Scanxiety

Hi

I'm so glad your consultant thinks the treatment is working.

Thanks for your honesty - I really appreciate it. I am struggling but feel guilty for that as so many who are so much worse.

I went to a wedding a couple of weeks ago and embarrassingly, the tears started flowing as I just had this awful realisation that I am not going to get to my children's weddings and those are the ones I really want to attend. I try so hard not to make everything about me but living with this diagnosis is all consuming at times I suppose. People tell me I look well and am coping brilliantly but they don't see the half of it! Easier for them to believe that maybe...

I was discharged from my psychologist in May as she was leaving for a new role. I couldn't face starting again with a new person so I agreed to leave it. I now miss it and asked for a re-referral when my treatment nurse (bravely) suggested I wasn't coping well. I got a letter saying that the service was very busy and if I felt I could manage with an online mindfulness app, someone else could have the space. This has really upset me as it took a lot to ask for the referral and now I feel guilty about wanting it. Not sure what to do. 

I have a consultation with onc next week - my cancer load is shrinking but my feet are suffering from the side effects. I am getting slower and slower and my feet feel like I've walked miles after just a few metres so I'm worried the treatment may be stopped or I'm going to be unable to manage to get about easily. Without my car (brain tumour ban), I need my feet. Like you say, you get used to one thing and then you're hit with more upset and hard. 

Don't feel guilty Tinalay - you are entitled to your feelings and I wish a long life for you as well as they rest of us - so much to enjoy like you say. We're all entitled to some joy. 

x

Gobaith, if I could, I would give my time to you in a heartbeat so you could have longer with your children. But it doesn’t work like that, and it’s not fair.

Your understanding and kindness is staggering in view of what you’ve been through and are going through.

At such a young age and with a young family you are absolutely top priority for face to face counselling and the demands on the service are not your problem.

As good as they are, sometimes the people in the cancer support services become a bit institutionalised, and don’t realise how hard it is to admit we’re struggling, let alone how hard it is to ask for help. Don’t let that braveness go to waste, stick to your guns, your children need you to get the best possible care.

I hope the problems with your feet won’t mean an end to treatment that’s otherwise working. But if the side effects are becoming too debilitating, I hope your onc will have another plan.

I’m having lunch today with 3 friends I haven’t seen for a while. I expect to hear ‘but you’re ok’ & ‘well at least’ several times. I’m beginning to avoid the ones who don’t or can’t acknowledge that this isn’t easy, as Daloni said, sack them!!

Good luck with your onc. I hope all of us will have plenty of joy in spite of everything xx

Golbaith. Do you have a Maggie’s Centre near you? They offer one-to-one sessions. I don’t know if it is as good as formal counselling but it might be useful while you’re waiting for a referral. The one in Newcastle has a psychologist on the staff. I agree with Tinalay that you have to prioritise what’s right for you. If the service is overstretched that’s not your problem. 

Hi Tina, Clare and Maybug, 

I recognise so much in what you all say. I have felt my horizons shrinking around me for several weeks. I’m slowly getting weaker. Able to do less. In more pain. The shadows of fear are looming. And then I start bargaining. If I can just see my youngest through GCSEs next summer...and I realise it’s another wave of grief I’m riding. So I get off.

These are thoughts that help. I may be drowning in 30 foot of water while someone else is drowning in 60 foot but we are both still drowning. It’s not a competition. There’s nothing to feel guilty for. There is every reason to reach out and be kind to those around us - just as we do here.

Another helpful thought is how much I have to be grateful for. A large and loving family. The NHS. A brilliant consultant. Modern drugs. Enough money to be comfortable. And so much more. Gratitude is an under rated virtue I think.

I also try to find the joy in each day. It’s hard when I feel unwell. Fortunately right now I’m feeling a little better. The antibiotics seem to have cleared whatever lingering kidney infection had laid me so low and my GP has put me on slow release morphine. I’m no longer feeling woozy from the opioid and I’m pain free pretty much all the time. I keep thinking “perhaps I don’t need this anymore?” Then it starts to wear off and I realise yes, I do. It felt like another step on the road accepting this level of pain relief. But seriously, why be in pain when I can avoid it? I try to be grateful instead.

