Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts

Thursday, 26 December 2013

Hospital Stay



A few weeks back we were doing the latest round of hospital living. My mum went in for more brain surgery to remove her reoccurred GBM tumor.

Over this three week period many items were purchased and/or packed to make her life on the inside more enjoyable. So in the spirit of helping others, here is what she found useful. I have also included tips regarding accommodation and food. Please note, this list is likely to vary from person to person, ailment to ailment:

Pyjamas that are stylish and don't look too much like pjs. You want something your loved one can wear during the day, visit the hospital cafe in and feel fairly respectable. CottonOn Body and Myer have great options. Make sure you have several pairs, include dressing gowns and socks. You will need enough to keep your patient stocked up while you do a laundry run.

Air diffusers such as the Dusk ones. They really make a stay more comfortable by keeping gross hospital smells to a minimum.

Audiobooks. Due to my mum's condition she found reading too hard but enjoyed having audiobooks, especially humorous ones.

Favourite toiletries including a luxurious hand cream. Any little treat turns into a big one when being prodded and hooked up to various devices. You can also give your loved one foot and hand rubs.

Pictures of people and things they love.
Noise cancellation earphones. Mum used these all the time not only to watch or listen to entertainment but also just to cancel out the beeps, groans and constant noise of a hospital ward.

Note pad and paper. To write down any questions they might have for doctors, lists, or random scribbles.

A nice throw for the bed. Much more homely and comfortable than the standard hospital corners.

A vase for all those flowers that get sent.
Pillows from home. As my mum often had to sleep sitting upright she found great comfort in having her favourite pillows from home. Don't forget to bring some extra pillow slips so they can be regularly washed (especially if you have a healing head incision on your hands).

Helpful tips for the carer:

If you have to travel interstate to care for your loved one, consider hiring an apartment instead of a hotel room. If you are staying near Royal North Shore in Sydney let me know and I can send you a great recommendation right in the St Leonards' Forum. Apartments are so much better because you have a home base including a kitchen to prepare meals, a washing machine and several bedrooms. As a family unit you can stay connected while having your own space. Try for somewhere walking distance to the hospital, public transport and a grocery store.

Shift work. With all of us having work and family commitments, our family took turns being in Sydney and coming back to Canberra. It is a long slog and the load has to be shared.

Find the best places for healthy meals close by. You will soon get sick of hospital cafe food and so will your loved one. Again, if staying near Royal North Shore let me know and I can tell you some of them. I can also let you know about a great Thai massage place too!


Hopefully the above helps in some small way. Over the last year I have had lots of time in hospitals so if you are ever after more advice or support just drop me a line, happy to help. Also, don't be afraid to comment with some of your own tips!!



Wednesday, 18 September 2013

Running and Stumbling


 Six months ago my family got one of the biggest shocks possible, and like the starting gun of a marathon we have been running and stumbling since.

My mother was diagnosed with a Stage IV Glioblastoma Multiforme (GBM) brain tumour.  Since then we have all survived her surgery, six weeks of radiation and monthly rounds of chemo. We wouldn't be able to do it without the incredible support we have received. Advice, practical love, listening ears and thoughtful gestures are carrying us when we feel like giving up.

So in honour of this and to 'pay it forward', here are two lists of ideas that you might find helpful if you are either caring for a loved one with cancer or are a friend of a carer. This is by no means a fool-proof guide on how to deal with such a difficult situation but rather what has worked for me so far.


If you are a carer:

* Two of my nearest and dearest girlfriends gave me this piece of advice about fighting cancer "remember it is a marathon, not a sprint". This has been so true. Try to pace yourself, make time just for you and be kind to yourself. You are no help to anyone if you are totally drained.

*Rally your team, delegate certain tasks and have a roster. This has really worked for my family. One of us deals with the finances and legal tasks while another two rotate being at appointments and giving home care. This allows for everyone to still maintain other life responsibilities and reduce burnout. We also have a family calendar which gets updated and circulated regularly so everyone knows when the next appointments/trips to Sydney are.

*Use a whiteboard in your kitchen and write down critical things especially the medications list including dosage instructions plus important phone numbers.

*Have a good record keeping system, even if it is just having one big folder for everything. Take it to all your appointments. You could be dealing with surgeons, oncologists, radiologists, physiotherapists, psychologists, nurse coordinators, occupational therapists, GPs and more. Inevitably they will ask for certain types of information so it is just easy to have it all on you.

*Fight for the best and don't stop until you get it. It is a harsh reality but when it comes to medical practitioners there is the super stars and then the not so good. Do you research, ask your contacts, find out who is the TOP GUN in their field and get them to look after your loved one. Never apologise for being pushy, this can be a life and death situation and I want the person with the best record for saving lives.

*Plan fun. With the gruelling schedule of appointments, feeling ill and just surviving you need to have fun, take the edge off and heal. Every Tuesday night mum, my sister and I have date night. Sometimes we go to the movies or a show. If mum is not feeling crash hot we just hang at her house. We have also planned a few small family trips.

*Be proactive. I'm not a doctor or in research and at times feel hopeless, so I have done some fundraising for different cancer related charities. It makes me feel like I'm doing something positive and contributing to a brighter future.

*Seek help. I'm always here to help if I can in some way. All you have to do is get in contact :)


If you are a friend of a carer

The best advice I can give is just DO SOMETHING! If it is from the heart it will be appreciated and radiate hope and love. Do what feels right to you. Here is some things people have done for me:

*sent a text or a Facebook message checking in
*cooked some meals
*sent flowers
*sent a handwritten card
*supported fundraising events
*called and listened
*shouted a pedicure and massage
*been physically present 
*allowed a flexible working environment so I can attend appointments
*looked after our pet while staying in Sydney
*cleaned our house and stocked the fridge before we returned home from Sydney
*provided mum free haircuts/head shaves
*helped with my sick toddler so I could get some sleep
*made me laugh
*allowed me to cry
*shared advice and experiences fom their own battles
*continued to be a support long after the initial shock
*been a true friend


Hopefully the above has helped in some way. In all of this it has been so humbling to receive such gracious gestures and to know how precious life truly is.

Xx