Pessimistic and no faith!

Good afternoon.

Don't apologise, no problem at all. I hope the things on your mind are not bad things and if they are let me know if I can do anything to help.

Helen did pop in. We discussed the pain relief and leaving things as they are. Given that the Oramorph calms both the tumour and breathing seems like a good idea. We also discussed the steroids. She too thinks it was wrong that they took it away altogether. She said she is going to have a chat with Hayward House and get their opinion on the matter. 

Yes it is dreadful having to check first if chemo is ready. But I'd rather be waiting comfortable at home than sat in there. It did work better for me. Chemo went well too. There were no problems and picc line worked well. I've clearly got lucky and had a good week this week.

Occupational Therapy called. They're putting up a stair rail at the top of the stairs that helps me to stand back up when having to rest stop sometimes. She is asleep putting in a bath seat which I believe will be a great help. Physiotherapy also called and did some exercises with me around the breathing and heart issue and no strength in the legs. Quite surprising how bad I am and how little strength I actually have but I will make an effort to do the exercises as and when I can. 

I seem to have had a busy time of it. Other than that been pottering enjoyably at home and not felt too bad. Enough of my news. I'm sorry to hear you've had no response from your queries. Honestly!! What a load of twaddle!! Did you get your results and were they good news I hope so. Camera up the wotsit eeeek how did that go lol

Hope you're well and let me know your news. Take care X

Hi Marie,  good to hear you saw Helen, and  she's in agreement regarding pain relief, and your steroids, I thought stopping such a small dose, which was helping, a little harsh, fingers crossed  Hayward agree.

And lovely to hear chemotherapy went so well, and I'm 100% behind you, phone ahead, as you can't rely on them, was it different nurses you saw.

OT, have visited, was this an appointment,  or a courtesy call, it's good there supporting you and providing the aids you need, but poor girl must be tired falling asleep in the bathroom, and physiotherapist called round too, it was a good day, I do hope the exercises help, I don't want to sound harsh my friend, but you really must push yourself, and it's good to hear your feeling ok.

Hospital called, meds sorted, colonoscopy results good, bleeding due to radiotherapy damage and fissures. Bone scan, ribs clear, lower spine markers suggestive of cancer, I'm hopeful their wrong, they usually are, so not too bad.

Lesley, my kids mum and I are going to the Lakes at the weekend, she has something to tell me, I know it's not going to be good.

Say hi to D and A for me.

love Eddie xx 

Good morning.

The consultant at Hayward did agree. Helen contacted oncology and she was happy to reinstate steroids.That's good news huh.

It was the usual nurses I saw when I went for chemo. It was simply that the picc line was working and everything went to plan smoothly. Well, aside from having to call beforehand to see if treatments ready. But I'd rather do that than go and be sat there for six hours. I went to get my bloods done yesterday. Had the same guy again. All worked well and no problems. This is when you know it's a people problem rather than a me problem as they make me feel. 

Helen arranged the visit from OT and physiotherapy. They just popped in at her request. They've been before and provided me with some equipment. I don't yet use it but it's there for when I do need it should that be the case.

Bathing is a problem for me because of the picc line and not been able to get it wet. Would be nice to have a lovely long soak. The exercises were useful. Most of them didn't have a problem with but there was one I struggled with. Getting up from the couch without using my hands. Although the more I attempted it the better it became. I'll keep on keeping on. Happy to push myself but also happy to recognise my limitations.

Well, unfortunately, I have a urine infection. That came like a bolt from the blue yesterday. Did feel a little iffy when I went to the hospital and on getting home. GP sent it to be tested and they've issued antibiotics. Don't feel too bad this morning but shall be taking it easy. 

Really pleased to hear most of your test results were good. That's awesome news. That's wonderful that you are off to the lakes. I'm worried about what Lesley has to say mind. I really hope everyone is asleep good as can be under the circumstances. 

Take it easy and be careful. Hope to hear from you soon X

Good morning Marie.

That's good your back on the steroids, it seems a good decision, and sorted quickly too, and we all know it's those nurses at chemo who are the problem, as others have shown, I bet you were happy to see that guy again at bloods, yippee, and it's never your fault my friend, you do all they ask of you, they just won't admit their shortcomings.

I'm thinking of moving to Nottingham, so Helen can look after me lol, she's always on the ball, and gets things done quickly, as OT and physiotherapist dropping in shows.

The sit to stand exercises we're tough for me too, I started mine on a stool to ease my abdominal muscles back into work.3 other exercises I did alongside were.

Putting a soft football sized ball between my thighs and squeezing my legs together.

While sitting on the sofa lift one leg up and straighten it horizontally and hold for 3 seconds and repeat with the other leg.

Lastly and this really does help, when standing, raise one foot about 6 inches, I used to have a bit of wood to put it on, so most of your weight is on one leg, it not only helps strength the inner core but helps with balance, I did this one while waiting for the kettle to boil 

Oh Marie, I'm sorry you have a UTI,  but good to hear their on top of things, and it will be sorted in no time, drink plenty of water.

Thank you Marie, it's nice to get some good news, and I'm still a little hopeful regarding my spine, Lesley and I, didn't go to the Lakes today, She needs a little more time.

love Eddie xx 

Good morning.

Yes it is good to be back on the steroids. Although, not to be negative but the puffiness is a downside. You just have to get on with these things the best you can huh. 

Chemo went well again yesterday. Again, they forgot to call me to let me know treatment had arrived and I had to chase them up. But on arriving it all went well and I finished pretty quickly so I'm not complaining. 

I got prescribed antibiotics for the UTI infection over the weekend. So I rested up and finished them yesterday morning. Feeling much better! 

