Aileen Lamb
Posted by
Aileen Lamb

Being at home - the outside world

Aileen Lamb
Posted by
Aileen Lamb
13 Nov 2015

After 31 days in hospital the simple act of walking outside and into fresh air gives me so much elation. And a fair degree of trepidation.

I’ve been cosseted in a world of infection minimisation. There have been professionals on hand 24/7 to respond to every random question or worry I’ve wanted to discuss about my condition, symptoms or side effects. Now I’m responsible for myself. Armed with loads of sensible and practical advice I still feel a bit like a new parent when they are handed baby……oh shit…..what if I break it!

I go for coffee and out for dinner…..I need to make the call on what’s safe to eat and drink and how busy, is too busy, in a cafe. I turn into Mrs “hand-gel” which makes me think I must have been a manky thing before. I am washing my hands more in a day now than I ever did in a week! And I’m having to avoid the easy way into town on the number 23 bus…….because buses are UNCLEAN!!!!

However despite all of these new wee elements that I’m having to work into my routine, it is wonderful to be out. Free. At home. I can eat and drink when I want. Lie in if I want to. Mooch about to my hearts content. Potter in my lovely new kitchen which was only finished a couple of weeks before all this merrygoround began. 

I’m enjoying the wee stuff. A walk in the Meadows. Going out alone and doing exactly what I want to do. A quick look around Harvey Nics. Normal stuff. Stuff that I took for granted. Until my life got interrupted.

Until something catastrophic occurs in your life I doubt that any of us would have the capacity to get our heads around just the level of interruption that is caused. We are happily on our wee treadmills of going to to work, going out and enjoying our life with our friends. We set our schedules. Make our own choices about what we do and when.

Since my diagnosis, despite my will to hang onto ownership of the bits I can control, I’m finding it a challenge to let the NHS machine take over so much of my every day life. It’s helping to fix me, but as I’ve said before, there are plenty of bits of the NHS that need a good fixing. Perhaps if I felt that the ‘system’ was more fit for purpose, I’d be more relaxed about letting go.

Until I do feel that way, I will be holding onto the control I’ve got and won’t be shy about voicing my opinion if I feel that some element of my care could be working better. 

I’ve never been able to bite my tongue – having leukaemia isn’t going to change that.

Comments

Lizzie Goates
13.11.2015

Hi Aileen, 

Just from reading your first blog post I can see how terrifying it must have been to get that phone call for you both and be rushed in to hospital so thank you so much for sharing your experience of your treatment.

I enjoyed reading your blogs for so many reasons, in particular, you gave an honest account of the NHS and its problems, you briefly talked about the effects of chemotherapy you encountered and you wrote about the infection you sadly got from your PICC line being inserted. These are issues that many people don’t know about and don’t affect them until they know of someone having treatment or they personally have it themselves, so thank you for highlighting them.

Your sense of humour also makes these blogs an absolute pleasure to read! I definitely let out a short laugh when I read about the riot you and your friend caused in theatre and getting the surgeon involved in a debate about which Islay Malt was the best.

I hope that you continue to write for us, so that I can enjoy future blogs, but more importantly so that you stay in touch and let us know how you are getting on.

Take care, Lizzie

17.11.2015

Aileen,

Thank you SO much for sharing this blog with us. I can relate to a lot of what you’ve talked about in this blog – not least the waiting and administrative processes with the hospital and I can also totally relate to the excitement/fear about being released in to the wild after hospital and the frustration about having to go to endless outpatient appointments – mine were 3 or 4 times a week to begin with and so frustrating when you’re desperate to get yourself back on track again.

All I can say in terms of advice from my own personal experience is that the gap between those appointments will increase in time once you’ve completed treatment and the trepidation of going outside and getting on with things again will decrease as your body gets stronger. Ironically I now actually look forward to my six monthly check-ups as they give me peace of mind and are a reminder of how lucky I am to still be here.

We're all here to help in any way that we can and if you have any questions or are in need of information or support at any time please don't hesitate to get in touch with our Patient Experience team on 0808 2080 888 or by emailing us at support@bloodwise.org.uk

Aileen Lamb
18.11.2015

Thanks Lizzie and Andy. I'm going to continue with the humour as much as I can.......life is definitely to short for sad faces. X

27.11.2015

Hi There!!  I am also recovering from AML. I've just started to feel strong enough to look online at all the information available!  I have to say I haven't found anyone in the same situation as me!  I was diagnosed at 39, may I ask how old you are?  Kind regards Anna

Aileen Lamb
28.11.2015

Hi Anna. I'm 43 so pretty close to your age. I've met the husband of a friend of a friend who was 38 when diagnosed with AML and is doing brilliantly today, 2 years on from the conclusion of his treatment. 

This gives me significant hope and motivation.

29.11.2015

Hi Aileen, Your blog reminds me so much of my sons experience in so many ways, he was 40 when he was diagnosed with AML In October 2013 and with 3 young children who he was unable to see for at least a month, (thank heavens for FaceTime. ) I won't say it's been an easy journey, but just over two years from diagnosis,  on 8th December his consultant is hopefully going to sign him off, no more hospital visits. Thank you for sharing your  experience and with your steely determination you will kick its butt. I wish you all the best for your continued recovery. Keep smiling Lynn xx

Aileen Lamb
29.11.2015

Thanks so much for your best wishes Lynn and please let your son know I'm keeping my fingers corssed for him on the 8th. That will be a big day and hopefully one full of celebration.

01.12.2015

Thank you Aileen, you are most kind, I hope you are enjoying the freedom away from the hospital and being able to breath the fresh air X