my dad was diagnosed 2 weeks ago and I had just moved 4 1/2 hours away. He starts treatment tomorrow and will be in for a month and wanted to get some advice on support I can provide even with the distance and just speak with others facing AML
Good morning Cathld98 and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I keep an eye on our various Blood Cancer groups.
I don’t have Acute Myeloid Leukaemia (AML) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Let’s look for group members to pick up on your post and get back to you. You can also click on the main ‘AML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
You may also want to join the Community’s general….
…… support group as there will be many people navigating the care challenges from a distance.
These Top Tips links are taken from a Lymphoma Site but the informations would still apply….,
Top tips for family, friends and carers
Top tips for the day of your chemotherapy
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
You may also find the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 helpful as this service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
Always around to help more or just to ch
On the back of Angel82 encouraging reply I can totally agree that distance can be overcome.
My initial 5 months of treatment was ok as it was done in our local hospital so family and friends regularly dropped in past….. but our youngest daughter lived 8 hours away so only did see her once during that time.
When I had my 2 Allograft (donor) Stem Cell Transplants (SCT) my wife and I had to stay in Glasgow (me in the ward and my wife had a family room next to the ward) for 4 weeks for my first SCT…. then 16 months later or my second SCT we were in a hotel for 3 weeks next to the hospital then me in the ward and my wife back in the family room for a further 4 weeks….
All our family and friends were now 3+ hours up North in Inverness with our youngest daughter 4.5 hours down South near Birmingham.
At this time both our daughters had little girls (6 months and 3 years) but our granddaughters were just not allowed (even if they could easily do the journey) in to see me in the SCT unit due to the significant infection risks….. little children are basically infection factors especially during treatment.
So daily FaceTime, regular old fashioned snail mail with the girls latest pictures for grandad and regular treat boxes went a long way to support me but also my wife.
My wife also arranged for some folks to ‘drop’ in past if they were able….. but I also arranged for a few very close friends to do the 7hr round trip just to take me wife out away from the ward.
My daughters also arranged for all our family and our friends to comment to a day when they would send me a WhatsApp message or a card…..
((hugs))
