Happy to P****d off in a few days!

Hi,

sorry you have been having a rough time.

good they found out what was wrong and having the vitamin D and the patches for pain should make things better for you.

i had a similar thing when I felt really ill taking the lenvatinib and it turned out the diuretic had caused me to have low sodium. The oncologist phoned  me at home telling me to stop the diuretic. I also then had to stop the lenvatinib as my BP went very high.

now I am on a different diuretic on a higher dose and was seen by the cardiologist. So today I restarted the lenvatinib and all seems ok with my blood pressure 

Ruth x

Gragon

There must be an epidemic of pernicious anaemia - you are the third person this month I know who has been diagnosed with it. Vit D deficiency is also thought to be widespread in UK due to our lack of sunlight in the winter ( and summer often!). Hope the jabs do their work and you feel better soon.

The hospital situation sounds horrendous and there so often seems to be a lack of thought as to what those changes will mean to people especially those who have no access to a car. As a political animal, I get very irate at the circumstances which lead to such decisions, which is often about the bottom line rather than the clinical issues. A good rant  at your local MP might be worth it, once you have some energy to spare!

Dear Gragon,

It must be a relief to get to the bottom of why you've been struggling for so long and to hear that there's treatment. You must have been feeling absolutely exhausted.

I've had treatment for pernicious anaemia in the past and it made a huge difference. Once I was on maintenance injections I found I couldn't last 3 months but needed the injections every 10 weeks. I didn't need a calendar to tell me when the injections were due.

It's so frustrating that because of staff shortages you now have to travel to go to Hull to attend your clinics, I'm sorry you have that additional stress to deal with. 

I hope you start to feel some energy returning soon, it'll make a big difference as you've probably been compensating for the decline for a lot longer than you realised.

xx

In the olden days treatment for pernicious anaemia was to eat large plates of raw liver every day, meaning the patients rarely survived....as they soon could not face it.....interesting fact for the day! Aren’t we lucky for modern medicine.

sorry to hear you have it gragon but glad you are getting treatment for it and I hope it quickly makes a difference.  And I am sorry to hear about the move of hospital, it is such a pain when these decisions get made.....

love heather xxx

Hi ownedbystaffies

I'm another who has pernicious anaemia, I was diagnosed with it probably 15 years ago and I also had to have B12 injections every month around the same time. Then came the Haemachromatosis diagnosis which in turn led eventually to my cancer diagnosis, Myelodysplasia. 

Just blood problem after blood problem!

Tvman xx

Hi Gragon

Honestly! It must feel as though the good lord gives with one hand and takes with the other. I do hope you’ll start to feel better soon on the patches and jabs. 

As a health reporter I used to read the documents that went to the boards about these decisions to centralise services. They never, as far as I recall, went into public transport or parking or patient journey times. Grrrrr! 

Lots of love 

xxx

Dear Gragon,

I am sorry you have not been feeling so well and hope you will get your energy back soon. What a pain about the hospitals, surely they could offer you a more appropriate alternative especially considering your tiredness, I think they should arrange transport for yourself and others or arrange to see the patients in your area on a specific day in  Scarborough, I don't suppose our local MP would be able to influence the move? Well I am missing your wisdom and advice on this forum so I hope we see you back soon but please take your time and get better first! Love Pat xx

Hi All,

In my original notification dated 24/1/20 it said that from 27th January 2020 all oncology appointments will now be in Hull.

I then received a letter dated 28/1/20 giving me an oncology appointment on 2nd March 2020 at Scarborough?

Today I received another letter dated 29/1/20 telling me that from 27th January 2020 all my oncology appointments will take place in Hull.

Left hand and right hand spring to mind!

Gragon xx

Hi Gragon I'm sorry to hear you've been having a hard time of it recently but it's good to hear from you! People seem to think that if the cancer is stable everything is ticketyboo, how wrong can they be. I struggled for 6-7 weeks with infections, viruses etc! My oncologist prescribed vitamin D tablets after ordering a blood test of vitamin D levels about 1 year after I started the cancer drug and I'm still on them! I also use Lidocane patches for pain plus Morphogesic etc they don't make it disappear but take the edge off it for a while. 

It's such a pity you have to travel further now for your oncology appointments. Everything seems to be about cut backs and saving money and not patient care. I'm lucky to have the Beatsòn Cancer Centre about 20minutes in the car from where I live but the parking is terrible. Usually my husband drops me at the door, then drives round to find a parking space before he can join me at the clinic. That's with a Blue Badge. As you can imagine, a lot of people have them!

I do hope you can access the trial via another hospital that is more convenient for you! Good luck!

Hi Gragon

Scandalous mate, absolutely b***** scandalous! You're doing well and then because of their failures in not having enough trained staff, or they can't arrange a couple of doctors to travel together(that would be too innovative as well as not being able to be more eco friendly), you have to travel further, whilst all the time worrying whether or not you're going to get parked. 

Surely it's best to have a patient who's not stressed because I believe a patient needs to arrive in a calm manner for treatment to be as effective as possible. It's not just about presenting a patient for treatment, there are other factors involved. Please don't tell me you have to pay for your parking or I will burst a blood vessel!

I'm not surprised you're annoyed Gragon, I would be too. I hope you find another hospital closer to you, then you can simply transfer and then you will be able to continue with your treatment and keep improving.

Just a footnote Gragon, you mentioned your CPAP machine, I had to google that, I'd never heard of it. It's to help you with sleeping? I don't know how you can sleep with that on, respect mate, respect. It reminds me of my last elbow operation when I had a strange contraption fitted to my arm that pulled my arm into my chest then extended it, 24/7. The noise of it and the movement wouldn't allow me to sleep! I hope you are managing better

Good luck with it mate, no wonder you have been a little quiet lately. 

Tvman