As many blood cancer patients spend long spells in hospital I wanted to start this thread to share my experience and what got me through it and ask anyone else for their tips too!
What would you recommend to a newly diagnosed patient and their family?
Mine;
I used my Ipad and Sky Go to watch TV, box sets and films as the hospital TV was very expensive and limited. We paid to log onto the hospital Wifi which was a lot cheaper.
Toilet wipes, dry shampoo, anti bacterial wipes and hand gel!
Note pad to keep notes after you’ve seen your medical team and write any questions you may have so you don’t forget. Also I would get lots of people wanting to visit so would need to write down who was coming when so I did’t have everyone at once.
plenty of change for when the shop trolley comes around - you can buy papers, magazines and snacks
A fan as it gets hot at times
Plenty of PJ’s, underwear, lounge wear, comfortable clothes and any other home comforts.
knitting or sewing if you like that
Parking - if your family are visiting a lot they can get season tickets at the hospital reception which brings the cost down a lot, or look to see if there are other areas to part nearby
Hi Anna, such brilliant advice and practical tips. Luckily I have only spent short spells in hospital but I really found I had hot flushes and sweated a lot in there and I really needed a trusty deodorant.
For me panty liners are a must. I read a lot and listen to music so books/kindle and my Walkman are key to me and don’t forget the chargers. I am just off to a Zumba gold class now so I will give your post my thoughts as I walk into town. A brilliant post.
I got used to taking an overnight bag in the car with me to outpatient appointments as it saved my husband having to make an extra trip home when I was kept in for infections/high temperature, which happened more times than I care to remember. Great advice @AnnaMam and @Erica. Times have changed since I was in hospital a decade ago…no smartphones, wi-fi, box-sets etc I remember having an argument with Patientline who provided TV services, as G had booked 3 days as we didn’t realise how long I was going to be in for, and I was being moved between depts…cardiology, cardiothoracic, haematology, cardiothoracic, critical care, cardiology (all within a week) and i tried to extend my contract for a week, but they said I had to take a fresh contract. I just shouted down the phone “Thank you for being so helpful. I have just been told I have cancer” and slammed the phone down, turned round and my daughter had just arrived to see me. At least she was able to calm me down
Hi,ive only ever been in for consultant appointments or scans,so usually i take a book…im never apart from a book wherever i go. I must ask you all what on earth do you do when you have a pet scan,i find the hr waiting between the injection and the scan tedious, as an ultra active person, first time i ended reading the fire safety poster forwards then backwards over and over then started counting the metal studs on the lorry walls. Second time i took my ipod shuffle, i just don’t understand why i cant sit and read. I have my 3rd one coming up in about 3-4 weeks time.help!
I did laugh when I read that you had read the fire safety poster forwards then backwards over and over and the counting the metal studs on the lorry walls. If I am parted from my music I am just lost although there is always a tune playing inside me. Let us know your solutions to the HELP question!
Thanks Erica, definitely all of the things you have mentioned and I forgot to mention fragrance free moisturisers and Vaseline and Sudocrem which was a godsend for my sore bits!
Urgh that must have been awful for you. The hospital TV is so expensive and while I was in most people weren’t using them! If you are in for a long period you do get it free in the mornings… can’t imagine how you coped without the technology we have now though I did find it hard to concentrate on reading for long period which surprised me.
Actually I have done exactly the same, read and re-read posters, signs etc thousands of times and stared at the same painting too as well as the counting things. When you are in hospital for a long time I think you just know that you have no choice but to get on with it. You get used to drawing out every day things like getting washed to pass the time as well as chatting to the auxiliary staff as they change your bed daily. You get into a routine and end up sleeping a lot! Its nice sometimes when you are in with other lovely patients because you can have great conversations.
Hi,im the same,i have to occupy my mind,im yet to have treatment,on watch and wait. But i get easily bored,especially at pet scans. Outside of hospital visits i have numerous hobbies.
Hi Rebecca @NewYork2011. Ah, the lovely PET scan! I too was disappointed not to be able to take something to read. They did invite me to take my own CDs in, so I did sing along (or to the young lady’s next door). I did have a good chortle at the form with reasons why I could not be pregnant (I was 52 at the time) Ranging from I use condoms to I haven’t had intimate relations in 6months. I didn’t realise there could be so many reasons why I couldn’t be pregnant. Then avoiding young children and pregnant mothers afterwards, when i was desperate for coffee and food…and the cafe was in the Women’s Hospital.
Anna @AnnaMam my concentration was rubbish so I used to get the Fiction Special magazines, and then it didn’t matter if i couldn’t remember the characters in a story. At home I watched a lot of teen comedies with my son. I also listened to a lot of music (until I lost my hearing) then they used to try and put me in a room by myself with a CD player so that I could play music louder…and I was kept occupied by medical students coming to talk to me about my medical history, because i was always happy to do so. A couple of ladies and myself also used to have weird competitions like who had passed the most urine overnight.
That reply made me smile. Im an avid reader,a book by my side 24/7 when i sit and relax i read,if only i could during the hrs rest at the pet scan. My other hobbies are photography,drawing, painting, making cards,doing puzzles,crosswords,gardening,watching tv,writing my book.Always keep my mind occupied, even before my diagnosis.
Hi, your hobbies sound great, what are you writing your book about and what do you paint and in what mediums, lots of questions but I am honestly interested to know?
Writing about life since diagnosis and the serenity i get from going to our local park,im combining my journey with the parks history,with photos and sketches. I paint scenes from the park for my book,but i paint the natural world,flowers, animals, on cards for friends and family birthdays etc.
Actually thinking about what you say, I think I just went through life on auto pilot pre diagnosis and when I was diagnosed my fear and anxiety really made me quickly assess my life and as @pisces56 says the plus side of that was I realised what was important to me and I had not taken the time or opportunity to enjoy nature, music, time for friends etc. Another great plus is they are free, aren’t we lucky!!!
Hi, I was diagnosed with AML last year July. I had spent over a month each chemo cycle at the hospital. I definitely would mention all the things you’ve listed. On my good days I spent a lot of my time doing things that I enjoy e.g
1.I painted several landscapes using oil painting on canvas, was very relaxing and passed the time.
2. I also learned a language BSL. It helped me to have a routine and occupied from not thinking about my illness…(also I am a study freak)
3.I thought writing a short diary on how iam feeling helped to understand my emotions better.
4. I also wrote any questions like you mentioned, even if it’s a silly one, as well as record what they mentioned afterwards. I felt the big team of Dr comes like a tornado and go. That definitely helped me.
5.i also logged my platelets, red blood cells and neutrophils level every day so iam aware and don’t forget.
6. I always celebrated small progress e.g. when I was neutrophilic and went up by 0.1!
I wish everyone all the very best in our difficult time and keep strong.
Gosh, what practical achievements and you certainly turned what could be seen as a negative situation to a positive one. Thanks also for the practical tips. I have just finished logging my blood test results, I also like to keep my own watch on them. Please keep posting, there are so many different and interesting topics on here…
This is great, wish I’d been more with it during treatment but I was so poorly I could barely leave my bed. Its been since I’ve been at home recovering that I’ve done similar things, writing, learning new skills, organising charity events, learning all about AML, history, crafts and so on. I love to study too, or to have a problem and find a way to solve it.
I wish I’d kept more of a diary while I was having treatment but for some reason it just didn’t occur which is odd considering its the sort of thing I do, I think I was just in shock the whole way through!