Pessimistic and no faith!

Morning Marie, just to clarify, my last post, I said my new vet was close enough to walk "when I stop drinking, I meant driving",

Our long weekend in Scotland, became a day trip, Thursday drive to Ayr was cancelled, I was at the hospice with an old friend, who we sadly lost, bless him, my auntie has covid, and a friend has a nasty cold, so with chemotherapy for Mandy and maybe me soon, best to keep away, will see them next month if treatment allows. I did meet 2 friends from the forum in Glasgow and had a lovely few hours, and my girls had a few hours shopping in Edinburgh.

 I hope you get to Haddon Hall tomorrow, and a roast dinner sounds fab too, Mandy and I are/were going today but the weather is awful, it's better tomorrow, showers  and warm so hopefully you get a ticket and can go, we maybe go somewhere then.

Good to hear your burns healing well, did you ever see your TV nurse Marie, she is a part of your team still?,  anyway you've got nurse Dave, im sure he's doing a wonderful job, and isn't a bath fab, just 10 minutes soaking is sooooo nice 

So happy things are going smoothly at the hospital and side effects aren't too bad, just looking out the window, it's depressing, I hope it's a little better for you, say hi to D and A for me, looks like a baking day here.

love Eddie xx 

I waited 8 month for them to tell me I had incurable cancer in that 8 month I had evey scan and x Ray you could think of. They told me I had 6_ 12 months to live that was just over 2 years ago. I'm supposed to get scans every 3 months but not long ago I waited 5 month and my last one was August and they not doing another till end jan. So my head is battered. One the plus side I think we'll everything must be fine but on the not so plus side I think what if it's grew and they just leaving me. This nhs is broken 

Hi Bev, it's good to hear from you again, but so sorry for the reason why, that would be wonderful if everything was fine, and they are confident increasing the time between scans was safe, but it would be nice if they explained everything to you, I'm not surprised your heads spinning, it's not a nice position to be in, but great news your still doing well two years on. You showed them.

Bev, like you they weren't doing my scans regularly and changing dates, I talked to PALS, patient advice and liason service, and within a week my scans were sorted and have had no problems since.

I think we all think the worst at times, and why wouldn't we, but try to be positive, even we get good news sometimes, though I doubt they would just leave you, I  do agree with you, the NHS is broken. Take care.

Eddie xx

good morning. That's good that the vet is so handy for you and pleased to hear you are both pleased with the service.

Sorry to hear about your friend, that's sad. And I'm sorry to hear your trip to Scotland was all mucked up. Glad you made Glasgow mind and met friends. What a dreadful time you and yours are having with illness etc. These things really get you down and you don't need that on top of everything else. You're right though, things will get better and you do right in staying away from Mandy, hope she is keeping well by the way.

Same here, we didn't go to Hadden either. When I looked into it it is not disability friendly and unfortunately when we visit places I need it to be because I need my wheelchair in case I get that pain. Which we believe, I forgot to mention, Oncologist thinks it is a trapped nerve because of the tumour. The weather was dreadful here too. Later on it improved and we went to Clumber Park, had a lovely walk/wheelchair. There was meant to be a small christmas market but it had be cancelled on us arriving. I believe because of ground flooding. A little disappointed but still a nice time. On the way home we stopped for a roast at a local pub in Woodborough, it was lovely, very impressed. 

Nooooo, the TV nurse never got in touch. How rude huh. I believe because the wounds, by then, had already just about healed anyway. The DNs have now dropped another day. They will come on a Thursday. I will have my bath and Dave will do another day, he is doing an absolute grand job. I can't have a proper soak as I still can't get the wounds too wet, nor my picc  line. But still, I really look forward to what I can have. 

Chemo day today!!!! I'll let you know how goes it. How are you and what news have you?

Take care and enjoy your day X

Good morning Bev and thanks for chipping in, lovely to meet you. Wonderful news that you have done 2 years, that's ace. I myself didn't ask this question, I was way too scared. I still haven't. All I know is that at the time, I thought I had a week or something, catastrophising, but I've done a year. I hear you. They're the same with me with scans, like we'll do a scan, we'll not do a scan. My tumour is growing inwards/outwards it did once shrink. I could feel it/see it. They did do a scan and it had shrunk a little although unfortunately they don't know whether it was radiotherapy/chemotherapy that did it. I am having another round of the chemo to see whether or not it was that. You will be battered, it's to be expected. But remember how far you have come and what a truly amazing job you have done so far. It doesn't surprise me that you're having to wait an extra couple of months for your scan. They are so far behind here. Have you got a nice Oncologist? Can you discuss it? Good luck Bev, let us know how goes it. Take care X

Hi Marie, sorry I forgot it's your chemo day,I hope it went as well as hoped, with no unwanted issues, and I'm so sorry you have a trapped nerve, I know how painful they can be, I am surprised you never saw your TV nurse, thogh great to hear Dave is doing a fab job, maybe we can promote him to Dr Dave, fingers crossed you can have a proper soak soon,  I guess burn dressings are treated differently to other dressings, as you can can usually have a soak 48hrs after other dressings.

Weather Saturday was awful, but yesterday it was lovely so we went to the seaside,and it didn't start raining until we were half way home.

