Magteld Darroch-Jansen (1976-2014)

A final contribution to Magteld’s blog, Written in haste and far too soon, but I hope worthy of an unforgettable woman. Gordon.

Gordon Darroch's Unreal Domain

My beautiful, dearly beloved wife passed away on Monday, less than two years after being diagnosed with breast cancer and eight weeks after our family moved to her native Netherlands. This is an edited version of the eulogy I delivered at her cremation yesterday, May 31, in The Hague, with an English translation below.

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Moving to The Hague from a Hospice to my new home

Magteld Darroch-Jansen (1976-2014)

Six weeks ago I was in hospital receiving emergency radiotherapy to my spine and neck to control the cancer cells and give me the mobility in my arms back. After that was finished I went home in an ambulance in a wheelchair. I spent a few days at home before flying to the Netherlands with my mother while I was fit enough to travel. I was taken into the Jacobshospice in The Hague, a wonderful place that became like a home to me. It was very emotional to leave Glasgow. We lived there for 14 years and our children were born there.

When I arrived at the hospice my sister was already there and the volunteers were very welcoming. My room was lovely: it had a beautiful view over a tree-lined canal and in typical Dutch style there are lots of bikes parked there. You could hear the trams go by regularly which is quite soothing. I got to meet a lot of people while I was there and they have all been great and couldn’t be more helpful.

After a trial weekend at home to see how we as a family got on with my daily needs I was discharged from the Hospice and live at home in our new house. I get help with personal care in the morning so my husband can get on with the school run. I had a pet/ct scan and there was some good news and some bad news. My left lung has got lesions as well as a couple of tumours, whereas my right lung still got lesions, but not as much as before. There was no change to my liver, which still had the same spots. The biggest problem was my left hip. It was sore and it turned out there were some cancer cells that put it at risk of breaking. I am now receiving 10 sessions of radiotherapy for this and I have had six already so far. I can already feel the benefit and my left hip feels a lot stronger. I’m starting chemotherapy next week. It will be a regime of 6 sessions of paxitacol and carboplatin. I will be losing my hair again and I could be ill for a few days and need rest.

It’s my eldest son’s 11th birthday this weekend and we are celebrating this with our family. He’s really looking forward to it and so are we.

 

A few days after writing this blog post, on Monday May 26, Magteld Darroch-Jansen sadly passed away in hospital. Many people got to know her in the last phase of her life through her struggle with cancer: I was privileged to know her for 21 years and saw how she approached everything in life with the same enthusiasm, determination and unquenchable spirit. Her two children, her wider family and many friends around the world will miss her terribly. Gordon Darroch.

Me feeling happy.

Me feeling happy.

 

Koningsdag / King’s Day

Vederzwaar

Aan de kroningsdag van vorig jaar heb ik geen goede herinneringen : ik lag in bed met een soort Afinitorgriep en voelde me te ziek om tv te kijken.

Nee, dan was het dit jaar veel beter. Taxol voelt lichter dan Afinitor.

Met Axel zijn we naar de vrijmarkt geweest. Naast de gebruikelijke rommel lag daar een prachtig spelletje Miniloco voor een euro. Axel speelt dit op school ook graag. Er zitten twee boekjes bij en hij heeft vanmiddag al een paar spelletjes gedaan.

~

I have no fond memories of last year’s Crowning Day. I was in bed with a kind of Afinitor-induced flu and felt too ill to watch tv.

No, this year was much better. Taxol feels lighter than Afinitor.

We took Axel along to the free market. Apart from the usual garbage, we found a beautiful Miniloco game for a euro. Axel likes to play…

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A big setback

So the cancer has progressed, despite me being on Xeloda chemotherapy treatment. Last Tuesday I was taken into A&E because I was experiencing bad shoulder pain and lost my mobility in both arms. They were concerned about a compression of my spine. I had to stay the night so I could have an MRI scan as soon as possible, as they needed to find out what was causing the compression on my spine. I had to stay in bed and move as little as possible. Finally after two days they got an ambulance to take me to another hospital to get the MRI scan. It was a very anxious time.

 

It turned out the cancer has spread to my neck and my spine and there are further spots in my liver. I was taken into the Beatson cancer centre for immediate radiotherapy to try to control the spread and make sure I didn’t lose any more mobility. I was to have four rounds of radiotherapy to my spine. I was so glad when it was over as it was very sore to lie still in the same position, even for a few minutes.

 

My father drove behind the ambulance, which under the circumstances was very hard, especially as he didn’t know the area very well. It’s been a huge shock and brought new anxieties for the rest of my family. I have physiotherapy at the moment to help me get back on my feet and I’m getting a wheelchair. As I still have a good grip in my fingers the occupational therapist gave me special cutlery and a grabber to pick up things.

