It is now a little less than two years after my surgery for a mesenteric liposarcoma and I once again I have a mass in my abdomen: it has been confirmed as recurrent sarcoma. The alien has returned.
When I was first diagnosed I realised the tumour was very, very aggressive. So I wasn’t surprised that it had recurred. I felt like I had spent two years tied to the railway track knowing at some stage the train would come. Now I can see the train. I just don’t know how fast it is travelling.
I felt the recurrent mass three weeks before my follow up appointment. I couldn’t get hold of anyone to bring the appointment forward and I thought three weeks wasn’t long. But in that time the Alien has established itself and once again I feel like a snake that has swallowed an orange. Not only did the scan confirm a recurrence but this time it is worse - it is inoperable.
So now I am preparing myself for chemo. And, also, preparing myself for the chemo not working. My first session with Doxorubicin is booked. And apart from the lump I feel fairly well. So, I have time to get organised and I have 3 weeks before chemo.
First step: telling family and friends. We phoned family. With friends it was more difficult. I feel so lucky to have so many lovely friends but I felt bad telling people by email and I didn’t have the energy to visit or phone. How would they feel? But a close friend said that what was important at the moment, was not how they would feel but how I feel. That was such wise advice. So, for many friends it has been email. And the messages of support have been wonderful.
Death Tidying. The Swedes have a term Döstädning which roughly translated means death tidying. I have gone through my clothes and piled up stuff for the charity shop, gone through my drawers and chucked stuff out. It is still an ongoing task. I haven’t even started on my studio…I paint and my attic studio is full, full, full of stuff. And I am cleaning those bits that always get missed (at least by me) like the corners of the shower. It would be bad to succumb to infection from a grubby shower.
Relationships. I am trying to reskill my lovely ’significant other’. Over the years I seem to have taken over most of the domestic chores. Not because he can’t but because I am quicker and as far as cooking goes, less messy. So today he did the shopping. He likes a bargain. In the past we have ended up with no milk and lots of bad star fruit. Today was good. He did buy a beautifully fresh rainbow trout. But was shocked when I told him it needed gutting etc. We’ve saved that lesson for later.
I have written a chart of everything that needs to be remembered each day, each week, each month…and then I forgot it was dustbin day.
Making a memory bank. We had a ‘lifestyle photoshoot’. A local lady came and took photos of us at home. Casual, relaxed and un-posed. A small memory bank for my other-half. And for me a record of how I am when well and with hair. Normally I hate having my photo taken. This was good. And I didn’t shut my eyes…at least not in all of them.
I will sort through my old printed photos. There are some from before I met my husband and I will get rid of any that don’t bring happy memories and to be honest some go back so far there isn’t any memory of the time and place. I am still burdened with my parents’ huge photo albums and I don’t want to burden my husband.
Getting a comfy chair: For years we have had a futon in our sitting room. It is hard lumpy and inclined at an angle that gives me back ache. I sit on the floor (with the dog). We felt now was the time to get a new chair. So we ordered and Ikea rocking chair and with efficient speed a very large box arrived and because we were busy it sat there for a day. Then I got an email from someone I had never met saying she lived in Bexhill-on-Sea and she had ordered new cushion seating for her old Ikea chair and had received a large cardboard box ….with my chair cushion in. I duly opened my box to confirm I had the wooden structure and a large empty space….and no cushion. By the time I had got Ikea to resupply my cushions and hers I felt my friend in Bexhill-on-Sea and I should be on each others Christmas card lists. The comfy chair is just that…comfy. But the dog is miserable.
Finances. We have redone our wills and started to sort out finances. Changing my bank account into a joint account with my other-half will make it easier. I will do the form for power of attorney which I have been sitting on for months.
Clothes and hair. The Alien is getting uncomfortable and sits right under my waistband. Tights are uncomfortable. I am having to leave my trousers undone but that’s not an ideal option when out and about. So I have bought dungarees.
Then I had my hair cut short. Once it starts falling out I will shave it but this is a first step. I’m tempted to dye it orange but I might end up looking like a baby orangutan.
I walked out of the hairdresser and caught sight of myself in the window. Maybe I had overdone the shortness. I went straight into the next shop and bought a hat…much too expensive…and it itches. I thought short hair and dungarees would make me look fashionable and sassy. As it is my hair seems to go up in a quiff so I look more like Tintin.
Now I keep talking to people whose hair didn’t fall out with Doxorubin so maybe I shouldn’t have rushed into it.
Doing what I can to get healthy
I have tried to fatten myself up.
I had a flu jab whilst my immune system could still take it.
I have gone to Pilates and kept up the dog walking for Ellathedog our manic springer spaniel.
(One thing I wish I had known so I could have done something earlier is that my dog couldn’t have her kennel cough vaccine because I would be immunosuppressed within 3 weeks of her treatment.)
I have cleared up all my gardening thorn scratches with antiseptic.
My lovely brother-in-law has helped me with some Qigong exercises and visualisation techniques.
And I have signed up to the Macmillan community.
At times I have felt all this rushing around getting prepared was a mistake. I got stressed out. And I am sure there are other things I still have to do. But now I do feel more in control and relaxed.
Lastly I planted daffodil bulbs. Just in case I bought very early ones that flower in January. It is probably too late to plant them but it seemed worth a try.
This blog was originally going to be blog 2 and to contain photos…but I have given up on posting photos…just doesn’t work for me and my computer.
