It's a sunny morning here in Bristol, and I was just thinking about the range of emotions going on for us at this time of year, with Christmas around the corner and all that it brings. I'm sure I'm not the only one feeling a bit conflicted at the moment by Christmas being supposedly a joyous time when for so many of us it's enough just getting through the days. I'm thankful for having a very small circle of family and friends and we don't really do presents as such, instead we meet up for dinner or for a couple of drinks and find that being in each others company is more valuable than any gift.
This year I'll spending Christmas with my father, much the same as any other year. My mother died of cancer ten years ago and we only have each other in terms of family so we like to have a quiet time. Dad was diagnosed with primary kidney cancer about six weeks ago, with secondaries to his liver with two lesions in both lobes, and spinal cancer. He has total collapse of one of the vertebrae, but thankfully is in no pain. He'd lost a lot of weight over the summer, thought he had flu and just generally felt tired. He'd had some blood in his urine earlier in the year but thought nothing of it.
Fast-forward to late September and I was getting increasingly worried about him and didn't feel he was getting far with the GP, when I saw him one weekend he just looked dreadful and was barely able to walk. I ran him into A&E and he stayed in hospital for about three weeks. Multiple scans-blood transfusion-more scans-ultrasound-MRI-concerned looks by doctors though no one ever really told us much and he was diagnosed and sent home. I live 50 miles away so things have been a bit difficult with trying to think ahead to what needs to happen but we got there. We were told that Immunotherapy might be an option to suppress and curtail the growth, though this wouldn't cure him, and he would need to return home and come back to the hospital as an outpatient for this treatment to start. We duly did that and I ran him into the hospital a week afterwards to see Oncology who confirmed he is not suitable for any treatment as things are too advanced and we should make the neccesary arrangements to get his affairs in order, we would be referred for a Macmillan nurse/Palliative care team and to sit and wait for this.
In the meantime we'd had a hospital bed set up downstairs, I'd hired a wheelchair from the Red Cross and gone part time at work to go down to care for him every couple of days, to cook etc. He'd been started on Dexamethasone 2mg which was like a wonder drug for him. It turned things around in a few hours of taking it and he felt more able to get about which obviously is a boon.
Fast-forward again to today, he's managing things fairly ok at home, hates the hospital bed so we got a stairlift put in this week which has been brilliant for him. He has some pain at night which a prescription of codeine has helped with, and we are due to see the Macmillan nurse on Friday this week. The referral hadn't gone in so we'd been waiting three weeks for nothing, but there you go.
My sense is that at these times there is so much going on for us looking after our loved ones it's difficult to know what needs to happen/who we should be speaking to/who does what/what to expect. I'd have liked an idiots guide to caring for someone with cancer (maybe a niche in the market?) but a bit naively having been through this before (I cared for my mother for the entire six months from diagnosis to death) I assumed that things would be just the same, but of course we are in a different climate now and resources are stretched, teams work different and the treatments available are different too obviously. Don't forget the psychological needs for your loved ones and what MacMillan might be able to offer/signpost. We'd had a conversation with the GP about what the referral was for, and I was insistent that while we don't presently need to have a nurse in frequently, it would be a good idea to have an initial home visit, to meet with him/her and ask any questions. Reasurrance I guess. And for dad I think it would be good for him to have someone to talk to about things that isn't me. Someone on the outside.
I was reading another blog post on here about someone highlighting the need to look after yourself and not feel guilty for taking time out. You can't pour from an empty cup. I frequently feel angst and guilt for being so far away and not able to be there (at the moment there isn't the need as such to be there) all the time. I found laying the groundwork with a couple of friends really helpful, in that I'll be off the radar for a few months now but arrange to meet them regularly for a coffee for an hour or so, and I've brought in several routines which though small have been really significant in helping me through things. One of them is calling into starbucks (other coffee shops are available) for toast and some coffee when I'm shopping for dad at the supermarket next door. I grab a paper and give myself half an hour just to enjoy it before getting in the car and driving down to see him.
I bought one of those essential oil misting things like the sorts you see in Neals Yard. Only a cheap one from Amazon and some calming essential oils and try to leave it running overnight or just when I'm at home and taking some time out and find it really helps take the edge off. I've started cooking big batches of healthy stuff that I can portion and freeze. I'm often shattered/emotionally spent when I come home and it would be tempting to eat crap but I feel so much better for eating well and this makes it easier.
Lastly theres a Macmillan support group near me that although I haven't actually been to I think I'll try to get there soon. It's easy to feel conflicted by wanting to talk to someone about what you are going through, but then also feel bad for burdening or going on and on about cancer, and your friends feeling bad, even if this isn't the case. In my situation my dad hasn't wanted anyone to know anything about his diagnosis except one or two very close friends of his which though I understand and support him in any of his wishes, it's felt like being torn apart sometimes when I've wanted to talk to people but haven't been able to tell them anything.
