Here are some notes for the hospice publication thingy. I’m not eloquent or a writer, but I’ve given it a go!
Gosh, what a surprise to be asked one day at the Sunrise Centre on what had become a two monthly trip, to see either the lovely Dr Stevens or the amazing Dr Wheatley. Four years ago we had sat in this clinic being told by Dr Wheatley that the breast cancer was now actually secondary and presenting in my bones, following the bone scan. Totally shocked we headed home to tell the family that the chemo and double mastectomy was no longer an option and I was now on palliative care.
I think it was when I was having pain in my sternum, or maybe it was the cellulitis, that I was sent to St Julia’s. We were advised to take an overnight bag but when Nick parked in the car park we sat, both of us, nervous of what was to happen. I suggested we left the bag in the car as I wasn’t going to stay over!
We walked in and were greeted warmly by the lady at the front desk who guided us through the signing in and then went to fetch a nurse. We were taken to room 2 (quite near the exit to my relief). I can’t remember, sadly who it was but I do remember that all the people we were to meet were just so kind and I, in hindsight, well gosh I was difficult!
“Do you want to sit on the bed, you might be more comfortable?”
“Oooh, no thank you, I don’t want to scrunch the bed up so that it needs to be changed, because I’m not staying!”
“Would you like any help unpacking?”
“Oh it’s ok, I’m not staying, I’ve left my bag in the car.”
“Would you like a cup of tea? I think I did say yes please.
“Would you like a reclining chair?”
“Oh, no thank you I’m not staying.”
Then we met someone who kindly offered as an amazing variety of foods for lunch.
“Oh no, it’s very kind but we are not staying.”
I had my observations taken and I bet my BP was up! Everyone was so very kind, patient and caring.
We met a Doctor and she talked us through my symptoms and what was going to happen and before I knew it, I had agreed to stay, now seeing that this was going to be the right thing to do. Nick fetched my bag and I unpacked. “Argh!”
We met the team of amazing staff. Do you know, every single person made me feel so very special and safe and cared for, I felt so scared and everyone was doing their utmost to settle us in.
We ate lunch together and it was so very special and like a hotel meal, we were almost forgetting where we were – just for a moment.
We sat together and I think I felt so relieved that we were being ‘cared’ for. I remember my Mum being so upset up in London, having the same scary feelings when the words ‘admitted to the hospice’ were uttered. People always say “ah, they are lovely places!” “But try being admitted” Mum would say.
But actually I feel SAFE when I’m there, even now when I pop in for acupuncture or to shop or to check in with Sally or the Doctors.
So that was my first introduction. I remember when Charlotte and Benjamin visited. I think they were scared of what was happening to me and what they would see and even whether I would come out! But my goodness, I saw them being welcomed in to an almost extended family and when they left that evening, not because a bell rang or time was up, it was because I was ready. They left and it was teary and I was upset, but I was supported by another smiley face or a hug. I had a ‘nice cup of tea’ and a chat and that carried on throughout my stay.
I think I was a pain at trying to escape and go home, but actually I now feel at my safest when I am there.
My time with the Doctors was never hurried or interrupted, they knew every pill I took and were able to put me on to the best regime.
I went to Paradise Park for free with my friend. We were given a wheelchair and she heaved me up the hill, bless her, and the nurse had phoned ahead and we went to feed the penguins.
I’ve had a couple of stays, for various reasons, mostly to rejig my medication to allow me to continue to run an independent lifestyle. But each time (my favourite room is still number 2), we have all been made so welcome. I’ve had a birthday there and not once did the lovely cleaning lady complain about the cards, presents and muddle.
We have had help and care from all manner of people and even when sleep has been elusive, someone has been there to sit with me and chat.
I remember Cathy moisturising my swollen legs following a couple of clots. They felt fit to burst and not a pretty sight, but massage them she did and then we laughed as she pushed and pulled me to get me back in those jolly old stockings. I’ve soaked her on many occasions in the shower when I’ve been rigged up with various syringe drivers. It’s not easy to keep your privacy while attached to so many wires whilst in the shower, but we did with lots of giggles!!
I feel I take up too much time but everyone is so very kind and not once have they made me feel that way.
Now for another amazing lady we have met. Michelle Earle. I started having acupuncture at the hospice to deal with ‘hot flushes’ / down pours! They then kindly carried on with out-patient appointments, coming to our home. Sitting in my recliner, pinned in numerous places and dealing with hot flushes, sickness and pain relief, I was sceptical at first, but it works and I get the opportunity to talk through any worries or concerns. I have had many panics that Michelle has acted on and sorted for us.
Professor Drew said when I was first diagnosed with a lump in my right breast, it is a journey you are now on and you are the bus driver and in charge of where it goes. It hasn’t been like that as our journey went wrong from the start. And I would say that to have the hospice behind us has been our path/driving force.
We have had many a curve ball when Dr Stevens, Dr Bridget and Dr Gibbons have been there to direct us. When I was in Treliske and felt unheard, the hospice were there for Nick when he rang saying “help!” A couple of Christmases ago I was being/feeling so sick that the slightest smell would trigger it. Friends were lovely, bringing gifts of non-smelly flowers and Christmas Day was approaching. Dr Stevens sat in our living room discussing how to get round the turkey smell and how the only solution seemed to be to barbecue it! However, in the end because I wanted Christmas to happen, we had a small bird and had the heating on, but all the windows and doors wide open. We managed to eat a full Christmas dinner and I managed a full five minutes at the table for crackers and a photo! I still think barbecuing was the way to go! But after the medicine juggling and a spot of radiotherapy to my skull, we were through another glitch.
Well four years on I’m still going, having gone on from that first Christmas. I think I now try to make the most of my days and times with my family and with constant backup from the hospice.
December 2014 and I thought I had received the worst news possible! Dream on! We had the results of a CT scan and things had changed. I have a new tumour, which has blocked my kidney function. So I had a nephrostomy to relieve the pressure, more radiotherapy and new meds. All seemed to be going ok and with Dr Stevens sorting our heads out, I headed in for an internalised stent.
The op seemed to go well but I managed to collect an infection and was really quite poorly. To my relief Treliske agreed to me being moved to St Julia’s. They nursed me back to ‘me’ again. It was a bit of a ride and full on scary again, but with the kindness and patience and understanding we are home again and living as a fairly normal family.
I think it must take a special kind of person to work at the hospice. Mum keeps checking Michelle’s back for wing growth. She has felt reassured and felt a part of my care too and she feels the staff are angels in disguise.
I’d love to name everyone at the hospice, and friends too, who have helped me or the family. They have supplied care and kindness during treatment, told jokes to make me smile (Elaine!), brought ice lollies in (volunteer friend of mine) and dealt with dressing my weird toes (Nurse Sara). There are just too many people to mention by name but each one has helped us live with cancer and without them I’m sure we would be in a far worse position.
I just want to thank everyone that works for, or supports, the hospices. We feel that medicine and the power of prayer have been contributing factors. But the care from St Julia’s is the thing that has made me survive and still be here four and a half years on. I am very blessed to have been fortunate to have St Julia’s in our lives. Thank you.