A chat with a friend this week has made me realise that a big fear for so many of us with a long term diagnosis of cancer or other condition is the loss of independence, the fear that suddenly you need to be "looked after" and become vulnerable to the vagaries of the world around you as treatments come and go and your ability to function fluctuates. I'm not going to lie - in my experience there are elements of that - you get swept up in a cycle of treatments, tests, appointments, side-effects and feelings that can overwhelm, frighten and bemuse and make you feel as if nothing will ever be right again but for us it hasn't been like that all the time and so I thought it might help someone out there if I wrote down a few things that have helped me feel like me despite all that is spinning around us.
Despite everything that has to happen around treatments and the illness there really are things you and your loved ones can do to give yourself room to breathe, to take control of the maelstrom and arrange your life and living to fit your new reality, if that's what you want and need to do. There is, in our experience, lots of help and support out there, although to be fair sometimes you have to hunt and badger for it and it can vary from area to area, condition to condition.
At this point it's only fair to put a few cards on the table as it may affect how some of you read and react to this post. After years of living fairly frugally and having reasonably well-paid jobs without the desire for the life-style that often goes with that, we are lucky to be in a financially secure position. This means we have been able to use that to our advantage and, if we identify some piece of kit we think might be useful or service we need to access we've been able to pay for it. I know that for a lot of people that is not the case and that adds yet another horrible dimension to an already terrifying illness and adds pressure that no-one needs. I do know that there are organisations out there that can help with grants, benefit applications and other support as I have been offered support on several occasions and will link to a few useful folk at the end. If you need the help please, please look for it and don't suffer in silence, the system is supposed to be there to support you not make life harder and there is no shame in hunting up the help you need even if it sometimes feels as if everything is stacked against you. (Sermon over I promise!)
After I'd come through the initial diagnosis and whirlwind of emergency treatment and first chemo my biggest fear was the loss of control and independence that came with feeling weak, ill and just not knowing what was around the corner. I needed help, was happy to have help but didn't want to be totally dependent on anyone no matter how much I loved and needed them in other ways, otherwise what was the point of anything. I needed and still need to be able to feel like I am living my life, enjoying our home, relationship and all that entails on terms that make it worth living. That has meant accepting that changes had to be made to the little things around the house as well as making a few bigger alterations and so eventually I swallowed my pride and started to hunt up kit and advice.
Our first stop was the local health service - they came to us - not letting me leave the hospital without doing a home assessment and providing us with the kit they thought we'd need - things like an extra bannister rail, a commode (possibly TMI but vital in the first few weeks home when I was limited to going up and downstairs once a day), a toilet frame, perching stools and a bath board so that I could do what I needed to do whilst sitting down and then get up again!
They added a second stool to the kitchen so that I could sit at the worktop or sink or just grab it and sit if getting out to the kitchen had proved too much. Believe me when I say the commode went back as soon as humanly possible and provided a great incentive to do the strengthening exercises the physios had given me! I still have the stools and other kit as they are invaluable on tired days and really make a difference to what I am able to do for myself.They also provided a manual wheelchair which we've subsequently returned as we have our own. All of this support came free of charge and periodically they get in touch to see whether I need any further support.
They, along with a wonderful physiotherapist attached to the hospice also gave us the chance to try other things out to see if they suit - things like a walking frame and exercise kit - by trying different ones we were able to go on to buy a little tri-walker that folds up easily, is relatively lightweight so that I have been able to put it in the car and get out by myself over the summer. It also means I can get about outside without having to carry a bag and aggravate the back pain. We added a brilliant tray trolley that means I can easily move things around from room to room downstairs - it even gets used as an impromptu potting bench as the trays come off easily for washing and just this morning I've used it to help me empty the washing machine and move the contents to the drying rack without lifting too much. We actually picked this up in the hospice charity shop really reasonably priced but I'm pretty sure that the health team would have provided one if I'd have asked. We've got the manual wheelchair for days when I need extra help but luckily they are few and far between at the moment but it does mean we can go a bit further afield if I want to and J's around.