Maybe we will go to Haddon later,  but like you, a few people didn't like it, Clumber park is so much nicer, glad you enjoyed it, but what a shame about the Christmas market, and I've made a note about the Woodborough, if your impressed it must be good 

Thank you for your kind words regarding my friend, the Scotland trip will happen next month, we just added a day trip to Glasgow, we met two lovely friends, my girls did most of the driving so a lovely day.

Marie,I'm not keeping away from Mandy, only people with a bug/virus. Today was hospice and counselling, all good. Tomorrow is  MDT meetings for Mandy and me, we know what Mandy will be having, chemo, I will be signing my consent forms for chemo, but hoping for  2nd gen ADT, will let you know, and best wishes again for today, listen to your body and please take care.

love Eddie xx 

Hi so sorry for the late reply.  I dont normally see my oncologist i see a consultant pharmacist. I didnt ask thr question of how long a friend i took with me asked and i felt obliged to say yes . We are no longer friends anymore.  I hope everything goes well for you ill keep everything crossed x

Good morning. Don't apologise it's absolutely no problem. Chemo went well. I had just the usual anxiety when they put it in my system. But again it passed and I came good. I have been good all week with little or no side effects at present, hoorah for steroids huh.

I'm not sure if I have spoken to you about my high resting heart rate. I have had it a while now. On chemo day the registrar came to do some checks, the lung toxicity check. Everything was good but my heart rate was high again but it dropped below 120 and they continued with treatment. On getting home, later in the day he rang me to check it again and it was 123. I thought he was going to admit me but thank goodness he didn't. That stressed me a little. I told him him ringing me and chemo day stresses me. He agreed that would raise it.  I'm having an ECG next Monday. I've had this and an Echo recently and everything was fine. Yesterday it went down to 98 but I don't get much of those. We'll see huh.

PN came to see me yesterday, she is referring me hmmm somewhere, it's a long wait, for reflexology and some other anxiety help techniques. That's good huh. In the meantime another PN is coming next week to do a new technique on me. Sorry, forgot the name, I'll find out, she is ringing me today. PN Helen is also going to request to the Oncologist if I may stay on a low dose daily steroid permanently for the duration because of the quality of life they give me, it makes such a massive difference to me. She discussed long term effects but feels the good far outrides the bad. Watch this space on that one.   

Burns are all good. She is coming today. Yes, TV not turning up huh. They never contacted me either. But I guess the objective was to do as much as possible to enable me to start chemo and the fact I have means I have gone to the bottom of the list. I didn't know that about the bath. I have asked the question and they tell me not to get it too wet  or if I do change the dressing immediately after.

Enough of me lol Glad you went to the beach, I love it, makes my day. Did you go to Hadden? How is Mandy and how did meetings go please? Sorry, but what is 2nd gen EDT?

I really hope all has gone well for you both and I really hope you and family are all good. How are you and what plans have you? Yesterday we went to chatsworth christmas market. It was great, not too packed and lovely atmosphere and stalls. I got a couple of cutie christmas decorations and some lovely food, pork pies, sausage rolls etc. Was fab. 

Enjoy your day and take care X

good morning bev and I hope I find you well today and please don't apologise, no problem. Oh no Im so sorry about your friend but totally get your feelings. People do and say such strange things around cancer. Ignorance  huh. I'm sorry you had to go through that. Thank you for the well wishes, everything went as well as can be. Please take care and let us know your news when you receive it. Enjoy your day X

Hi Marie, sorry to hear of your anxiety at chemo, and it's good to know it passes quickly, and it's great to know the steroids are doing what they're supposed to, can I suggest you think about doing relaxation therapy, Maggies does one, either at the centre or online, it could help with your anxiety and stress.

I think you mentioned a heart problem a few months ago, when you were hospitalised with RRP, but I thought you were through it,

I am so sorry your  RHR is  so high, but I agree with you, being anxious and stressed could be a big factor, along with being less active, poor sleep and your illness, have you ever had a heart monitor on for a couple of days, during your least stressful days, that would give a truer picture, I hope your ECG again shows all's good.

Marie, Maggies does an anxiety course, and a few of my girl friends swear by yoga, and there is the relaxation course, but reflexology is sooo relaxing, anything that helps you relax and lowers your RHR is very good. and please let me know what this new technique is, I have lots of info on wellbeing, which I could photograph Email you, will let you decide.

I think Helen is amazing, I'm not surprised you want to stay on the steroids, not everyone, as you know, gets all the side effects, but please ask Helen the things you need to be aware of, and your burns being good is fab news, and I'm sure the TV nurse was involved in the background, your probably off the list LOL,.

Chatsworth sounds fab, yummies galore and a lovely atmosphere sounds perfect, I hope its on for a little longer yet. Please let me know.

No Haddon, we decided to go to the beach, just sat on our, you know what's for a couple of hours, enjoying the sunshine, for a couple of hours, then home.

Took Emma,  to Gunthorpe Bridge today to see her Uni friends, I went to Newark, to Waitrose, anyway on the way home, the saw a sign for Woodborough, so went for lunch at the Nags Head,

Mandys MDT  went as planned, she will have a scan in a couple of weeks and chemo will start January 2nd, so 1  happy old man.

love Eddie xx