Lots of medical stuff has been happening over the last few days, so it's probably time I wrote an update.
On Friday, we had our first appointment at Royal Marsden in Sutton. Immediately we walked into the hospital, we felt a sense of confidence and calm. Perhaps it's because it's a hospital which specialises in cancer cases and so you know that everyone there is going through a similar kind of experience and the staff won't be surprised or flummoxed by what you look like or what your symptoms are. We met a range of people (we had to write all the names down and get business cards, otherwise we would just forget immediately - it was like being at a party and being introduced to lots of people and knowing you've got no chance of remembering the names!). We met the Staff Nurse for the Unit, my key worker, the Registrar, the consultant, a nurse co-ordinating the clinical trial I have asked to be considered for and I think that's it!!
By one of those weird coincidences, a friend I used to work with years ago, but with whom I had lost touch, had sent me a card earlier in the week (the grapevine had worked and news had reached her that I am poorly) and in it she mentioned that she was having treatment for cancer. I texted her on Friday morning to ask for her email address and she replied, saying she was on her way to the Marsden for her radiotherapy - it felt a bit X Files to text back "Guess who has just pulled into the Marsden car park??"....she had left the hospital before we finished with the consultant, but she called round for lunch later. I opened the door to her, looked at her wonderfully bald head and she looked at my wonky face and magnificent scar ....and we both burst out laughing :-D
So, back to the consultant and all the medics on Friday - basically, they confirmed that I won't be having chemo (for which I am hugely grateful - it would have felt like a treatment too far) and talked about the radiotherapy: starting on 18th July, Monday to Friday for six weeks, with a list of potential side-effects. These include extreme tiredness, mouth ulcers, loss of saliva, red, burned skin, tooth decay, loss of taste, loss of hearing, loss of balance, secondary cancer. Apart from that, it will be a walk in the park.
So far this week, I have the following appointments:
Monday - blood pressure check at GP. Blood pressure is up, surprise surprise;
Tuesday - dental check-up at the Fulham branch of the Marsden;
Wednesday - hearing and balance assessment at Charing Cross Hospital (which is nowhere near Charing Cross!);
Thursday - blood test at GP;
Friday - consultant meeting at Sutton branch of the Marsden and then having my mask mould made.
This means two days of travelling on public transport, which I am going to do on my own. If I want to return to work in London at some point, I will have to get used to it so I might as well do it this week while I am feeling relatively strong.
There was a bit of a setback this evening, when I got a phone call from the Registrar saying that they want to check whether during the operation in May my surgeon checked that my larynx and surrounding area were clear. It might be obvious from the operation notes, which they have still to review. However, she flagged up with me that they might need to do some procedure to check my larynx and this might involve being knocked out again. Not good news, although I think it will be a camera down the throat job rather than an incision, so it shouldn't prevent my radiotherapy beginning on the planned date. Obviously, I would far rather have more degree of certainty than we have at the moment (although the registrar confirmed that the PET CT scan was clear apart from the area where we know I have cancer), but I do understand why they want to make absolutely sure. It just feels as if, yet again, we are still having to be prepared for finding out that I have cancer somewhere else. I feel okay, apart from being a bit tired and having sore skin around my scar, so I am hoping that the fact I don't have difficulty swallowing and don't have a cough means that the larynx is okay, but it really is a case of who knows?
This notwithstanding, both Neil and I feel in such safe hands with the Marsden. They are doing their best to co-ordinate everything so that I have as few journeys to various hospitals as possible and have been excellent at keeping in touch with me to let me know what is going on and when my appointments are.
In other news, Neil and I went to our local Carnival and saw lots of friends, which was a good, sociable way to spend a few hours. On Sunday we went to church (Neil came with me to support me in case I found it too overwhelming) - I especially wanted to go along because my good friend Sally's mum was tranferring her membership to our church from her former church, as she has recently moved to our town and I wanted to support her. After I had my diagnosis but before my surgery, when I went to church I found it terribly difficult - the music seemed to bring my emotions to the surface and I had to leave the service several times in tears. However, yesterday was fine, even when my name was mentioned in intercessionary prayers, so I hope this means that I will be okay from now on. It was lovely to talk to people afterwards as well - everyone was so pleased to see us and to know that I am getting back into circulation.
We had lunch at Sally's home, with her mum there too, and watched the tennis. I was sad to see Rafa lose but Djokovic was a worthy winner - he outplayed Nadal quite convincingly. Then, after a short rest, over to other friends for Pimms and nibbles in their garden in the evening. Once more, we are so blessed with the kindness we receive from our friends both near and far.
Now, Little Ninja (otherwise known as "N") asked a question on my previous blog post about what you could do to make me feel okay about things. The answer is - exactly what you are doing! I know that dealing with disfigurement is something that has to come from me and no one else. The best thing you can do is just treat me as normal when you see me. Neil tells me I look lovely and reassures me all the time and I know from what others have said that after about five minutes, people do just get used to what I look like. I know that I am the one who needs to get used to it!! What I really need from my friends and people who read my blog is honesty, a kick up the backside when I need it, a (virtual) hug and a tissue when things are getting to me and plenty of nonsensical, jokey, fun comments. If you can do all that - you get the gig!! Form an orderly queue for auditions, please.
Till the next time, I leave you with a joke which I shared with Celia and David last night....why are pirates called pirates?
Because they arrrrrrrrrrrrrrre (with thanks to Rosanne "Rock Chick" Fleming for that one!)