After care

Ice bucket challenge yesterday :) 27.8.14

As I sit here, enjoying my breakfast, planning my day; I feel well, healthy and positive.
Rewind to this day/date in 2011 and you would find a different Liz.
In March 2011 I was diagnosed with Hodgkin's Lymphoma 2A. My world crumbled and I had so much to take on board - treatment plans, hospital visits, no work for the foreseeable, sorting finances, adjusting to a new routine, being stuck in the house, finding a way to cope, dealing with chemotherapy and the side effects of hair loss, fatigue, nausea, bone pain.
Depression was never mentioned. No one ever sat me down at any point and said I could get depression. Looking back I feel that some sort of heads up about what would happen after treatment, would have been nice!
There was anger, frustration, grief, I lost so much from gaining cancer. I had to endure so much after a clear scan 2 cycles into treatment and I was just left to deal with it.

It was a segment on BBC breakfast that prompted me to write this blog. Reports that after care for cancer patients is poor. If you could have seen me as I was watching the TV!!
Bursting at the seams I was.
I am so passionate about good after care. What exists is POOR and for some people I have spoken to NON EXISTENT.

Aug 2011

When I finished treatment - I actually missed going to the hospital. I didn't really want to leave after that last chemotherapy session! Despite everyone telling me I would be skipping out of there. Well I was so fatigued I could barely walk... but the feeling to skip wasn't even there. I was terrified.
Those 8 months of routine and care from the hospital was over. The system leaves you feeling like 'Well Liz! You're fixed, be on your way and see ya!'
 No one stood at the ward door and warned me... 'well - you think it's over, it's not. You're going to want to run before you can walk, you're going to strive for every bit of normality and it will fail.  You'll go home and feel like shit when everyone is telling you how happy they are for you that it's over now. You'll find comfort in food and become so depressed you will feel worse than you did before you started chemo.' There is so much more I could add here by the way.

Sept 2011

OK, no one can see the future. AND everyone is different, of course! But what about this treatment plan for something called WELL BEING!?? What about putting something in place where the patient doesn't feel out on a limb and so lonely that they feel the fight wasn't worth it. Depression makes you feel that way and as I type that a huge lump in my throat appears and I gulp it down.

If this after care had been in place at the end of chemo, who is to say that I would have had to endure such pain and misery for so long?

9 months after chemo I finally felt like enough was enough and had the strength to speak up and contacted Cancer Support Bradford and Airedale via the hospital. I was very fortunate and the timing was impeccable - there was a pilot group starting at the centre. I was invited and joined the group. There were 6 other people, all with different stories and experiences. All the same as me, struggling a bit and finding life after cancer bloody hard work. We talked together, we laughed and cried together. We took part in activities and we even stayed in touch between groups and some of us even now still talk and keep in touch.
The group was my key to feeling like I WAS normal. I WAS going through similar things to other people and it was ok to feel the way I did.
I was lucky to have this after care even if it was some time after chemo. I am so grateful for what CSBA did for me.

March 2014

AFTER CARE SHOULD BE THERE FOR EVERYONE.

The system needs educating by the people who have been through it.