My oldest friend has recently been diagnosed with cancer. Non Hodgkin’s Lymphoma (NHL) to be precise and I wanted to share some of the positive elements she’s experienced since starting her treatment, in the hope that it might reassure any of you going through something similar.
It’s always absolutely terrifying to be confronted with a diagnosis of cancer and there is a huge amount to take in and to learn in a short space of time. Half the battle is understanding the process and what it all means, so that step by step you realise that it is entirely possible to deal with it all. Even more encouraging is that you realise you can deal with it all AND still maintain your sense of humour and joyfulness. I am completely in awe of my beautiful friend’s positivity and so proud of her that she is managing this new, strange, frightening situation so incredibly well, day by day, one step at a time. It’s certainly helpful if like her, you are able to be in the moment as much as possible, trying to stay present rather than look too far back or forward.
NHL is the 6th most common form of cancer with nearly 14K people per year in the UK being diagnosed with it.
She had been suffering from stomach and back pain for a few months that had started waking her at night. She had also been feeling bloated and her bowel habits had changed. A friend suggested she go and see her GP when she was concerned about her low energy levels and from there it quickly escalated to blood tests, MRI, CT and PET scans that ultimately highlighted a large (“bulky” they call it) tumour in her abdomen which needed almost immediate attention. With this type of cancer, surgery is not an option, so they tend to start chemotherapy as soon as possible.
I called my brother who is a Haematologist for advice on who she could speak to about her diagnosis. “I know you don’t know much about what I do, but I’m the lymphoma lead at my hospital” he told me. We didn’t even know that NHL is a form of blood cancer, so you see a haematologist rather than an oncologist. Lymphoma occurs when the white blood cells (the infection fighting cells) called lymphocytes grow out of control and form tumours in the lymphatic tissue. No one seems to know why this should happen – it’s not considered genetic and not caused by lifestyle choices either.
There are two main types of Lymphoma:-
Non Hodgkin’s Lymphoma
B-cell NHL – within Non Hodgkin’s lymphoma 80% are the B-cell subtype.
Then it gets categorised further into:-
High grade lymphoma
Low grade lymphoma
My friend has the fast growing (aggressive) high grade lymphoma – the B-cell NHL, which although it sounds worse, apparently responds better to treatment and therefore you’re more likely to go into long term remission. They generally treat it with 6 courses of intensive chemotherapy (and sometimes radiotherapy as well) administered in hospital via an intravenous drip and given every three weeks until the course is complete.
My brother (and of course her own Consultant) was quickly able to reassure her that treatment for this form of cancer has a very good success rate with many people being totally cured (75%). R-CHOP was mentioned very early – it’s the very unfortunate acronym for the combination of cancer drugs that are given.
She’s already had two rounds of chemotherapy and so far she’s been feeling absolutely fine, which is a wonderful bonus when you know the job the drugs have got to do is melt away the tumour. The first dose she was given took a lot longer as they give it to you slowly to prevent an allergic reaction – she had to sit in the hospital for 9 hours the first time. Three weeks later and she was in there for four hours, which is what each one should now take. The radiotherapy she will receive after her chemo treatment is over is normally given in short daily sessions, Monday to Friday and usually for no more than three weeks. (But we don’t know anything about that part yet). The really great news is that she had a PET scan last week to see how much the tumour has shrunk in just this short space of time and it has already significantly reduced in size, which had made her feel super human and elated.
She’s had no tiredness or nausea (apparently the anti-sickness drugs given alongside the chemo drugs these days are excellent) and she’s been able to carry on working. She has to remember to drink lots of water every day to help her kidneys flush out all the toxins and she seems to have a very healthy appetite (given she made me stop at a service station on the way to Brighton to buy Mini Rolls for the journey). My brother is delighted she’s been feeling so well – I had assumed that incrementally you would feel worse as the treatment carried on, but he’s reassured her that she’s likely to feel the same throughout.
