After a total of 34 treatments, 25 radiotherapy and 9 proton, I have finally finished the second of my three stages of treatment. I have finally graduated from UF Proton!
It was an emotional, bittersweet last few days and although I know this was a necessary and important step for me to make, I feel incredibly sad to be leaving such a special place. Until I myself was treated at UF Proton, I had no idea how amazing and unique the centre was; I had not yet felt the welcoming, open arms of the patients and staff there.
However, along with the sadness there does comes relief; this time I am getting somewhere with this treatment. Last time, when we came to Jacksonville just to be sent back within a week after finding my tumour had regrown, it felt like a massive slap in the face and an enormous setback. This time, the tumour has wisely stayed away and we have made it through to the other side (and onto chemo – how fab!). As Doctor Danny (the best radiologist in the world –
yes no he did didn’t pay me a fiver to say that) said, this was a long time coming. That’s why ringing Aud’s chime felt like such a momentous achievement and all the more special…
The UF Proton centre has a tradition where the patients ring a massive set of chimes called Aud’s Chime suspended from the first floor ceiling when they graduate. It is a tradition that before coming to the centre I would have had no intention in participating in.
That sounds awful and miserable but, believe it or not, before coming to the centre, I was not keen on getting myself into what I call a “cancer community”. That also sounds awful and miserable, but the reason for this is that I didn’t want to find myself in a support group, where I would have to talk lots about cancer, and I also didn’t want to grow attached to people that who were themselves very ill. I felt I would inevitably become very upset about their situations at a time when I wasn’t feeling particularly emotionally stable in the first place, and I wasn’t sure if I could cope with that. Yes, I guess that does sounds a little self involved and it is a little self involved, but at times like these I need to be a bit mindful about what is best for me.
I saw Aud’s Chime as a symbol of the community aspect of how things could be if I chose to get involved in such support groups.
Also, I thought it would be embarrassing!
If anything, my time at the centre has taught me how crazily misguided I was in my wishes to remain separate from the cancer community. Getting involved in the UF proton community has been nothing but a positive experience, and I can’t wait to tell you all about it in another post!
My time at UF Proton was a brilliant, beautiful experience. I honestly loved every second of it and if I could start and do it all again, I probably would. I understand that is a weird thing to say and I would imagine a lot of you cannot understand why I would say that, but I am not exaggerating when I say that UF Proton has got it 100% perfectly down. I cannot see a single thing that could be changed to make it better; from the moment I entered to the moment I left each day, I was surrounded by smiling, happy faces that knew my name and cared. And each day I can pretty much guarantee that even if I walked into the building in an awful mood (I can also pretty much guarantee that this happened on more than one occasion), within a few minutes of being in the centre I would be smiling.
I can feel myself getting carried away with praise for the centre so I will stop and leave that for another post as well.
Instead, for now I will remain much more self involved and keep to praising and banging on about myself – if you thought I was bad before, you ain’t seen nothing yet!
Congratulations to me for finishing and congratulations to everyone who supported me through this, whether it was medically, emotionally, by taking the time to read my blog or otherwise. I really am so grateful to all the people who have held my hand during these difficult times, literally and figuratively, and continued to, especially in these last few months. My surgery hit me hard and I have shut myself off from a lot of you a lot of the time as a coping mechanism, but I feel so lucky to have so many of you who have carried on reaching out to me even as I hid myself away. I can’t explain how much your constant reminders that I am valid and that I still exist in your worlds mean to me and how important they are. So thank you.
I also want to congratulate myself yet again, but for the final time (for now)!
This blog has been the best thing I have ever done and it sounds cheesy but I am so proud of it. And that feels good for me to be able to say. I am proud of this blog and I am proud of myself for finally getting through this stage. And I am proud of myself for having such fantastic friends and family. Thank you to you all and thank you UF Proton!