 

I am flying off to Holland soon to make sure I’m still fit enough to travel. I’ll have to miss my husband for a few weeks while he packs the house. The boys have coped amazingly well and I loved seeing them for Mother’s Day, when they brought me cards and flowers. I missed everyone so much, but I’ve been getting very good care in hospital. The staff in the Victoria infirmary and the Beatson are wonderful. Even though they were very busy and often understaffed, they treated me with the greatest respect and dignity.

 

The Friends of the Beatson came around to do my hair and some reflexology. Little things like that make a huge difference. Only time will tell, but I keep on living and enjoying what life I have left. I’m not fighting cancer as it’s impossible to fight against your own body. I’m living and enjoying every second of it.

 

So I’m not losing a battle, but making the most of it. Today, Friday, I came back home and had a lovely home cooked lunch and raised a glass of prosecco to life.

 

The difficulty of trusting my own body

I have always been a healthy person. I looked after myself by eating healthily and exercising. I ran two or three times a week and loved it. It helped me mentally as well as physically. I felt strong; even when the weather wasn’t very good I felt fulfilled after my run. Pollok Park and Queens Park in Glasgow were my favorite places to go running. Queens gave me bit of a challenge as it’s quite hilly. I enjoyed running the 5k in Pollok Park on Saturday mornings.

 

As for healthy eating, I love cooking and trying new foods. I always look up new recipes that are healthy and taste good. I encouraged my children to try new foods, which is difficult as their autism means they are reluctant to try anything new. I’m always pleased when they manage to try something new, even if it’s just a mouthful. I love presenting something new I tried to my husband and family and enjoy it together, especially with a glass of wine.

 

I did anything to help keep my body healthy and yet I got cancer. After I finished my treatment for primary breast cancer I started swimming and walked a lot and was hoping to be ready to go running again this spring. Instead I was diagnosed with secondary cancer in the lungs and for a while it was hard to walk even a short distance without getting out of breath. When I went to see my sister in The Hague I needed a wheelchair to get around the airport.

 

My first visit to the oncologist after the CT scan was frightening as I knew it wasn’t going to be good news. Secondary breast cancer is hard to treat and she was unsure whether treatment would work. It was very hard to accept that even after everything I did to stay healthy, the cancer still came back.

 

It feels unfair and I grieve about not being able to do the things I did before. I still think of the time I was running and feel sad I won’t be able to do that anymore. The Xeloda therapy seems to be working, though it’s early days. I don’t cough as much and I can walk a lot further than I did before treatment. I still eat well and enjoy cooking. I have to regain trust in my body even though I have cancer that can’t be cured. I continue looking after my health by eating healthily as before and taking the occasional walk when I feel fit enough. It will be lovely once we move to The Hague to take walks in the dunes. It will be my way of relaxing. That’s the only way I can give my body a helping hand, and any time I feel a bit better I can trust it just a little bit for the time being.

How I told my children: Mummy is not going to get better

When I was 10 years old I remember feeling frightened that something was going to happen to one of my parents. At that age I became aware of death for the first time when my great grandmother died. Although she was 83, death was something I feared as it was the first time I became aware of it.

 

Now my eldest son is 10 and my youngest 8. It was hard enough to tell them when I had a primary tumour, but at that time I had a good chance of recovering. I talked to them about the treatments and the effects it would have, like losing my hair and losing my right breast. It was hard for them in the beginning, but they got used to having a mum with no hair and they were fascinated by my prosthetic breast. Once the treatments came to an end I got better.

 

This time I had to break the news to them that the cancer had come back, and this time I wasn’t going to get better. It’s hard to break such news to any child, but with the boys’ autism it was challenging. The question was, how much do they understand? Children don’t really look very far into the future. It’s not clear either how long I have left to live as even the best trained oncologist can’t give a clear prognosis. When my youngest told me that I’m here now, I took it he understood some of what we told him. My eldest son looked confused, but a couple of days later he came up to me and held onto me and buried his face in my shoulder. He was very upset and wouldn’t let go. He couldn’t tell me what was bothering him, but I understood then that he got the message.

 

It’s surprising how they adjust to such a difficult situation. They realise that I can’t do as much as before. They do more things for themselves and I’m so pleased to see them becoming so independent. They dress themselves in the morning without a fuss and even helped themselves to breakfast when their dad was away for a few days. They find it hard that I can’t walk so fast, but they are good at waiting until I catch up with them. They know that Mum can’t walk so fast because her lungs don’t work so well.

 

Although the future must seem frightening for them, I can see how well they are coping despite everything. I know they will be fine and I’m very proud of them.

Coming to terms with a terminal cancer diagnosis

It’s been over a month ago when I had the devastating news of my cancer coming  back. A lot has happened since. I have started on chemotherapy tablets called Xeloda. A routine I have had to get used to.

 

I never thought I could cope with living with a terminal diagnosis, but life goes on and things don’t stop while you confronting. My children still need to go to school, the wash keeps piling up. Most importantly we are continuing with our plans to move to The Hague. Last month I flew out on my own to see my sister who helped me with house hunting. I saw the rest of my family too and it was good to see them, especially my youngest sister as she is due a baby soon.

