Thanks Jenny
Love Debsxxx
Hi Debs
I was away for most of Berrygate but glad it had a happy ending. In my line of work, marketing, we’re always talking about ‘low hanging fruit’ but I don’t think we mean your berry LOL. The updates, as always, have been interesting and funny. Hope you are not too knocked out by the chemo this weekend. However it seems to have given you chemo brain as you did a massive typo in your post about your daughter - 40? - no way - what were you? - some kind of infant Mum?
Take care and hope you feel OK asap.
Nicky x
Hi Debs, Can you let us know if there is any more info regarding the problem you had with the dreaded “berry” ? Are they going to do any sort of biopsy? Hope you are doing ok now, LOL Scottishlass
Hi Scottishlass and everyone,
‘berry’ is being monitored whatever that means. I am hoping all my cancerous cells left my body via the ‘berry’.
Samantha my eldest daughter has been visiting, she was due to leave today but has decided to stay! Funny really she could not wait to grow up and leave home and here we are 40 years old and back home. Yesterday she did not bother to get dressed she spent the day as I did eating sleeping and reading. She did get out of bed to try on all my old lingerie and dresses so has a whole new wardrobe she is busy finishing ‘The Kite Flyer’ Ian played her the music I have chosen for my funeral bless, she sobbed buckets but I think she approves my choices.
Ian has gone to the farm shop as we have more guests arriving later. The house is turning into a B&B. Anyone on the way to St Ives the weather is wet and miserable.
Hope you are all well and coping with treatment or if you are lucky enough to be on a chemo break, enjoying every moment.
Love Debsxxx
Just got back from clinic and I have been very sleepy for the past 2 days and spent it in bed no energy, so I was not surprised to hear I am nuetrapenic again. Fingers wont press letters o the keyboard that I want them too!
Berry has come back as nothing mailgnant, may be that was the only bit of me that was cancer free!!!
I am so fed up with this tiredness I have nevr felt ill with this disease until this year and to be honest each month is getting worse instead of better. I want some life back, I want to stay awake and be able to walk from one room to the next, I want to be able to fancy some of my favourite foods and have a bl@@dy good drink. Oh dear I think I am going to be a bad grumpy patient.
Love Debsxxx
Hi Debs, sorry to hear you are feeling so tired, hope now they know your nuets are low they can give you something to make you feel more yourself. Good news re: the berry glad all ok with that problem. I often read your posts they are very informative. Take care of yourself love junieliz
Oh Debs
I’m sorry that you are feeling so tired it must be bad if you are having trouble with the keyboards. Hoping that you feel better soon
xxx
Hi Debbie
I hope your energy levels will imporve in time. It’s a bummer! Are getting injections for your neutrofils, they can make you feel all sore and achy as well eh. How’s you bloods holding up for your treatment just now, hope your managing to get it. My treatment is a hit or a miss just now due to low platelets and a pain in my liver that won’t go away unless I am on steriods.
So i am the opposite of yourself I suppose you don’t want to sleep and I have been up for over awwek now! It be nice if we could just get that balance.
I hope feeling more ill is not going to get you down because you are such a wee rock you know. Keep those positive thoughts for you new baby grandchild.
Oh and I believe that I can now top up my medicine in Scotland now, what a result - that’s a lot of my mind I can tell you.
Still have other issues - Nice said that they were going to put the end of life health care up from being cost effectinve at £30,000 to rumours of £70,000. If this is the case I want to make sure the Government here are pushed to do the same as well. Sorry i know your feeling crap but do you know anything about this, It’s just your so well informed Debs.
Lots of Love
Diane
Hi Diane,
forget the figures be lead by your oncologist and as long as there is a treatment available privately that she feels you would benefit from that is the lead for your argument. Cost can be argued later, they cannot under European law deny you any treatment that will extend your life. Avastin has given me 18 months extra life what price can you put on that? The co-payment law is badly flawed but each case has to to argued separately, cost of room, cost of nurse etc these all bump the price up but there are ways around it. To have the nurse come to your home to give you herceptin for example is costed at £70 an hour so how can they bump the price up to hundreds for avastin same nurse same cannula same time just a more expensive drug. It is easy to fight them nce you know what you need. As long as I am around I will help.
Happy Birthday for tomorrow.xxxx
Love Debsxxx
Hi everyone,
well I am still in bed! I have spent the whole weekend in bed asleep and I am still tired, have a bit of feeling i my fingers but they do miss the keyboard more than hitting it.
