Wednesday, December 16, 2015

Advent sock day 16

Today I met with the MacMillan nurse, who was excellent.
He undertook to query the radiotherapy outcome and ensure that Social Services and possibly a district nurse service are put in place before FL comes home.
I asked for the truth. He said the Haematology doctor we have been seeing this week had mentioned to him that she was disappointed that the Consultant had not been clear with us.
Yes, this is the end of the road.
It could be days, weeks, perhaps even months... but most likely weeks.
A lot depends on FL avoiding infections. He will require blood transfusions probably every two weeks and the MacMillan nurse can try to arrange for those to happen in our local community hospital to make it easier on FL. The journey from the farm into the city can be very stressful, particularly in winter.  When it comes to the point where he needs end-of-life nursing care this could also be in the local hospital.
I told the MacMillan nurse about my work position and he is going to refer me for a proper talk with an expert on employment and benefit rights. He said not to talk to my boss yet, until I am sure of what I want to do.  He said if my job is not the centre of my life, I might regret continuing to prioritise it over my last chance to be with FL: "You can always get another job, but you can't have this time with FL again".
I was doing so well at being brave until he said that!
He was going to see FL today or tomorrow to give him the chance to talk things through with someone who is not me.
He also advised me to consider asking my GP to sign me off work to get some time to rest and stay strong.  "In the real world, outside of here, that is what people do and it is entirely reasonable!"
When I got back to the ward, the staff nurse asked to talk to me and we discussed the help FL needs to manage at home if / when I am back at work after the holidays. She said it will be quicker to arrange with MacMillan involved. 
Our aim is to get him home for Christmas.

All very much more positive than yesterday, despite the "news".


Continue sock A by knitting 16 rounds in the color of your eyes.

69 comments:

twistle said...

I'm so sorry Roo - I'm wishing for you all the best times you can make in the time you have left, and the nurse is completely right, your time with FL is the only important thing at the moment.
*hugs*

Wakeymakes said...

Virtual hugs from Yorkshire K xXx ps socks are amazing

from103 said...

My heart goes out to you Roo. Get all the help you can from the district nurses when at home. The Macmillan nurse sounds very good, honest and helpful-what he says makes a lot of sense to me. Thinking of you and FL Sx

HappyAcademicRunner said...

Ask about personal leave. A colleague of mine took a couple of months unpaid leave to go to South America - I think it was six months. Then she came back and resumed her post. I am glad the Macmillan nurse was helpful but feel for both of you. Xx

Jenny Larking said...

Macmillan nurses are special people - no bullshit but caring and full of the Information and the help and advice you need. Thinking about you and hoping FL's final weeks or months will be comfortable and pain free. One thing is for sure, he knows how much he is loved.

Carol said...

As others have said, take this time together. Have experience of this, Marie Curie nurses also incredibly helpful. Thinking of you both. Xx

Denise said...

I'm so sorry. Hugs and prayers from Seattle.

Saffi said...

Roo, if you worked for me I'd want to offer you time off. Not just because it's a nice thing to do, but because your head won't be at work at the moment. Whatever happens next, you're going to need a bit of time and space to sort things out. I agree with the suggestion to speak to your gp about being signed off for a while with stress.

Saffi said...

Roo, if you worked for me I'd want to offer you time off. Not just because it's a nice thing to do, but because your head won't be at work at the moment. Whatever happens next, you're going to need a bit of time and space to sort things out. I agree with the suggestion to speak to your gp about being signed off for a while with stress.

RooKnits said...

Oh Roo, such heartbreaking news, but not unexpected I guess. Carpe Diem.... your time with FL is the most important thing now...Hugs xxx

amajorbreak said...

Thinking of you both Roo, I have been following you for a while now and have nothing but admiration for you. Be brave by all means but I hope that you are looking after yourself as well as you are looking after FL. You are in the thoughts and prayers of all of us who are reading along with you xxx

Athene said...

I'm sorry to hear this news but I sense that there's some relief in knowing the truth. You've been very courageous throughout this, and I'm sure that courage won't desert you when you need it. I'm glad to hear that the MacMillan nurse has been able to give some practical advice and support - here's hoping you can get FL home for Christmas with a proper support package in place.

Work is important of course but the nurse is right - you can't have these weeks again, I hope there's an option for you to take leave. Please keep us updated.

And the socks are looking great.

Mela R. said...

Sending you strength and hugs!

Lynn said...

The truth can be a hard thing to swallow. I am so sorry. Please give yourself time to process everything and let the arrangements be made that will enable FL to come home for Christmas. There is time to think about work, whether to quit or stay, and whether you can arrange leave once you get over the first panic and shock over where you find yourselves.

Thinking of you and wishing you well.

sewstyled said...