The biggest expenses have been one of those riser recliner chairs - especially made to be the right size and height for me and supportive for the back and cushioned to prevent sores developing if you have to spend extended amounts of time in it and an adjustable bed as I can no longer lay flat and sometimes need extra help to get up. These have both made a huge difference but were a big investment. Our district nurse team did say that there are local grants available for folk who need stuff like this but can't afford to buy it so it is worth enquiring in your area if you think you would benefit from kit you can't afford. Our most recent investment is a very good rotating table that sits next to my chair but that I can easily move to the side when I need to get up and down - the medical ones would be too heavy for me to shift myself but the one we've got has a 360°swivel top. J installed it fairly easily and now all I have to do is push the top aside to get out of the chair. The great thing about this is my laptop is at the right height and I can rest a proper book or anything else I want to do on a cushion on it and read and type without hurting my neck and back as well as using it to eat off or whatever. It's made a huge difference to managing pain levels and helping me keep occupied already. Again it wasn't the cheapest available but it doesn't look like it belongs in a nursing home and I can use it without help which was vital so we're happy and I'll pop a link to Amazon below just in case anyone else out there would find it useful too. One of the cheapest and simplest investments we made came very early on - a couple of those grabby sticks that you see litter pickers use - one for upstairs and one for downstairs so that when I drop stuff it's easier to retrieve. I've also found a little wooden over the knee table that fits my laptop or book when I'm in bed so that I can read without too many extra aches and pains.
Despite everything that has to happen around treatments and the illness there really are things you and your loved ones can do to give yourself room to breathe, to take control of the maelstrom and arrange your life and living to fit your new reality, if that's what you want and need to do. There is, in our experience, lots of help and support out there, although to be fair sometimes you have to hunt and badger for it and it can vary from area to area, condition to condition.
At this point it's only fair to put a few cards on the table as it may affect how some of you read and react to this post. After years of living fairly frugally and having reasonably well-paid jobs without the desire for the life-style that often goes with that, we are lucky to be in a financially secure position. This means we have been able to use that to our advantage and, if we identify some piece of kit we think might be useful or service we need to access we've been able to pay for it. I know that for a lot of people that is not the case and that adds yet another horrible dimension to an already terrifying illness and adds pressure that no-one needs. I do know that there are organisations out there that can help with grants, benefit applications and other support as I have been offered support on several occasions and will link to a few useful folk at the end. If you need the help please, please look for it and don't suffer in silence, the system is supposed to be there to support you not make life harder and there is no shame in hunting up the help you need even if it sometimes feels as if everything is stacked against you. (Sermon over I promise!)
After I'd come through the initial diagnosis and whirlwind of emergency treatment and first chemo my biggest fear was the loss of control and independence that came with feeling weak, ill and just not knowing what was around the corner. I needed help, was happy to have help but didn't want to be totally dependent on anyone no matter how much I loved and needed them in other ways, otherwise what was the point of anything. I needed and still need to be able to feel like I am living my life, enjoying our home, relationship and all that entails on terms that make it worth living. That has meant accepting that changes had to be made to the little things around the house as well as making a few bigger alterations and so eventually I swallowed my pride and started to hunt up kit and advice.
Our first stop was the local health service - they came to us - not letting me leave the hospital without doing a home assessment and providing us with the kit they thought we'd need - things like an extra bannister rail, a commode (possibly TMI but vital in the first few weeks home when I was limited to going up and downstairs once a day), a toilet frame, perching stools and a bath board so that I could do what I needed to do whilst sitting down and then get up again!
