Thursday, 7 November 2013
to get a blog out before the UK wakes up or anything. Or to remember to thank everyone and remember everyone.
Firstly, thank you for the cards. I really can't write even my signature just now so you will have to accept that I acknowledge, love and appreciate but can't respond.
Secondly, a big shout out to all the less glamourous but probably more essential, NHS staff, who have been shepherding me these last few days.
The medical photographer - LOL - can't wait to see the "after" photo. No photoshopping!
The nurses in both hospitals - your kindness and calmness in the face of fluster, bluster and uncooperative doctors and consultants continues to floor me. Jane, the grown up nurse I met yesterday, is now a friend. Your compassion - historic - and your smile made my day.
The receptionists who ask the same question, smile, tick and reassure, point in the right direction, take instructions over the phone, remember and deserve a cup of tea every half an hour with a large slice of cake. Jules, the lynchpin at the MacMillan Day Centre in Bury, gets my top award. I have given up disseminating information or Fuck You Cancer t-shirts to anyone but her. However, I cannot fault any at either CTC or St Andrews yesterday.
The secretaries (Diane!) who juggle not only their consultants but the teams as well, taking quick fire instructions, fielding off patients, producing hospital numbers out of thin air, making me smile, communicating with each other and understanding long words…
And for those support staff who go out on a limb for patients and their union for their magnificent support all over the media yesterday. I hope that they get the recompense and recognition they deserve.
Whilst on the way down the A12 yesterday, I was listening to Jeremy Vine (1 hour 5 mins in) on Radio 2 and a very sad interview with a young lady who had lost her Dad to cancer this summer. Whilst every nerve in my body sang in sympathy with her for her loss, I was deeply worried about the amount of bad and damaging information that was being allowed to be disseminated out there about cancer treatment. Live radio is dangerous and having someone who is deeply emotionally distressed talking about cancer treatment protocols from a position of "amateur" could lead to all sorts of trouble.
A12 - yuk!
Delaying chemotherapy treatment by one or two days because of the Royal Wedding did not kill her dad. I'm sorry. I know that sounds harsh. But it didn't.
An urban myth like that could be very damaging and waste a lot of time and resources that should be focused on patient care may have to be diverted to "educate" that this is not true.
Sometimes people may need their chemotherapy treatment plan changed. If this happens, your cancer doctor or nurse will explain why it’s advised in your situation.
It may be because of the effects of the chemotherapy on your body or on the cancer itself. Sometimes changes can be made to suit your personal circumstances.
Chemotherapy can affect organs, such as the bone marrow, kidneys and liver. You’ll have regular blood tests to monitor this. Some drugs can affect the nerves in your feet and hands (known as peripheral neuropathy) and others drugs may affect hearing.
Depending on the problem, your doctor may delay your chemotherapy for a short while, reduce the dose or put you on a different chemotherapy drug.
The most common reason for delaying chemotherapy is the number of white blood cells in the blood being too low. This isn’t unusual so try not to get too worried about it. Once your white blood cells are back up to a healthy level, you can start your next cycle of chemotherapy.
You may be able to delay your chemotherapy if you have a special social occasion coming up. A small delay won’t usually be a problem, but this does depend on the type of cancer you have. Your cancer doctor or specialist nurse will tell you if this is advisable.
Your doctor may arrange tests or a physical examination to check the effects of chemotherapy on the cancer.
If the results show the cancer isn’t responding well enough, your doctor may change your treatment plan to different chemotherapy drugs.
Chemotherapy has to be flexible. Everyone responds differently (like I don't know!) and the more you have the weaker your body gets and the longer it takes to recover. Often, the drug regime may have to be changed if the combination is not working. The younger you are, the more aggressive the cancer is, the quicker the cancer adapts. It is a lottery.
Whilst I like Jeremy Vine and his programme, I fear that there are going to be a lot of worried patients tying up phone lines, asking if their loved ones are at risk because their chemotherapy was delayed by 2 days because of the Royal Wedding. This is not entirely helpful to an already stretched NHS.
And for all those people who have asked why I haven't had this operation before, it is because it was not necessary before - the chemo has been working, along with the aspirations. This sort of operation costs a huge amount of money, ties up a huge amount of people and is not going to save my life. I am bloody lucky to have been offered the opportunity to take this chance. It is not my right, especially as I am not going to go on and live a long and productive life. It is palliative care beyond all reasonable expectation. I will not rage that this should have been done months ago. How were we to know?