Double Whammy

Hi Tinalay, A break with your sisters sounds just the prescription the doctor ordered. I hope the weather is kind and you all have a lovely time.

Well, 4 years is really quite close, does that mean all four of you are going away, that would be fantastic. My older sister is 7 years older than me and my younger sister is 7 years younger than me. My brother was 2 years older than me, so we were very close, especially after our parents died.

Have a great time, let your hair down and don't think about anything but having fun!!

Oh how awful for you. Thats such a raft of bad news all at the same time. I hope you have a good support network for you and your brother. Up in Scotland so waiting to hear what tier we are in today.

I hope further treatment brings some positives for you

Debbie

Hi Tinnalay

sorry to hear your news.It doesn’t seem fair to have so much to deall with.I hope you get some good news from your blood  test. Take care xx

Thank you flowerlady We're really excited about our trip to Stamford, I've had a look on line and it looks pretty special.

The autumn colours seem to be particularly striking this year.

I hope the restrictions aren't too tough where you are. There seems to a fair bit of confusion around the guidelines for each tier.

xx

Hi ,

I'm sorry to hear that the chemo is no longer working but have my fingers crossed that you will be eligible for the new chemo.  I'm also sorry to hear about your brother, my father passed away from oesophageal cancer about 15 years ago when my son was six months old.  At the time he was deemed too old for surgery as he was in his early 70's but I know that things have progressed since then and surgical techniques have improved.

My Dad also struggled with a liquid diet, he had an operation on his throat to stretch the tumour which surrounded his oesophagus and was fed by drip for some days.  He was told that the drip could be removed and asked what he wanted to eat and chose the beef and vegetables.  He was devastated when they got his plate of food from the trolley, tipped it into a liquidiser and blended it up.  He said it was like drinking very thick gravy as a meal.

He was later prescribed the build up drinks which he did not like as he did not have a sweet tooth but found that by adding alcohol he could turn them into cocktails at which point he managed at least one each night,  Chocolate flavour and dark rum was his favourite.

Enjoy your treatment break and your trip with your sisters and I hope that you have a lovely time.  I am looking forward to the time when we can travel freely again.  I am missing the sun at the moment and would love to have a holiday abroad.  I'm not sure how they are sorting the tiers at the moment.  In Ryedale we have one of the lowest rates in the country but I only live about 16 miles from you but we are also in the North East and Yorkshire area when they quote the statistics which is quite high.  Not that it is making much difference to me at the moment as I'm not really going anywhere or seeing anyone outside my family and still do my main grocery shop online.

Wishing you and your brother all the best,

love and hugs,

Gragon xx

Thank you  I'm finding it so much harder to wait for my brothers results.

xx

Thank you Gragon  My brother has just had his 60th Birthday, but he's had a heart attack in the past and an episode of heart failure. We have a friend who had surgery for oesophageal cancer and her operation took 9 hours, it's a daunting prospect.Chocolate and dark rum sounds like a winning combination!

I'm really enjoying the treatment break but am getting frustrated by the small stuff. I had a call from my GP surgery to say I needed an annual review & blood test. I explained that I was having bloods taken at the hospital last Thurs and on Tues but was told I had to go to the surgery.

On Thurs the phlebotomists didn't know how much blood to take or what bottle to use and instead of ringing the lab or looking it up just went round in circles between themselves. The 1st person to try really struggled and then said he 'thought' he'd got enough blood. I asked him to check as the sample was going to London, and it was nowhere near enough.

The second person also struggled, I told her that the chemo nurses always put my hand in hot water for 10mins. She agreed that that would help but didn't do it. She then said she would have to use the other arm where I've had lymph node clearance. I've been told never to use that arm even for taking blood pressure because of the risk of infection and lymphoedema but she insisted she'd have to. In the end I said I wouldn't allow that and wanted to go up to the chemo unit, at which point she put my hand in hot water (the sink is behind the chair) and got the sample straight away.

On Mon I went to the surgery and the practice nurse couldn't get any blood so made another appointment, sigh. My hand is black and blue and tender. 

I don't usually sweat the small stuff but am back at the chemo centre for an injection tomorrow and will be raising my concerns.

It looks like the sun is coming out so a good time for a walk 

xx

Hi Tinalay, Yes I agree about the small stuff being annoying! Good for you not allowing them to take blood from that other arm! I have a pin in my right arm from the shoulder to elbow and was told by the surgeon never to allow them to take a BP reading from that arm as the reading wouldn't be accurate. I wish I had a £1 for each time a nurse told me, oh no it'll be fine and I said to them NO just use the other arm please! Then I heard the sighs as they moved the trolley round to the other side as if it was miles!!

It is horrible when they can't get blood. Some of the oncology nurses get it no problem from my arm but when I go for an MRI with contrast, it is always a problem! My hands are ten times worse. I even missed my slot in theatre last time because the anaesthetist couldn't get the cannula in. The surgeon was not amused! I wear thermal gloves and a lambs wool or cashmere sweater on my way to give blood, to keep everything warm, it works most of the time! (But can't be used in Theatre of course!). Maybe worth a try at your next appointment!

It seems crazy but when you are on treatment all these things are insignificant but when you are not they escalate to much more! Good luck with your next appointment! I have Opthalmology in the morning. And get three lots of eye drops, that sting like mad. They do an eye ultrasound, then I see the Consultant for the results about 20-30 mins later, so at least I don't have to wait weeks for results! I had a Malignant Melanoma at the back of my right eye, everyone insisted for 5 weeks it was just an infection.   Except when I went for screening for a combo Trial, there the consultant told me it was an MM and I was ruled out of that trial!

I do hope and pray after your lovely break with your sisters, you will get the good news you qualify for the new chemo!

Hi and Annette  anndanv 

I have the very same problem. Every 4, 6 or 8 weeks when I go for bloods there's one nurse at the surgery who will manage to get blood, not always the first time though.

Now, when I was having venesections (blood removal) at hospital every week as treatment for haemachromatosis, (see my profile, that's how my cancer was discovered) the nurses in the treatment room ALWAYS had me drink a cup of water while waiting because they said that it helps to make my veins swell and it's easier to take blood. 

I noticed neither of you two mentioned drinking water? Have either of you heard about that?

Look forward to hearing your answers!

Tvman xx 

Good point tvman being well hydrated makes a big difference. Unfortunately the scans with contrast are all fasting although fluids only for 2-4 hours. When I was on weekly bloods & weekly chemo it became such a ptoblem I was booked for a Hickman line, but it was cancelled because of Covid. If I’m eligible the next chemo is oral in 3 weekly cycles 

xx