So whilst she’s had constipation for the first week after treatment and numb tips of her fingers (both of which need to be addressed before the next bout of treatment), the main “side effect” (if you can call it that) is the loss of hair which is a big deal for anyone and the one thing she didn’t want to lose her hair. However, when she made enquiries about using the cold cap or other options, she was told in no uncertain terms that there is simply no way of keeping it. The chemotherapy is strong and the hair will fall out. Once she knew that was going to be the case, she got on with processing the information and working out how to deal with it and accept it. She has always had a splendid mop of blonde curls and it’s pretty difficult to work out how you’re going to manage that total change in image without being devastated. It’s all a process and a reset. Men have to do it all the time. It’s of course worse for women because our hair rarely falls out naturally, so it’s a harder scenario to deal with. But the good news is that once treatment is over it will grow back again and according to Gary Price, it often is similar to the hair you had as a child.
We did the initial exploratory wig shop together, criss crossing London to try on a number of different wigs and get advice on what would be best for her – real hair Vs a mixture etc. The wig she liked the most was in Selfridges and was the most expensive one we’d found because it’s made of real hair and very similar to the style of her own hair, which for her was important. Some people choose to change looks, or go for a number of different styles and colours, but she just wanted one good wig that people would think was her own hair. As she’d been advised to give up alcohol during her treatment, we agreed that the money she would save on bottles of wine could go happily towards her wig fund.
Selfridges bespoke wig service is excellent. Run by Daniel Galvin’s expert, Gary Price, who has over 30 years of experience creating looks for celebrity clients within the fashion and media world. He’d helped her choose a wig and then she decided to go back to him to have her hair cut off when it started falling out a few weeks later. Gary’s recommendation is to get it cut short before it starts falling out in clumps, but not to shave it off as that can lead to a very sensitive scalp and can also feel very dramatic. It also helps avoid any infections. It seemed very clear to me that an infinitely better solution was to go and have a positive experience with a sensitive hairdresser (if it’s affordable) rather than get a family member to shave your head in your sitting room.
So, when she was finally ready to get it cut off (because by now it was falling out in handfuls), we made a day of it. She’d been desperately upset the night before when she washed her hair as gently as possible in the shower but it still looked like a small animal was trying to get down the plughole as so most definitely needed cheering up. We met early to go and have breakfast at the wonderful Chiltern Firehouse:-
Then I’d booked for her to have a complimentary “healthy glow” makeup session with Laura Mercier. She rarely wears makeup, but it seemed to me that a bit of makeup would make her feel better once the wig was on:-
Then we went to see Gary Price who guided her into the private room at the back of the salon. He contributed hugely to the positive experience she had with his innate ability to put her at ease. By combining his expertise with his background as an integrative psychotherapist, he was warm and sensitive to the situation and has a very Zen-like calming influence. He discussed how short she wanted to go in the first instance and was very gentle with her. I noticed that he was quick to sweep away her beautiful locks of hair before she saw them on the floor. He works with cancer patients, hair loss caused by Alopecia and also burns victims where hair pieces have to be very skilfully added and I’m sure he’s had to deal with a huge amount of emotion. Very sadly, currently he is only able to work part time because of the shortage of wigs – most blonde wigs come from Russia, where for obvious reasons we have a supply chain issue. Another unexpected disaster caused by the war.
He spent over an hour cutting her hair into a very chic pixie style – recommending that she keep it long at the front for the time being and she was very happy with it. She looked cute and felt great – which was the main thing. The extraordinary thing is that after all of his time and focus, he refused to take any money for the cut. Admittedly it wasn’t going to last very long, but it’s still his time.
Then he helped her put the wig back on correctly and trimmed the front of it a bit:-
She was so delighted with the whole process that we went and had a glass of champagne afterwards in the Sky bar and we will remember that day forever:-
Since then, we’ve done a number of things together, which has been very special. I wasn’t meant to be in the country in August – had been due to go and have a holiday in France with my boyfriend, but there was a big drama a few days before we were due to go and I had no choice but to cancel the holiday. So on the plus side of my heartache I’ve been able to spend loads of time with her which has been a joy. We’ve spent lots of time just hanging out together, been on a mini break to Brighton to stay with a friend and even attempted a game of tennis (which was disastrous because we’re both such terrible players).
Having fun in beautiful Brighton:-
she wore her wig in the evening when we went out for dinner, but during the day she has an array of bucket hats that are less hot an option.
So I hope some of the above has helped clarify any questions or concerns. The one thing I’ve taken from all of this is that you really have to live in the moment and enjoy life to the full as much as you can.