Ian has been busy cleaning the cars and sorting the ironing and washing, told him to keep on top of it just in case I have to go in hospital. Dogs look a bit bored of me Ian just looks worried to death, thank goodness for M&S ready meals.
This week I am going to contact undertakers to put plans in action. No I am not giving up I just think the more I can do the less my loved ones will have to sort out at a time they will be feeling really sad.
Well that’s the plan if I can stay awake long enough.
Hope you are all doing better than me, oh gosh don’t think I like this part of the downward slope.
Love Debsxxx
I don’t like this downward slope either, Debs. I wish I could hitch a ride to the top of the hill.
I have been either on the sofa or in bed since we came back from Cornwall on Saturday. I am off to the Marsden today to talk about starting MVP tomorrow but I honestly feel my platelets must be very low - I have no energy at all.
You are so blessed to have an understanding husband. My husband seems to think I need to get up and do something and it will make me feel better. I wish I had the strength to kick him where it hurts. He is coming to hospital with me this afternoon and I might ask them to spell it out for him what living with fatigue is all about.
Does anybody on here get any help in the form of carers etc who may be able at least to come in and get me something to eat? Next week the kids are all at school and husband is back to work and I do worry that I won’t have the strength to even make it to the kitchen.
Thinking of you, Debs.
Deirdre
Debs, you are so brave and such an inspiration to others on this forum.
love
Carol xx
I am very lucky that Ian works from home so he is on hand to do breakfast and then he goes to his office and as I mentioned M&S have some lovely fish dishes that I am able to enjoy, it is alot more difficult when you have a family waiting to be fed. I have got Ian cooking from scratch shin beef is an easy one just chuck it in an oven dish with onions garlick tin toms glass of red wine and 2 oxo cubes 3hours later a lovely supper for not much effort.
I think it is hard for them to understand how our energy just leaves us my daughter said ‘you need to walk about a bit keep your energy up’ well, I wish! this is easier said than done. How can we expect them to understand I can’t get my own head around it. Deirdre you will be sick of hearing people say ’ the sea air will have done you good’ B@llocks I breath it in every day! Mind you I still hope you enjoyed your holiday!
Carol, I don’t feel brave more scared sh^tless! but thanks for thinking of me. It so helps to know I am not alone.
Love Debsxxx
Hi Debs
Sorry, to hear you’re feeling so sh*te - I guess it’s the chemo and the neutropaenia doing that. Are you not having a Neulasta jab the day after chemo to stop this happening? I never felt so rough as I did when I was admited to hosp with neutopaenic sepsis. If I remember rightly that was the same day my brother had suggested I go for a walk to help my constipation - moron! You rest up, cos your body obviously needs it. I’m glad that Ian is such a dab hand in the kitchen - the shin beef sounds lush.
Deirdre, I have some misplaced anger which I could channel into a kick for your husband if you like. May I hitch to the top of the hill with you guys too?
love to all
xxx
Hi Debs
So sorry things are not getting better in terms of energy levels. At least it seems your fighting spirit is well and truly intact.
I guess your daughter is hoping she can help - difficult when you have never been there. I was on the other side of the fence when my mum had just had a hip replacement, I went round regularly to make sure she went for a walk, after the fact she told various people that I turned up to torture her!
M&S is definitely the way to go, followed up by Magnums or Ben and Jerry’s
Fiona
Well I’ve just returned from Spain - and actually the only time I can feel ‘normal’ is when everyone else is on holiday and they are either swimmin, sleepin or chillin and more sleepin, which apart from swimmin is about my daily routine. I’m going to have my meds assessed cos I am pretty fed up with feeling tired too. My onc was going to look into the possibility of ritalin, but I havn’t seen him since. Debs your body has been under a whole lot of pressure. Snuggle up and wait until it passess.
So sorry you aren’t getting any energy back Debs, I hope something comes right for you soon and you can have some freedom from the constraints of this disease.
Hugs
Nikki
Thinking of you ,and praying that somthing good happens for you soon ,and rant as much as you like theres always someone listening to you ,freda x
Hi debs
Just wanted to say that I’m thinking of you and hoping this utter bone weariness passes.
‘Snuggling up’ sounds like a good idea…
X
S
Hey hill climbers
Just to say I am thinking of you all and so frustrated by what you are going through. Wish there was something I could say or do for you all.
Love
Jane x