 

I still make future plans, but I live by the day too. I have no idea how long I have left and I want to make sure my husband and boys will be fine. I saved for a pension and now I know I won’t make it to retirement age. I have made sure it will go to my husband and children. Of course I had to think of myself too, so I went on a shopping spree. I also want to have a lovely holiday with my family.

 

I may not have a long life, but I have a good life.

The cancer has returned

After I finished treatment in May last year I gradually picked up my life again. In June we saw my family in the Netherlands and it was good to see them after all we have been through. We had a wonderful holiday in Denmark and Legoland. Staying in the Lego hotel was the highlight for my boys. We decided to put our house on the market and move to the Netherlands. It was a big step after living in Scotland for so long. I still needed support from the Maggie’s centre to help me move on from my primary diagnosis. The fear of the cancer coming back was ever present.

 

Then my worst fear came true. I had a persistent cough from before Christmas. I didn’t think of the worst at the time as everybody was coughing. When January came and the cough was still there my husband insisted I went to see my GP. At that point I started coughing up blood. My GP sent me to the hospital for a chest X-ray, bearing in mind my previous diagnosis.

 

In the same week that we had the great news that we have sold the house, I got a phone call from my GP to inform me that lesions had been found in my lungs. She made an appointment with the breast surgeon and my husband and I saw her two days later. She confirmed what we were dreading to hear. The one thing I was most scared of happened. The cancer had spread to my lungs. It felt like we had woken up in a nightmare, but it was really happening.

 

My time is limited. The thought of not seeing my boys when they become grown men hurts the most. At this point I had to have a CT-scan to see if there was further spreading and what could be done to prolong my life in a way I can physically cope with. The oncologist told me that the cancer was particularly aggressive and hadn’t responded to the chemotherapy I received when I had a primary tumor. She offered a different chemotherapy to try to control the spread. I will take it in tablet form and I won’t be losing my hair this time. This type of chemo doesn’t make me so ill either and hopefully does something. But it’s uncertain whether it will.

 

I’ll take it as it comes, although the uncertainty of the situation is making it very hard sometimes. Physically I have become more limited in what I can do. I’m out of breath very quickly and the coughing is very hard to deal with sometimes. We’re still moving to the Netherlands soon. I’ll cherish every moment I have with my family. My boys will still have a memory of me and I’m planning to write them a letter, make a photo album for them and a video message. That way they will always know how much I love them and I didn’t want to go. My husband is a wonderful father and he will do a fabulous job bringing them up. My family in the Netherlands are a great support and will do all they can to help. As my youngest son said to me when we told them: “but you are here now Mummy”, I am here now and I will get the best out of the rest of my life for as long as my body lets me.

Pinktober: cancer needs more than awareness

It’s that time of the year again when people are asked to wear pink and raise funds in the name of breast cancer awareness. I feel very uncomfortable with the huge influx of pink merchandise. Pink is associated with femininity. When going through treatment I often didn’t feel very feminine at all with no hair and the loss of one breast.

For me it raises a lot of questions at what kind of awareness is being raised. Is it making sure women are aware of the early signs of breast cancer? Is it about making sure people attend their annual mammogram? Will there ever be a cure? Do we need to be aware that some people die from the disease?

I had no idea what the early signs are even now. When I found my tumour it was already large and I have small breasts. I made an appointment with my GP the next day. He reassured me that it was a fibroadenoma – a benign lump – but to put my mind at rest he referred me to the breast clinic. That meant I had to wait for ages for my appointment and had to chase it up myself. Does that mean more awareness should be raised amongst GPs to make sure they are aware of breast cancer in younger women and what the signs are?

As for annual mammograms, I was too young to be called up for an annual mammogram. Yet there are plenty of young women who get diagnosed with breast cancer.

As yet there is no cure for breast cancer as such. After all the harsh treatments you get you just have to hope for the best it never happens again. It brings a lot of anxiety and I have to learn to live with that. I’m making plans for the future, even though I worry about it at the same time. Should there be more awareness raised for people who are moving on from their diagnosis? And how about awareness for people whose cancer does come back? What about secondary cancers?

I’m still processing a lot of what I have been through over the past year. My hair is back and darker than it was before. I have been to the hairdresser twice now and I feel great now it’s growing and getting a bit more style. As for the loss of my right breast, I’m still feminine without it. You can get lovely post-surgery bras and lovely swimwear too. I have a silicon prosthetic breast and it fits nicely in my post-surgery bras.

A lot of money is being raised for breast cancer as it is so common and men can get it as well. It’s a horrible disease and I would like to know more about what the money is being invested in. Although I have received excellent treatment, I still feel there is a lot of room for improvement. I’m due to have my check-up by the end of this month and I know that the anxiety will be overwhelming. The breast clinic is a very busy place and you feel you are put on a conveyor belt. I’m not looking forward to it, so for me it is not over and won’t be for a while. That’s why I won’t be having a party and I won’t be wearing pink.