7 February 2010 – Mentally Preparing for Treatment (Cancer and Me 9)
During that period between initial diagnosis and the start of treatment there was a whole load of information to take on board at the same time as dealing with whatever new tests cropped up each day.
The hospital was very well geared up for support on this front, in my view. Within 24 hours of being told by the surgical doctor, Heidi and I had had an initial meeting with one of the Haematology consultants, and very soon after that met with the Haematology Nurse Specialist.
I think it’s great having Nurse Specialists around. They are closer to you as a patient, and more approachable and easier to get hold of than the consultants. And they don’t just tell you about medical stuff. They really sympathise, and try to point you to where help is available in every area you might be affected – they are linked up with the Macmillan staff and local cancer support groups, and they seem to know what charitable aid may be available, where specialist counselling can be found and all sorts of things like that.
I was given a fairly sizeable information pack, including print outs from the two best cancer websites: macmillan.org.uk and Cancer Help UK on the Cancer Research UK site. So I had to read about what lymphoma is, and what treatment would entail. I was given details of the chemotherapy course that had been prescribed, and what all the different drugs did, and what side effects to expect.
It was a lot to take in. Heidi was quite overwhelmed by it all. Of course, she had been proved right, even though she’d had no grounds to think I had cancer in the first place. That seems to have two effects. On the positive side, the pessimist is never shocked when bad things happen. On the negative side, it is an affirmation of negative behaviour – she can now justify her worry and thinking the worst, and she can utterly convince herself that she will be right every time.
It was also fortunate for us that Heidi’s sister and her husband are both medical. Beth is a nurse, and David is a GP, and they live locally. I’ve already referred to Beth coming to visit. She did so whenever she could, and sent me ‘encouraging’ text messages almost every day (which normally consisted of some sort of joke or funny story). She was brilliant, and made the stay in hospital so much easier to cope with.
Heidi would ask Beth and David anything throughout the whole time, and they were amazingly helpful and wonderfully patient with her as she worried and turned things over and over in her head.
I can remember Beth telling me after she’d spoken to David about the diagnosis that he said that if you are going to have cancer then this is the sort you’d prefer. It is one of the most treatable and has one of the highest cure rates. That was helpful to know. But these things still play on your mind.
It really is strange how you want to know what your statistical chances of survival are. But there really is no way of telling. They try to get an idea of the seriousness of your disease by working out what stage you are at. So I was diagnosed as stage 4b – that’s the highest. However, I was only ‘b’ because I had lost a lot of weight (doesn’t take a mastermind to work out why I’d lost weight, but in my mind it had more to do with the rather unusual location of my primary lymphedema, and less to do with the progression of the disease). And I was stage 4 rather than 3, because the MRI scan had highlighted shadows or lesions on my liver, which because of the lymphoma elsewhere they assumed was also due to enlarged lymph nodes (although they admitted they couldn’t tell). Later on this proved to be incorrect. So one consultant would only talk about cure rates in relation to the diagnosed stage – so he gave me 50% for a total cure (being defined as 10 years remission). The others clearly thought, without contradicting their colleague, that this approach was unwise, and they would only say that they expected me to do very well with the treatment and they were going for a complete cure.
There are so many things that you just don’t know about cancer until you have it, or you are close to someone who has it. I had never heard of non-Hodgkin’s lymphoma, let alone knowing about diffuse large B-cells etc etc. I’d never realized there were so many different types of cancer, and so many different types of treatment.
Chemotherapy is also a bit of mystery. Just the word makes it sound mysterious, like you have to undergo some special procedure in a special place. But it’s really not that mysterious. It’s not that pleasant either – that much I had gathered – but I’ll talk about that later! All it is is the administration of a certain type of drug – a poisonous type, which kills cells in your body – and not just cancer cells, healthy cells too. And there are a whole host of different combinations that these drugs are used in, leading to lots of different types of chemotherapy courses. Some are stronger than others, and so the stronger ones have harder side effects. They are normally denoted by acronyms that signify the drugs that are included.
The regimen that I was prescribed in 2010 was called R-CHOP. I remember that the R stands for Rituximab, because it’s not strictly a chemotherapy drug. It’s called a ‘monoclonal antibody’. I guess it’s not called a chemotherapy drug because it is not so harmful to healthy cells. It is a clever drug that targets the cells that are malfunctioning and stops them from multiplying. When I was first treated it had only been licenced for use for about 5 years or so, so was still fairly new to the scene. However, it is spoken of as being pretty revolutionary for lymphoma treatment. And I feel genuinely fortunate to have been given it.
The other thing that we had to mentally prepare for was me being out of work again. The contract I had started in December was supposed to be for 12 months maternity cover. And I had already made such a positive impact that they were prepared to hang on for my recovery, even a month after I left them on Christmas Eve, which I found amazing. But since I now didn’t know how the treatment was going to affect me, and I couldn’t really see myself commuting between Basingstoke and Watford while going through chemotherapy, I had to tell them to go and find someone else.
And that’s why gathering all the information possible on financial aid was rather urgent. I had a few ideas of my own and the Nurse Specialist put us in touch with some helpful people at Macmillan and the Wessex Cancer Trust.