Were going on a break away on Thursday we have decided. Staying in a converted barn near Tavistock. With chickens apparently lol So looking forward to that. 

I will ask Helen to add you to her list lol You deserve it. She's an absolute legend. Really does get things done and is so helpful. I'm struggling with the exercises but I'm doing what I can when I can. I'm not going to be hard with myself especially on having this infection and not feeling the greatest. A couple of those exercises she's already given me to do. But there's a couple of new so thank you for them Eddie I will add them to my to do list. 

Sorry you didn't make the lakes but understand Lesley needing more time. I really hope she is ok. 

Anyway enough of me. That's all my news. How are you and what news have you?

Big love X

Hi Marie, sorry for the late reply, a busy, but  enjoyable day,'mostly, ' it's good to hear your back on the steroids, though as you say there's often a downside to many treatments, but as long as the benefits are worth it, we have to put up with the negatives.

Sorry again my friend, I forgot it was your chemotherapy day, I m really pleased it went pretty well, though a five second phone call from them, would have been nice, and the antibiotics are doing their thing, lots of positives.

We're going to Tavistock Marie,  I don't know what to say, lol, its a lovely place, I'm sure you will love it, Sheila and I went soon after we got together, and had a great time, , but if I remember, it wasn't a great place to eat, but there were many not too far away, have a wonderful time my friend, that's an order.

And I think I'm good with Bev my DN,  she's amazing as well, I can understand not all exercises suit you, there were a couple I couldn't do, or felt they were doing more harm than good, and it was a long time to get back a little fitness, and remember just doing everyday things goes a long way to helping your fitness, and be kind to yourself and listen to your body, at  my hospice  we did exercises, tailored to everyone, so simple,  but effective,  maybe Hayward do something similar.

Thank you Marie,  Lesley will tell me when she's ready, we had lunch together yesterday, which was nice , I have something to tell her also, but will wait till next week when I have all the information at hand. Not a day I'm looking forward too.

Busy couple of days, baby Mandy was christened yesterday, she looked like a little angel, a lovely evening having all the family together, though I  did have to leave for a few minutes when the dark thoughts came, all good now, today, hospice, counselling, gel plate printing, lunch with friends, massage and GP, our monthly catch up.

Tomorrow, eye test, hopefully nothing serious, first time in 51 years, bloods, back at GP, MIND appointment, volunteer  'work,' at hospice and Emma's taking me out for Dinner, lovely.

I'm doing ok, Lesley and Mandy's issues, are difficult  at times, my latest scan isn't encouraging, but maybe they are wrong 'again, ' and im going through the male menopause again lol.

I need a Holiday, Enjoy the chicken's, and Devon.

love Eddie xx 

Hi Marie, I hope you had a safe journey to Tavistock, and  have settled in, and began exploring the lovely county of Devon, one  of my favourites,  I hope you are still feeling well my friend and the sun is shining, and your pacing yourself, but  most importantly you are all having a wonderful time and switching off from from everything and enjoy the moment with loved ones, I look forward to hearing all about what you got up to when you get home, have fun my friend 

love Eddie xx 

Good morning Eddie. 

We travelled down Thursday and did have a safe journey thank you. Took all day mind and did little else but fish and chips. The barn is beautiful but not disability friendly. That's not what it said in the brochure lol I know what you mean about exercise. I have great difficulty in getting up from seated to upright position. I tried the exercises to help and did more harm than good. I'm not prepared to do that again. I'll concentrate on that which I can do. Mobility is rubbish. Because of the breathing problem. Use the wheelchair a lot. Needs must unfortunately.

On Friday we went to Dartmouth, Blackpool Sands and Totnes. Yesterday we took a look at the actual park, beautiful. And visited Moretonhampstead, Chagford, Oakhamton and on to Exeter. We finished off with a lovely lamb shank in a village pub. Lovely, it's all been very nice so far. 

You're right about pacing myself. Certainly seen a difference since we last came away. Not decided what we're doing today yet.

Enough of me! How is everything with you and yours? Hope everyone is doing good.

Big love X

Hi Marie, it is a long drive to Devon, but I bet the fish and chips were yummy, though I'm sorry your disabled friendly accommodation, wasn't, Marie, asking for wheelchair friendly places to stay, should add more facilities to the accommodation.

Absolutely my friend, do only what you can, when you can, have they discussed oxygen therapy for you.

Your certainly getting about, and to some lovely places, and it's a fab place to eat, as everything is fresh, all year round, in season, I know you love your cheese, if you see any Sharppham, cheeses there fab. Which places did you like the most, I have to say Dartmouth and Brixhan in south Devon are my fav's, I hope your having a lovely time today, your spoilt for choice, and D and A are enjoying it too.

I'm ok, getting older, have another MDT meeting Tuesday, should know a little more, hopefully!!!, Mandy has a scan this week, maybe she won't need to complete her chemotherapy, have fun, and we'll catch up when your home.

love Eddie xx 

Good morning. 

Last day today, home tomorrow. It's been fabulous but I'd be a liar if I said I wasn't tired. It rained buckets yesterday for a couple of hours in the afternoon. But still that didn't stop us. Did Tavistock, Brixham, Buckfast, Buckfastleigh, Oakhamton, Ashburton. All stunning places. Ashburton was my favourite. A complete coming together of everything I love. We have had some really nice meals in the village pubs. Absolutely yummy. It's been great. The only downside is everywhere is closed unfortunately. National Trust etc. So there's little or nothing to go see. Luckily there's been on the agenda anyway. 

I believe today we are going to salcombe and surrounding. And not found these cheeses yet. That's a must! You know how much I love my cheeses. D & A are loving it too. They are having much fun. 

How are you diddling? How did your meeting go and how is Mandy?

Big love x