That bit aside, there's some stuff about this whole process which I wish we'd known before. I'm not sure this is the right place for this as this is a forum for the carers of those with incurable cancer so you've all been through the test-furrowed brows-more tests-diagnosis stages but maybe this will help someone that comes across it.
1. Ask questions. When you think you've asked too many, ask more. Make lists of questions and insist on people's contact details and write down what they do and their role. I keep a card in my wallet with everyones name and number so it's always to hand. We made a list of questions and I kept a tiny pad with me all the time to write stuff down to ask. Amist all the chaos that cancer brings, you'll find your memory is shot and it's hard keeping to task on anything. One morning I was so distracted I put hair removal cream on my toothbrush instead of toothpaste, I stalled the car all the time, arrived at work without anything that I needed. This is human and a byproduct of this terrible disease. I'll come to work in a bit..
2. Think about money. It makes the world go round and we all need it. Ask for help from the Macmillan nurse or whoever is supporting you to guide you through things like Attendance Allowance. In our case we made the phone call for the forms while he was in hospital so this was waiting when we got home. I'm a social worker so had the benefit of knowing how to fill these forms out which helped. Go through the forms based on a bad day, write as much detail as you can on those forms and if you know your loved one can't cope with or physically attend an assessment appointment if they are asked to, SAY IT on the forms. For those of us with loved ones who are nearing the end of life ask about a medical professional completing a DS1500 form. This bypasses the waiting times for a response from the benefits agency (currently it's a three week turnaround with this form) and means the patient is eligible for the highest rate of the benefit guaranteed which is a relief.
3. Think about what your loved one might need just when coming home from hospital, not just the first few days/weeks but later down the line. There is much pressure for hospital discharge at this time, and the notion will be that as the patient has a carer/carers you will be able to manage. If you have doubts or need help, ASK. Hospital beds, perch stools, shower chairs, stairlifts, care packages, wheelchairs. Ask your Occupational Therapy team/Macmillan nurse about this. Again there is pressure on resources and saving money, but some of these will be available from hospital, some from the Red Cross and some you'll need to buy. We got a rental reconditioned stairlift for about £30.00 a month. It doesnt need to cost mega bucks.
4. Get care in early, if needed. Don't agree to discharge home without this. In my case I felt a bit fobbed off and mentioned the potential for a "failed discharge" if things weren't in place, which I know makes hospital staff shudder, so this meant things were a bit better planned. Call your local authority and get the ball rolling. Google a few care agencies near you that you have good reports about. IN my case I knew a few from my job when I worked in the area and though we don't need them at the moment, I have a list of a couple that I know are of a good quality, cover the area in which my dad lives, and with whom I've spoken to about his needs as and when the time comes. I'll ring them down the line when we need the care to start, and by doing this we've already covered our bases and made a good informed decision. None of us like to think about the end, and my experience is that at this time our emotions are all over the place, we make choices about huge things such as care providers in haste and it might not be whats best for us and our loved ones.
5. Get the GP on board. Chase chase chase referrals, home visits and medication needs. I speak with dads GP most weeks to set up repeat prescriptions, have a couple things in place as we need them - such as the codeine which he takes as and when for pain. It helps him sleep when his mind is racing. Get nutrition covered. Cancer is a beast for reducing appetite, and fortified drinks and shots help with much needed supplementary calories to keep strength up. I made the mistake of buying a load of these ready made drinks off the internet which was very expensive. I didn't know they could be obtained on prescription, nor that they could be delivered to the door. We keep a good few weeks in back up an he takes one or two a day when he's feeling too ill to eat.
6. Last and not least, when friends and family ask if they can help, ACCEPT IT!! We often feel bad for asking for help, don't want to put anyone out, and at these times when things are so out of control, the automatic response is to get some control back by managing everything ourselves and ploughing on, head down = carer burn out. Spread the load around. We humans are generally a well meaning and resourceful bunch. For example although we don't have any family except each other we've got some amazing friends. They take it in turns to call in on dad when I'm not there. One walks the dog. Another cuts his grass and brings him a paper. Another calls in every second day for ten minutes to wash the dishes and bring him some milk. We have a lovely lady down the road who knows he's got an obsession at the moment with apple crumble. She makes him a couple a week in tiny dishes so he won't feel overwhelmed by a huge portion and she leaves them in the porch for him.
Cancer is damn hard. For everything our loved ones are going through, the same is mirrored in us. If they are in pain, so are we. We walk with them every step of the way and we hold their hands in the darkest hours. But cancer is everything. They haven't always had cancer and we haven't always been in this position. Put talk of treatment/cancer/medication/appointments aside to get back to life for some respite, often. In our case we have lunch together after I've done everything he needs at home. We have a routine of egg and chips, always at the same time. We sit together for half an hour, eat together and watch TV. We talk about whatever it is on the TV and shelve the cancer talk for a bit and just enjoy being in each other's company before I leave him to it and come home. He looks forward to this and so do I.
I hope this has helped someone is some form, sorry I didn't mean it be such an essay it just sort of happened!
Love and light to you all.
Keith x
