Simon update

How are you holding up ? A lot of different information getting thrown at you and it’s a lot to process . 
Good news on the aorta front . Do they think part of the pain is from the kidney stone ?

Hope today brings a bit of better news for you .

Court 

Morning as per usual no mri scan yet it's Saturday so won't expect anything today they are not sure about anything yet problem Simon won't ask just say thankyou for your help any questions no I'm having a lift this morning will ask nurses when this scan is but I know they can only give basic information bet it will be Monday result Tuesday this is soo long with no answers could be stone but strange pain lifted after pills stopped will be nice to see him long week but as per usual can't stay long when my lift is hanging around hopefully taking tablet charger sweets etc will keep him entertained thankyou for your support different hospitals i'm sure are quicker but I quess we have no choice my son was dealt with in Birmingham within hours and found he had a electrical fault with his heart I know nhs are soo busy .

Morning Jkee! Hope you're feeling a bit better and feel all the better for seeing Simon today. I get that, it's an absolute nightmare when the hospital is miles away and you can't get to it and some are not on bus routes and taxis are just so expensive and then you feel you are putting other people out having to give you a lift well that's how I feel. Yeah weekends don't think scans or anything get done but in saying that things have maybe changed there and if one is required they'll do it. I know the senior `bigwigs` are not on at weekends and it will maybe only junior doctors etc and as you say nurses who can only give limited information. Yes just take as much with you to keep Simon occupied. With Jay I was taking in his Kindle reader, mobile phone and on one occasion his portable DVD player (yes he still has one of those). that was `boredom breaker` when he was in High Dependency because there was no TV. Last time he was in recently in the urology ward he at least had a small TV in his room. Good that they have seen to your son too but that will be a worry for you also. Hope things pick up for you soon. Take Care. 

Vicky x

Hi Vicky spent a couple of hours with him gosh he looked soo thin and pale bless my heart broke. Just had a thought when with him he was meant to have the 3rd week injections on Wednesday to replace his blood cells now he is off chemo does he still do it but of course no one to ask will have to wait until Monday. One whole week getting no one just wish he was in a cancer hospital oncology ward where he would have been dealt with quicker or maybe not you travel there and bad and just feel flat hope things keep positive with you we all deserve a break at some point xx

Sending you all our love and support . It’s not easy going through this and not sure what to do at times .

Court 

Thanks Jkee!  Yes Jay has lost loads of weight too- aroung 5 stone. At the start of his cancer `journey` he weighed about 22/23 stone which in `new money` is I believe 143kg and classed as `obese` but he has always been a `big chunky fella` and I have never seen him any other way. Just that he did lose a bit when he was diagnosed with his type 2 diabetes but that was a `gradual loss` he is now around 108/109kg which in old money is about 17 stone. The hospital though are satisfied with his weight and although he is the type that could have been doing with losing a bit, losing this way is not recommended. He always loved his food and that has gone too now. He is still eating ok but his portions have drastically reduced. About up to 5/6 years ago if I gave him what I give him now, he'd screw his face up and say to me `is that it`? and now it's `I don't want a lot` and is just about able to finish what is on his plate. Yes he's gone quite pale also and always cold as well. A few years back he would be walking about in the winter months with just a T shirt now he actually sits at home wanting jumpers etc on and I have to put the heating on for him too but this I think is just `old age` catching up with him as well after all he'll be 70 next year.  Yes I think its about time we all had a bit of a break somewhere but when that break happens, nobody knows. Take Care.

Vicky x

Hi Vicky sorry your going through this as well it's a lonely road for us been for a walk on my own more of a snail walk to clear my head. Spoke to Simon on facetime he looks drained but as usual his spirits are high to keep us all going dropped in conversation still has a ache in chest and back shoulder blades and that the mri is to check the vessels forgot to tell me that Simon when we ask are you in pain anywhere his reply don't want to worry you. Simon was on the larger size before covid then decided to eat healthy to give him a good chance if caught covid but it was creeping back on now he's just eating hospital food no snacks obviously either not hungry or something else I know him so well.Just have a gut feeling this week is going to throw a lot at us xx

I have been reading all your recent posts, & sympathise with all that you have both been going through over these past many weeks.I hope that this coming week will provide you more detailed answers to your questions right now. I also hope that you will have more positive news as to how the team will move forward with Simon's treatment.

I think that you need to write down all the questions that are concerning you both right now, & present them to the doctors who are looking after him. The best time to do this - is when they visit the wards in the morning. If you can be there with Simon first thing tomorrow morning, I think it would help you. (Unfortunately, you will never know the exact time when they visit.)

Best wishes

Marianne x

Thankyou Marianne Yes I agree I think I will see if someone can take me over in morning Simon only tells me things not to worry me really hope no more bad news x