Bad news

Hi Lass Well, let me know when your new business venture starts and I'll be having a garage sale to pay for someone (anyone) to have my pain even for a few hours, so I can have a sleep! Sounds like you've found a niche in the market! I'm afraid Glasgow has similar weather to Edinburgh. We have a sheltered back garden and it seemed like a lovely sunny day. After doing a bit of gardening there, I thought I'd better tackle our front garden which is a corner plot. Wow! When I went through the side gate, the wind would have cut you in two, so very icy! Changed my mind and turned round back through the gate, straight to the kitchen for a lovely cup of tea! I'm a fair weather gardener these days. I used to be out no matter the season!

Hi there, hope you are having a pain free day and you have some sun too!

Hi anndanv

Pain still intractable but I spoke to my hospice nurse and we increased the pregabalin again. It’s not a drug that seems to provide instant results so I’m hoping the next 48 hours will bring some relief. We’ll speak again on Thursday. 

I emailed my oncologist (the very excellent senior registrar at the trials unit) to explain how much pain I’m in.  She called back to say my consultant can see me tomorrow (now today) in a bid to hurry the radiotherapy through. It’s the consultant who’s been in overall charge of my care since 2016 and who I thought had already left for a post at another hospital. Seems she hasn’t moved yet. So hurray! I thought I wouldn’t see her again. She’s the reason I’m still here. 

A friend will drive me up to London. I’m in no fit state to drive myself. It’s amazing how quickly things have changed. It was just a week ago I drove the 75 minute trip, walked the kilometre from the trials unit to the CT centre at the main hospital and back, sat in an upright chair for three hours and drove home. It wasn’t even a particularly big deal. Now look at me! 

So I think pain is going to be an unwelcome guest for a while yet. 

I started unpicking the move. My first call was to my daughter’s head of year at school to say can she (my daughter) please stay on? The answer was yes, we’d fight to keep her. So that was nice. I’ll start on emails and phone calls to solicitors and estate agents tomorrow. 

xx

Hope you get some good pain intervention today and you can return home more hopeful. You have such a lot to do, with everything that is happening. I know keeping busy can keep your mind off things you don't want to think about but as people keep telling me you have to look after yourself too. 

I do empathize with you the difference a few weeks has made in my own life has really shocked me and my family. Not so long ago I was trailing round a theme park with 2 very energetic grandchildren in the pouring rain having a whale of a time. Today my breathing and coughing is do bad I can hardly make it to the living room door. Gardening is reduced to my husband putting a few pots beside me and me weeding and if I am lucky a bit of watering. However I am still having some good days and getting a bit of sleep and those days keep you going. 

The dread is what do you do if there are no good days and will that mean the time is near? Getting answers to those questions is very difficult. However while we are still able we need to make the most of it and I am very grateful that pain is not a big enemy at present. 

Take care 

Hi Daloni, I am sorry it has taken me so long to respond, but I just didn’t know what to say. I am finding it very hard to believe. You are one of the incorrigible, incurable, indestructables! I just really want you to know that you are loved and that I am praying that something will turn up for you, at the very least that the painkillers will keep you comfortable until you can start your radiotherapy. 
I have spoken to Sue (Skaila) and she wanted to send you her hopes and love too. She isn’t seeing too well at the moment and is finding it hard to type a reply.

take care lovely and carry on being as happy as you can.

love and hugs

Maggie xx

Hi  I'm pleased to hear you will be seeing the Senior Registrar you particularly like and have faith in! Great you have your friend to take you!  You are right about Pregabalin it does take a while to build up in your system before you feel it's full effect. Let's hope that happens very soon!

What a nice thing for your daughter's head of year to say, that must make you both very pleased.  Regarding the list of things you say you will start on, emails, solicitors etc could you not delegate these to a trusted friend or family member or do you feel you must do everything yourself!

Once you have rested after your trip to London, please let us know how you got on. I hope and pray something positive comes from this meeting!! Stay safe my friend! I'm sure it will be a strange experience going into London when it's not overrun with people!

Take Care 

Hi! 
what an extraordinary day. I arrived to find the normally bustling cancer centre nearly empty with people waiting at the doors to ensure social distancing and keep it to patients only entering the building. I sanitised my hands and shouted my name across the  2m social distancing line to the receptionist. My name was up on the screen in five minutes and when I got to the upstairs waiting area I didn’t even sit down. I went straight in to see my consultant. It’s usually a 90 minute wait. 

She said, based on my symptoms and the intractability of the pain, that she feels the cancer is advancing fast and she’s still not clear from the various images whether to zap the kidney cancer or the spine tumour. She sent me off for another MRI and prescribed some steroids. 

I waited all of ten minutes for a porter and a wheelchair to get me to the MRI suite. We went through the underground corridors that connect the hospital buildings up the top of Tottenham Court Road. There was a five minute wait for the MRI and when this was over, a porter was waiting to take me back to the cancer centre to pick up the steroids. It’s unheard of - although it’s how it should be if the nhs were properly funded. 