 |
| Perching stool helps in the kitchen |
 |
| Tri-walker and cane |
 |
| handy tray trolley |
The biggest expenses have been one of those riser recliner chairs - especially made to be the right size and height for me and supportive for the back and cushioned to prevent sores developing if you have to spend extended amounts of time in it and an adjustable bed as I can no longer lay flat and sometimes need extra help to get up. These have both made a huge difference but were a big investment. Our district nurse team did say that there are local grants available for folk who need stuff like this but can't afford to buy it so it is worth enquiring in your area if you think you would benefit from kit you can't afford. Our most recent investment is a very good rotating table that sits next to my chair but that I can easily move to the side when I need to get up and down - the medical ones would be too heavy for me to shift myself but the one we've got has a 360°swivel top. J installed it fairly easily and now all I have to do is push the top aside to get out of the chair. The great thing about this is my laptop is at the right height and I can rest a proper book or anything else I want to do on a cushion on it and read and type without hurting my neck and back as well as using it to eat off or whatever. It's made a huge difference to managing pain levels and helping me keep occupied already. Again it wasn't the cheapest available but it doesn't look like it belongs in a nursing home and I can use it without help which was vital so we're happy and I'll pop a link to Amazon below just in case anyone else out there would find it useful too. One of the cheapest and simplest investments we made came very early on - a couple of those grabby sticks that you see litter pickers use - one for upstairs and one for downstairs so that when I drop stuff it's easier to retrieve. I've also found a little wooden over the knee table that fits my laptop or book when I'm in bed so that I can read without too many extra aches and pains.
Before anyone has an apoplexy about my blasé expenditure it hasn't been all about having to have new or extra stuff I promise. We happened to have a spare kettle left from when we cleared a family house (we couldn't bear to get rid of something that worked) so we've now got a kettle in the bedroom which means I can make a morning hot drink without spilling it on the stairs and me. We also keep a couple of packet soups and harvest-type bars up there so that when I am having a really low power day I've even got food upstairs. It's brilliant for lazy weekend starts too! I keep a couple of long handled bags at the top and bottom of the stairs so that if I do have to transport things up and down I have my hands free for the bannister rails, safer for me. With the help of my mum and J we've shuffled drawer, freezer, fridge and cupboard contents around so that anything I need on a daily basis or when I'm on my own is easily to hand and I don't have to do a lot of bending, carrying or shifting - things like everyday clothes, cups, glasses and that kind of thing are all in easy reach and mean I can get dressed, fix food and just exist without needing to exert too much energy on the low days. Early on J moved some of the heavier chairs around the house so there is always somewhere I can perch and know that I can get up again or hold onto if I get unsteady - this has proved really handy again now I'm back on the chemo and my energy levels are a bit reduced again. There are baskets and boxes dotted round the house with the things I might want during the day/week like medicines, chargers or books and J checks before he goes back to work in case there is anything in particular I might want to do whilst he's not around. Another thing I do is use the kitchen blackboard a lot as a memory prompt - notes to myself (and J!) that the dishwasher is filling, emptying, what time I need to switch the battery charger off and all manner of similar reminders.
For everyone's piece of mind I also agreed to an emergency button from the Lifeline service. This is a charged for service that provides 24hour help to folk that need it and whilst I haven't had to use it an emergency yet, I have accidentally set it off a couple of times so know the response is comforting and quick!
When it comes to managing appointments, shopping and things like that the Internet is truly our friend and I wouldn't be without it. J and I share an online calendar so that he knows what appointments I have coming up and can juggle work and his other commitments around them and I can see where he is if I need him for anything. I also use a separate calendar to keep track of my day-to-day medication - putting in reminders of what to take and when and keeping track of where I am with the day which helps when the brain gets a bit stressed and loses track of where I am with everything. We even use the direct message service on Twitter to keep in touch during the day without disrupting his work. The Google Keep note-taking app comes in handy too as we can share notes and even shopping lists on there - for example we have a shared note for all my different medication, another with emergency medical contacts, a third with the contents of the hospital go bag and what might need adding to it if I have to go in at short notice - it happened a few times over last year so has already proved worth having and the app is really easy to use. I supermarket shop online too which, whilst I miss the odd wander around the shelves means I'm still choosing what I want, can create the list as and when I remember that I want something and once it's delivered can put it away slowly - on really low energy days I pop the fridge and freezer stuff away and leave the rest for J when he gets home or for later when I feel more like doing it so there's no pressure. But above all that being online also means I can keep in touch with friends and family, have an outlet through this blog and all the lovely ones I follow and see what's happening in the world which helps me still feel part of it whenever I need to and that has been a really important.
