered for me hasn’t even appeared on the horizon. He insisted on giving us one each. I suspect this may cause a parking issue. Nothing these days is ever straightforward.

Thank you all for coming and bringing all your issues to the party, come and join me any time you feel like it, I hope you are all feeling a little less down for your visit. Marylin
PS I know there is some way I can include you all in one reply but I have forgotten, is there a way to access a guide to using this forum?

2 Likes

Hi @Marylin. I think it’s great that everybody was able to share how they were/are feeling. Sometimes it can be quite lonely and we think we are the only ones feeling low. It’s so good to get it all off your chest and even better that we can all support each other through it!
I really hope you get all the parts for the mobility scooter. I have an image of what it looks like now!
Enjoy your day relaxing in your recliner X

2 Likes

Well Marilyn I definitely like your Danish pastry solution to all bad days as I very much tend on the same theory myself :grinning::stuck_out_tongue_winking_eye: As you see you have the empathy and feeling of many of us on here, it’s not an easy time of late that comes in addition to all dealt with already with our blood cancer and that never ending fatigue we all seem to be plagued with, no energy for any of it out there then comes to mind!! I actually think a sweet treat, or indeed a chicken curry as per Erica, is something we can enjoy and does good, the description of comfort food comes to mind and sometimes just rest, enjoy something we like watch an old film etc etc and let the mind wander, what I call “stare into space” mode. So you are not alone, we already deal with a lot that most have no idea what is being coped with (we all get the but you look so well comments) and add to all of late the pandemic scenario with all its knock on effects for us, can become too much and I know I have had enough of it all days, so you keep posting on your days like that !! Had a morning like that today, took myself in car to dogs usual park but without the dog (she did look confused when I went out without her!) just parked up, bought a good coffee and caramel shortbread from the coffee van and had it sat looking at the ducks and swans - same solution you see more cake!! All the best Marilyn and you too Erica hope the head wound starts to ease a little for you these next days.

3 Likes

Thank you for the invite, it made a huge difference to be able to share an off day. It clearly helped as I bashed out the pitta dough and it worked!! A few tweaks next time and I may achieve perfection :thinking:.
We should all meet more often as other people, not dealing with the extra burden of a blood cancer diagnosis, really do not understand what this pandemic has done to our lives. In addition to the “ but you look well” is the “ oh we’re not doing much either” and then proceed to tell you what they’ve done!
The sun is currently shining here in my part of Yorkshire and although not set to continue it helps. Continue with the prescription of coffee and your chosen treat to get you through the bad days.

3 Likes

I feel very honoured to have been allowed to join you at your pity party yesterday @Marylin, albeit virtually.
Thanks so much for updating us today as well.
What a brilliant idea to have a BOGOF Dr appointment a win - win situation.
I see things very visually and have a brilliant image of your red cells and platelets Samba-ing up and down.
Good decision with your electricity supply, if in doubt do nought.
I can tell that you are a girl for a recliner bargain and I hope you are good with flat packs when your mobility scooters arrive in installments.
Your party did wonders for me, even virtually, and I am feeling more like my usual self today.
Perhaps the copious cake, hot chocolate and chicken curry also contributed to my more normal services being resumed here.
As far as I know, I am not good technically, I press the ‘reply’ button at the bottom of one persons post and when I start responding I use the ‘@’ button and either type the persons name or a list of names appears and I can click on the name and I add each persons name like that.
Thanks so much @Marylin you were and are just what the doctor ordered and you made me reflect on what was going on for me.
Look after yourself

2 Likes

P.s. @Marylin there is a link to the getting started guide at the top of each page.

1 Like

Hi All

Sorry Erica can’t find the link you mention at the top of the page, what does it look like? I use a mini IPad.

Yesterday I was awoken from an extended after lunch nap (nearly an after tea nap as well) by the doorbell, anybody who has an r and r chair will know the difficulty of getting out of it in a hurry, it is almost impossible. It was the other half of the mobility scooter or as it is variously described in the brief handbook, as ‘a smart and lightweight folding four wheeled travel tool’ and ‘a sporting entertainment tool.’ The booklet warns against ‘turning violently’. The booklet is hilarious apparently there is ‘a way of parking to prevent uneven road slipping.’ Remind me to keep an eye on the sleeping policeman out side our bungalow in case he slips. It is full of dire warnings of things that could happen when operating this vehicle, after reading the whole it is sounding like a weapon of mass destruction. It only took us about an hour to work out how to unfold it and attach the seat, we will attempt to attach other bits, the lights, arms, baskets, today. Then it will be time to get to grips with this tool. Can’t wait. We have driven other types but wanted one that would go in the car as I love to visit gardens and am fed up with not being able to visit the distant parts. Below is the half assembled item. If nothing else it has taken my mind off my annoying leg, hip and torso muscles that have started cramping again since the third jab.Marylin image|666x500

3 Likes

That picture made me chuckle. I’d been imagining whatnot looked like :joy:. Can’t wait to see the finished product!

1 Like

I am really sorry @Marylin, I was so impressed with my technical expertise, but you are right, I work on my laptop usually and I have just looked via my mobile and I cannot find the header either It is 3 people with a great big purple rectangle over their picture with details of the forums terms of use, support services and a guide to getting started.
I will copy this to @BloodCancerUK with the hope they can help you, apologies again.
Yep, @Marylin it’s definitely a diversionary, blue, weapon of mass destruction and I hope that sleeping policeman has woken up and gone back to their duties now !!!

1 Like

Hi @Marylin @Erica,

I have looked on my phone and if you scroll down to the heading ‘Welcome to Blood Cancer UK’ you will see the guide to getting started under this heading. I hope this is the same as on your IPAD mini.

. I have included a screenshot.

Best Wishes

Jo

1 Like

Thanks Jo, I will give it a go.
I have managed to get it, thanks, on my phone, but more by luck than judgement I think, and now when I open my screen it’s got the banner that I have on my laptop.

1 Like