And to finish I will share with you the speech I made at the last proton “Lunch Bunch” I attended before my final proton treatment. The Lunch Bunch is a weekly lunch provided by the proton centre for all patients, alumni and their families. (This is just one of the fantastic aspects of life at the centre that makes treatment there into such a surprisingly positive experience)…
You can watch the video and read the transcript below.
Happy weekend and happy watching!
Hello. My name is Beth and I am from England. Tomorrow I will be having my 34th and final treatment for my Epithelioid Sarcoma, located in one of the bone cavities at the base of my spine, growing up my right sciatic nerve.
It is my second time at the proton centre, but this is the first time I have been able to say that I am graduating. I came here in August after I had undergone surgery in June, but on the third day my planning MRI showed that my sarcoma had grown back.
So we went back home, with the promise that if I was physically well enough we would be back for radiation vacation Mark 2. We never really thought I would ever make it back though.
In September I had a second, much more extensive eleven hour surgery. I will spare you the gory details but if you are particularly interested please come ask me. I have some cool X-rays and I love whipping them out and chatting about myself, so feel free. I have fab scars too, back and front.
Recovery was tough and I remember clearly two weeks post op lying in my hospital bed with one of surgeons telling me that I would be in Florida for proton in four weeks time. I nodded along, grinning, thinking he was brilliant but absolutely mad.
But somehow we got here. And now somehow I am graduating. It has been a complete blur that I feel so lucky to have got to experience. Everything about this place and this city is almost magical, and after being here for ten weeks I am ready to call it home.
This centre has something very special about it and it is something that I, although really loving my other hospitals, have not found to the same extent anywhere else.
It is that this centre has immense hope. It doesn’t matter who you are or where you come from or what you’re going through, this place offers hope to each and every one of us.
I want to say a few thank you’s, because this is the closest I’m going to get to an Oscars speech and a mention to each of these people is the very least I can do.
Dr Danny has been so patient and understanding, taking every paranoia and fear I have and replacing them with hope and security. He indulges my every delusion and my obsession with MRIs.
Amy is so kind and caring. She constantly goes the extra mile and experience has shown me her care extends far beyond my appointments.
Heather is the best social worker a gal could ask for. She is constantly making me laugh and she has given both me and my mum the most fantastic support.
My radiotherapy team: Hannah, Jo and Rick. They always made me laugh plus they got me loads of stuff. Once Jo had made me some socks to keep my feet warm on the table, I knew they were keepers.
Pam and Barbara are two of the gentlest, most wonderfully whimsical and creative people I have ever met. They managed to get me to pick up a needle and thread, something I hadn’t done since I was eleven after sewing the ribbons on my pink ballet pointe shoes with navy blue thread. I loved my time at proton and this table played a massive part in it.
Jerry is the warmest, most welcoming person I have ever had the pleasure of meeting. Each day she greets us with genuine interest and a smile. [Jerry is the receptionist in the UF Proton Centre.]
My proton team, who are so friendly and bubbly. I wish I had more treatments so that I could have got to know them more. If they want to add on a few so I can extend my stay, that’s cool with me.
I have met the loveliest people here and I have made friends for life. People here just get each other; there is some unspoken mutual understanding that we are all here to help each other get through this. I have never been anywhere where there is such a strong and proud sense of community, with unrivalled positivity and warmth. I have loved getting to know you all.
Even saying all this I can’t believe I am talking about a centre where, at the end of the day, I am at because of my cancer diagnosis. It is unbelievable that a place full of people who are so ill has made me feel so full of life.
Although I am in some ways happy and ready to go home, in most I am so sad to be leaving. This centre has been an escape for me at a time when I needed it most and it feels wrong to go home and leave behind a place that means so much to me and has given me so much. I hope I can visit again in the future and I know that whilst I may be going home, this is not goodbye for good.
Dr Danny said to me yesterday that in his eyes, I am a patient for life. This goes two ways; this centre will forever have a special place in my heart and I will miss it enormously. I hope that somehow someday I will find a way to give a little back to a place that I owe my life.