Update and reflection on the value of the Macmillan online community

1 minute read time.

The past week has gone pretty true to recent form. Lots of waiting and pockets of activity, mood swings both highs and lows.

J had another CT scan to confirm the results from the French scan showing no spread to the lungs - fingers crossed that is in fact the case! We are now waiting for the first appointment with the oncologist. Our wonderful (gorgeous) surgeon who is originally from Afghanistan and speaks perfect English spoke to the uk team and arranged to get all the missing files sent across immediately thus allowed them to start to plan J's treatment.

Meanwhile the glorious weather continued and happened to coincide with the start of the County Championships so Saturday was spent watching Middlesex toil against Lancashire at a resplendent Lords. A wonderful tonic (plus the odd beer!).

To the main point of this post:

A while ago I spoke about the difficulty I was having around contacting an old close friend. Her old lover had recently died of oesophagus cancer. I did finally contact her  and was looking forward to meeting up and having a good supportive conversation. We planned to meet for lunch. I was extremely stressed and badly in need of talking to someone other than J who had been through something similar and would hopefully understand the ups, downs, hopes, fears etc.

She was half an hour late with little apology. We shared some small talk and I asked how she was doing- not well but not wanting to say more- coping, being strong. Ok - change subject. Asked how I was, we were- I told the recent story and she said something sympathetic. But I didnt feel able to talk about us or myself in the face of her own deep grieving. This was a visceral shock and its taken a while to process. But I now realise that for me the value of this blog is in not needing to apologise or deny the thoughts and feelings we're going through. And hopefully someone will recogine themselves and not feel so alone. And I know that many of you will relate to the small but momentous event of your husband having his first erection following colorectal surgery for example!

Anonymous
  • Hi  , thanks for updating on this, as you mentioned you were going to contact your friend. It sounds like your friend is still struggling with her own situation and was not ready to process your news yet. It must have been, in a way, disappointing (difficult to find the word for it). I don't know, maybe you hear back from her once she realises that you needed that support or that deeper conversation. 

    Last week I saw a friend I haven't seen for over a year. Wasn't really a typical 'friend', he was 15 years older than me and I was house sharing with him and others for 5 years. But during Covid we started going for walks and other bits and spent a lot of time together in the garden etc we bonded quite a bit. I left that house to move in with my girlfriend about 3 years ago now, but I kept in contact with him and we'd have a beer every 3-4 months. Because I didn't change an address on one of the NHS or GP databases, I got a referral letter going to that house, so I met with him and told him I was going to get CT scans and biopsies for potential cancer... He shut down a lot, he recently had lost his dad to cancer and I think this hit him hard.

    So, last week, after about 14 months, I messaged him to see if he was free for a coffee and we met. Being brutaly honest, I think he was surprised to see me alive. He said he was sorry for not reaching out but he didn't really know how to handle it and that he was worried I wasn't doing well or if the treatment hadn't worked. We talked a bit about it and other things and he kept saying I am so happy and this and that, so we will be meeting again soon. 

    I don't know, there are a lot of good people out there but they also protect themselves a bit too much at times. I was a bit unhappy with his attitude all year around but now I think I understand that he was just too scared, and because of his dad's experience I guess I have to accept that it was fine to act that way... Idk.

    About the blog and the forum, same for me. It's a way of sharing your feelings in a particular way, not expecting anything, but appreciating when someone feels identified or relates with your experience. And I think this is what helps me the most. I wish this was a bit more active, there's loads of people who read but don't comment and many others that just add one post and never return... This is a great resource and could be so much better I think... I joined the Lymphoma Action facebook group and there are like 20 posts a day and each posts gets another 10-20 responses, but I don't like the format of facebook, it is a bit too intense sometimes as people just type their thoughts with no filter, while here you give some thought to it before posting, I think. I feel comfortable posting and commenting here but not on FB, while for others it's the other way around.

    Anyway, too much writing! Have a good weekend and enjoy the sun and the tonics!

  • Thanks for replying so thoughtfully and at such length. Its given me a lot of food for thought and reflection. It reminded me of the time soon after my first child was born when it became obvious that she was not like my friends babies.  She was developmentally delayed and later diagnosed with autism. They had no idea how to respond. Everything was going to be fine in a few months etc It was only with the specialist pediatrician that I could discuss hopes and fears about her future. I met mothers in similar situations at a nursery but even then conversations were awkward when their children was more disabled than mine. I was reminded of this when my husband was recovering from surgery. Talking to he wife of another English man on the unit became difficult when it emerged that her husband was going to need chemo and mine didn't at that time. The shared experience had been nullified and there was nothing more to say.

    I am glad you have remade contact with your friend. I think it will be ok in time with mine but fir the moment my lover is alive and hers is not and I get how hard that must be.

    I agree about Facebook too. Both Brexit and the recent general election taught me not to express opinions on that forum so it is reduced to family photos and cats.

    Have a good rest of the weekend Hugging