The MRI was no fun. I had to lie flat and that gives me a lot of pain. Luckily it was 25 minutes this time as they just did the lumbar and pelvic region of my spine. It took over 40 to do the whole spine a fortnight ago. 

So the team will have another look at the images and decide what to do. 

I managed to talk to my consultant about her impending move to Guys hospital. It’s the hospital I started my treatment at and it’s a whole lot easier for me to reach. She said she starts there on May 1 and I can go with her. I’m so pleased. She’s going to book me an appointment in her Monday clinic. 

I am still in a quite staggering amount of pain but it feels like there’s a plan underway. Somehow that makes it slightly more bearable. I hope the pregabalin will help along with the steroids because I can’t carry on like this. 

xx

Alive

Hi Maggie 

thank you, my lovely. I like the idea of being an incurable, incorrigible, indestructible. How I wish it were true.

Give my love to Sue . She’s the real incorrigible - along with you. The tales of your cruises have just come to mind and made me smile 

lots of love xxx

Hi ,

Sorry that I haven't been here for a couple of days.  My head is still in a strange place but physically I have been doing well and spending time in the garden getting things sorted.  I'm trying to get some of my seedlings hardened off so that they can get planted out.

It was a lovely comment that your daughter's head teacher made about your daughter and I hope that she feels proud of herself.  She has been a real trooper though all of this.  Hopefully your eldest will be back in the fold soon as well and you will all be able to support each other.

It is also great that you get to go with your consultant.  I do think you should write a guide to the London hospitals oncology departments as you must have visited most of them by now.  I went for a blood test at my local surgery last week but it didn't go quite as smoothly as your visit to hospital.  However, I'm afraid that was my fault.  I was so wrapped up in wondering what the procedure would be for me to get in for my blood test that I forgot to take my blood test form.  I actually got into the practice and had sanitised my hands and was telling them why I was there when I realised that I had forgotten it.  Fortunately the let me jump back in the car and scoot off home to collect it and return.  It isn't far so I was back in ten minutes.  I'm still waiting to hear when my CT scan is and that determines when my next blood test and consultation will be as they want them all on the same day to reduce the number of times I go to hospital.  Unfortunately that means I won't get the result of the CT scan at the consultation but will talk to the oncologist a couple of weeks later.

I'm sorry that they haven't sorted the pain out yet but as you say hopefully the medication is just taking a little while to kick in and it will improve soon.

When I lived in County Durham many years ago one of the local gardeners grew a really tall sunflower.  When he was interviewed by the local press he said that his wife had come off the contraceptive pill but had quite a lot left so he ground them up and added them to the plant food he was using.  He thought the hormones were what had caused the plant to grow so tall.  It makes you wonder what sort of results we could get if we used the medications that we had left over from treatment changes!  I wouldn't recommend trying them on anything edible although it might be a more pleasant way to receive your treatment.

love and hugs,

Gragon xx

Hi   I'm so pleased to hear all went well today and especially without the normal few hours waiting. Yes, you are right of course, that is the way it should run normally but in a normal clinic there are usually four times the amount of patients than there should be.  I do think there aren't enough hours in the week for most oncologist's to see their patients!

Wow! So you must be her favourite patient then when she's even going to take you with her when she moves to Guys! It's the sensible thing to do. I'm sure when I feel relieved she is going to be looking after you then you must feel really relieved! This could be the prayers being answered because she has always fought hard in your corner and I can see that continue. Great you now seem to have a plan but I do wish they would find a solution regarding your pain. I hope the hospice come up with a cocktail that works!

I'll never learn! DAH! Another day today in bed with painful joints because I overdid it in the garden yesterday! Although in comparison to what I used to do, it took me two hours to do something that would have normally (before cancer) taken me about 10-15 minutes! My husband could have said "I told you" but he didn't. Instead he brought me up tea and toast and told me to stay in bed, I was banned from the garden except for supervising him!

It's still very windy here and quite cool when you are out the sun but the tulips,daffodils,anenamies etc I bought in Amsterdam are blossoming for yet another year!  As always, you are in my thoughts and prayers! Is it at the weekend or before your girl comes home from Uni?  Rest tomorrow after your busy day today! Take Care 

Hi Gragon

You’re a daft bugger. Honestly! Forgetting the crucial bit of paper sounds exactly the sort of thing I’d do, mind you. 

As for feeding plants on my left over drugs, I’m fairly confident they would shrivel up and die. That’s if they didn’t mutate overnight into human-devouring triffids. 

Your appointment schedule sounds complicated. Maybe they’ll phone you with scan results? That’s happening more and more frequently. I got my last results by phone. 

And as for you and your delusion that you might achieve a small job without a big pay back, anndanv Annette. Seriously, though, I understand the desire to live a bit normally and I’m sorry it’s landed you in bed. You’re husband is quite the living saint not to say “I told you so”. I hope tomorrow is a better day. 

My big girl is home on Friday, and not a day too soon. My little one is being amazing helping out with everything she can. I came home from hospital yesterday to the smell of freshly baked peanut butter cookies. We had one straight away with a cup of tea and then a  second later for dessert alongside some rich chocolate ice cream. Delicious. 

xxx