This has turned into an extremely long post but I really hope it might help someone out there feel slightly less helpless or hopeless and find a way through whatever maze they are in.
Bye for now Tx
For everyone's piece of mind I also agreed to an emergency button from the Lifeline service. This is a charged for service that provides 24hour help to folk that need it and whilst I haven't had to use it an emergency yet, I have accidentally set it off a couple of times so know the response is comforting and quick!
When it comes to managing appointments, shopping and things like that the Internet is truly our friend and I wouldn't be without it. J and I share an online calendar so that he knows what appointments I have coming up and can juggle work and his other commitments around them and I can see where he is if I need him for anything. I also use a separate calendar to keep track of my day-to-day medication - putting in reminders of what to take and when and keeping track of where I am with the day which helps when the brain gets a bit stressed and loses track of where I am with everything. We even use the direct message service on Twitter to keep in touch during the day without disrupting his work. The Google Keep note-taking app comes in handy too as we can share notes and even shopping lists on there - for example we have a shared note for all my different medication, another with emergency medical contacts, a third with the contents of the hospital go bag and what might need adding to it if I have to go in at short notice - it happened a few times over last year so has already proved worth having and the app is really easy to use. I supermarket shop online too which, whilst I miss the odd wander around the shelves means I'm still choosing what I want, can create the list as and when I remember that I want something and once it's delivered can put it away slowly - on really low energy days I pop the fridge and freezer stuff away and leave the rest for J when he gets home or for later when I feel more like doing it so there's no pressure. But above all that being online also means I can keep in touch with friends and family, have an outlet through this blog and all the lovely ones I follow and see what's happening in the world which helps me still feel part of it whenever I need to and that has been a really important.
This has turned into an extremely long post but I really hope it might help someone out there feel slightly less helpless or hopeless and find a way through whatever maze they are in.
Bye for now Tx
Links to stuff (these are NOT affiliate links just examples of what I've found useful)
Our Grabby sticks - https://www.amazon.co.uk/gp/
Rotating table - https://www.amazon.co.uk/gp/
Links to National Help
Macmillan Cancer Care - information, advice and practical support. Online forums
Cancer Research UK - information and advice. Online forums
Hospice UK - information, advice and contact details for hospices
GovUK benefits page - information and application forms
Citizen's Advice - information, advice and practical support to apply for benefits as well
Breast Cancer Now - information and advice
Lifeline24 - Emergency button and help service
Links to local help in South Warwickshire
The Shakespeare Hospice - Day Hospice, Complementary Therapies, Art therapies, Hospice at Home, Family Support, All round wonderful folk!
South Warwickshire NHS Foundation Trust Cancer Teams - Medical teams, community support and palliative care nurses in Warwick and Stratford.
The Myton Hospice - residential hospice in Warwick.
Warwickshire Libraries - information, advice and lots of free stuff to do online as well as in branches. Home Delivery service if you need it.
Links to National Help
Macmillan Cancer Care - information, advice and practical support. Online forums
Cancer Research UK - information and advice. Online forums
Hospice UK - information, advice and contact details for hospices
GovUK benefits page - information and application forms
Citizen's Advice - information, advice and practical support to apply for benefits as well
Breast Cancer Now - information and advice
Lifeline24 - Emergency button and help service
Links to local help in South Warwickshire
The Shakespeare Hospice - Day Hospice, Complementary Therapies, Art therapies, Hospice at Home, Family Support, All round wonderful folk!
South Warwickshire NHS Foundation Trust Cancer Teams - Medical teams, community support and palliative care nurses in Warwick and Stratford.
The Myton Hospice - residential hospice in Warwick.
Warwickshire Libraries - information, advice and lots of free stuff to do online as well as in branches. Home Delivery service if you need it.
What an incredibly brave, honest and sensible post.
ReplyDeletexxx
Thanks Jayne
DeleteThank you so much for this incredibly useful post. I’ve put the perching chair and the walker tray on my Amazon list and will save the post for future reference.
ReplyDeleteI wish you well.
Sarah in California
Thank you Sarah, I'm so glad you found it useful even so far away from here. All the very best to you.T
ReplyDelete