Its strange that the New Year comes and goes and then life gets back to its routine again, already we are well into the second month. I actually started this blog update weeks ago and it was going nowhere and I thought it was sounding like a diary and I was not putting down in this where our minds and lives were going and so I closed the laptop until I knew this would be a blog that I want it to be. We started this blog two years ago when Simon was in Basingstoke for surgery, we wanted it to be an account of the major surgery and treatment he was having in the hope it may help someone else. We were at that time looking for a curative treatment, this has now altered and the blog hs followed the twists and turns with us. I am now signed off work until my retirement date, did I actually say retirement date, that sounds so weird. Being home together is something we both love, yes there are times when we have our own space, but mostly our days are together.
I am able to sit with Simon for the length of his chemo, I would normally be at work and would see him on and off throughout the day, its a time where you sit, watch and the realities of the world you are in fall around you and can overwhelm you.
Lyd in the chemo unit at the hospital, it has three bays, each with 6 recliner chairs in and a couple of cubicle rooms for individual treatment. Simon always likes a window seat, which is a majority of the time available. The Lyd Team, I actually do not know where to start with this team, they are all amazing, we have been under the care of this team for some time and so know every single one of them well, but their care, attention to detail and amazing attitude to all their patients and each other makes such a difference. They have made such a difference to us, they do not only offer treatment but care, conversation and hugs when required. We have got to know them and they have got to know us, we are there twice a week and so it’s something that is going to happen. The team on Lyd make a difference to this whole experience for us, from the reception team, nursing team and Debbie the volunteer who comes around with the drinks trolly, we cannot thank them enough.
When we go for Simons chemo we have a bag of things that we need to take:
- Blanket, Simon sleeps for a lot of his day and so like to rest his head on a blanket
- Earphones, sometimes you just want to shut the world out for a while and listen to music or something downloaded.
- iPhone stand
- Numerous chargers for phones etc
- Snacks, 7-8 hours of chemo and you need a distraction of food, so a selection of snacks and sweets come with us.
- Drinks, bottled water and lucozade sport
- Jaffa cakes
- Change for car park
- Spare stoma bag (you never know when you will need one)
- Something to read
Every patient is different with who and what they bring with them, some come with no-one and nothing, we prepare for every eventuality, and those that no Simon will know this is something he does for everything. Whilst you are sat there you see so many people whose lives have been altered, changed and shortened in some cases by the dreadful disease. One of the things we do not do is engage in a lot of conversation with others, and it seems everyone really does the same, we are in our own bubble, patients and carers/partners sat supporting, sometimes chatting or in silence. Simon sleeps for a lot of his, he has a reaction to the IV Piriton that sends him to sleep and so he sleeps for hours. It is this time that I sit, crotchet, listen to music etc, but somehow this time and this experience is a personal almost intimate time, there is something about watching him in a complete restful sleep.
The lack of conversation with other patients during this time is something that we prefer, if you get a group of patients that chat there will be questions raised about your illness or diagnosis that no one wants to really discuss (there are a few exceptions) However, Simon was having his picc line flushed and dressing changed a few weeks ago and got caught in such a conversation, he was asked about his diagnosis, how long had he got (!!!) and had he made his funeral plans, as he hadn’t he was told he should do them before he is on his last few days and its too late………. This resulted in one thing, I was waiting in the car and Simon emerged from the hospital distraught, anxious, fearful and every negative emotion. This conversation shook him. I am sure these patients would not want to have upset anyone, they talked openly about there mortality and time they had left without regard that others wouldn’t want to be in on those conversations. Its not that we don’t talk about such things as we do. We know Simons life is going to be cut short by this disease, we have discussed this but this is done is short conversations when we are emotionally able. We know at some point soon we will have to ensure all Simons wishes are set out but this will be done in our own time. It was such a destructive conversation for him.
Simon and I are both avid Social Media users, however one platform I use as support is Twitter, Simon doesn’t follow me on Twitter as he knows that I am in contact with cancer patients or family of those patients. I have sought comfort in knowing these people from across the country and a few abroad, asking advice, following their treatment and generally having contact with them. However in recent weeks this group of people has reduced in number as they have passed away, I have used several of these people as waypoints through this and finding this number reducing has been hard to handle. We both have known people with cancer, not only the last four years and we have both lost close family members, however, now when we here of people loosing their battle against cancer we both feel a stab of pain, loss and the fear creeps back into our heads again. I am thankful that I have had contact with some truly inspirational people and their support though virtual is missed greatly.
So onwards and upwards, life and our little adventures carry on.