I think we all know about scanxiety and its tricksy ways. I’m less affected by it these days, partly through force of will. I am not sure whether it’s healthy or not but something that works well for me when I start obsessing about anything is to tell myself repeatedly “I do not wish to think about this”. I had a scan last Friday. I won’t get the results until I get home from holiday next week and I’ve given it barely a thought. In truth I hadn’t thought about it all until I saw the title of this discussion (don’t you dare feel guilty, Tina. It was my choice to come on to the community. I’ll own that one, thank you).

On the subject of nhs psychology services, there’s nothing to feel guilty for Clare. That doesn’t solve the basic problem of supply and demand, however. Can you afford to pay privately? If so, it’s worth considering.

I wish you all a peaceful night. I’m so sad we all find ourselves drowning in this particular pond, but if we have to be here then I’m grateful you’re the ones alongside me

Xxx

There’s always so much wisdom & compassion in your posts Daloni. Someone should make them into a handbook.

I literally stopped breathing for a moment when I saw that it was my post that made you think about your results while you were on holiday, but you even saw that coming! Phew.

I realise I’ve lost the knack of making a choice not to think about something that I have no control over just lately. Scarlett O’Hara was the queen of that in Gone With The Wind.

Guilt comes up a lot in our posts, often unexpectedly. We all need to be as kind to ourselves as we are to each other.

Have a good weekend everyone, look after yourselves  xx

Thank you for your kind words,   

I am 100% letting my family look after me right now I’m on lakeside beach in the shade watching them all jump off a swimming platform. They are playing silly salmon. It involves jumping sideways into the water, hands by your side, flipping your body like a landed fish and ululating. No, me neither. It’s hilarious though. Best silly salmon is the winner.  

Xx

Hi Tinalay, I've just caught up with this post and the replies! I do hope your consultant is correct about the treatment working! My treatment also made my feet unbearably sore in fact a couple of times they lowered the dose for a week or two in order for it to settle a bit. With me it was extra skin growing on the pressure points and a nurse at the local Marie Curie hospice suggested instead of going to A chiropodist every month or two, why not try to go every week! It really worked quite well and even the chiropodist couldn't believe just how rapid the growth of the skin was and asked if I could manage twice a week! Maybe this is worth a thought if you have a similar problem! When I read about you telling your MIL about being grateful to be 70, it really hit a cord with me as someone I know was "dreading" being 60! The problem with them both is nothing as yet has made them think just how lucky they are and how precious this life is! In this group, we all know only too well! The trouble now is to concentrate on all the good things and stay away from morbid thoughts which sometimes catch us unaware!

I do think these thoughts come more to the fore when we have to go into hospital or don't feel so good or at scan time! It's human nature but sometimes it takes more strength than we think we have to steer our thoughts to positive things! To be honest, I can't remember just how many times I've said (to myself) I can't do this any more! But then I do because the alternative is to give up and I'll never do that!     Do you see your consultant again to discuss your results? If so, please keep us posted!

Hi Clare (Gobalth), I could really relate to you saying about crying at a wedding and your reason for this! The same happened to me last month at my neice's daughter's graduation, it came from nowhere. I was thinking I wouldn't see my grandchildren graduate! But then I had a "lightbulb moment" when I realised it wasn't long ago I thought i wouldn't see them starting school and our grandson started school last Thursday so is now in Primary 1 and our oldest granddaughter moved into P3. Our youngest granddaughter starts school next August, so I'm assuming I'll be here for that too! 

Regarding your councillor, it's a pity yours left.  It had got to the stage the councillor I attended for three plus months was telling me her problems but rather than tell anyone, I told her I thought I was ok to leave it for a while and contact her if I thought I needed an appointment! Stupid, I know, but as you say starting again with someone else seemed too hard at that time! It was many months later when I plucked up the courage to ask if I could see a councillor but someone different only to be told my original one had been off work for six weeks due to nerves and depression! Then I felt guilty because if I had said to someone earlier she may have got help earlier but who knows! I think we blame ourselves for things we have no control over and we certainly don't have any say in waiting lists etc. For once you must put yourself first. You should be a priority but it's because we all have this mask that says "I'm fine" that people see and believe. It's time to be honest and tell the truth. You deserve this more than most, please ask for help! Good luck!