So sorry about the news but glad that you have had good advice from the MacMillan nurse for FL and you.

Based on the nurse's comment about employment, seems amoral that an employer could let an employee go instead of giving a leave. I would hope that your employer would give you a leave.

Knitlass said...

Glad to hear you are getting some useful help from the Macmillan nurse - and lots of referrals and advice.

I hope you manage to get FL home soon. That'll be important to both of you. Keeping you in my thoughts.

thornberry said...

Roo, I have been reading your blog for a long time but don't think that I have commented before.
It is good that you now know where things stand.
It is so so sad for both of you that your remaining time is limited.
Please look after yourself as well as your much loved FL.
Take care. I am a praying sort of person so you will both be in my prayers.

Unknown said...

Take care of yourself, my dear. I am hoping that the UK has something similar to our "Family Medical Leave Act" in the US. Up to 12 weeks (sadly, unpaid unless one has accumulated plenty of vacation and sick leave) of job-protected leave for situations such as this. Wishing you the best always.

MaryinTN said...

Dear Roo. I am glad you have the MacMillan by your side. Is there not some law that would protect your employment so you don't have to worry about that? Praying that is so. Talk to the employment law person. I am glad the social services and hospice is there for you and FL. In the meantime, spend all the time with FL that you can. That is what is most important to him and to you. My heart is breaking for you dear. Take care of yourself.

colesworth said...

Thinking of you all the way from Australia, hoping to hear you can stop working for a while.

Miss said...

Dear Roo. I'm sorry. Thinking of you and FL, and echoing the words of your friends above.
Grab onto all practical help available. So glad for the Macmillan nurse scheme.

Peace be with you and FL
xxx

Lilbitbrit said...

Thinking of you at this time. It is better to know the truth of things, then you can make decisions based on fact and your time together. You've been a strong girl, take the help you need and comfort that comes your way and that you can share.

paisleyapron said...

I am so sad your time with FL is short. Wishing you freedom from work, lots of loving moments with FL, and lots of help. So glad for the the MacMillan nurse.

Mary said...

I'm glad the Macmillan nurse told you the truth and sorry to hear what that truth is. Thinking of you both.
Mary

Jessica Walker said...

Dear Roo, You ARE so brave, even in the face of such heartbreaking news. Facing the end of a loved one's life is such a complex and profound experience, I have found. Thank you for sharing with us, even though it is so sad. Thinking of you both. Jessica

Sabs said...

Spend as much time with FL as you can, make the most of your precious time left together and don't worry about work. Make sure you get all the help you can in order to achieve this, you can't do it on your own but with help, you can both concentrate on just being with each other for the time FL has left. Sending hugs xx

Palava rakkaus, pikkusydän said...

I'm so sorry to hear the bad news, Roo. Stay strong in these difficult times, and focus on the now. It really is the only thing we have. Thinking of you, sending good wishes and strength your way.

Kitkat Krispie said...

I am so sorry to hear that this is the end of the journey. At least you have the excellent Macmillan team travelling the last part along side you. They are experts in the field and a font of all knowledge. Do not hand in your notice, you are entitled to compassionate leave. Definitely go to the doctor and get signed off initially because you must need sleep by now! I have my fingers and toes crossed willing FL home for Christmas. Take care and remember that your health and well being is essential at this time. I hope you are feeling the positive energy, and supporting hands from all of your blog readers, draw energy from that. x x

Carmen Bouchard said...

I don't know what to say. I've been thinking about you both everyday.
Sending love strength positive energy filled vibes.

Scruffybadger said...

Roo, I've had to catch up on your December posts in one go as I've been moving, and am so sad for you and FL. Make the most of this time and look after yourself too, so that you can stay strong. Sending so many hugs xx

annieloveslinen said...

It must be a relief to be able to get some straight answers at last. I would encourage you to take some sick leave in the short term this is an incredibly stressful time for you. The nhs website has some useful info http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/employment-rights-for-carers-flexible-working-unpaid-leave.aspx

Isabella said...

I might regret continuing to prioritise it over my last chance to be with FL: "You can always get another job, but you can't have this time with FL again".

He's spot on there. And I would be very surprised if your employment didn't offer some sort of compassionate leave instead of letting you just leave. In the short term, sign off. Did you join your union? They would support you if you have to go for complicated negotiations. In the meantime FL and time together are the priorities. And yourself of course. Pull in all the favours your friends and neighbours offer too, it's difficult to accept help but they'll all want to and it's being kind to them too. Get them to do the boring jobs like the shopping and errands, do some cooking for you, walk the dog. It makes them feel better to help and frees up your time. I didn't go out the house for three weeks when my son was in the last stages of his illness.

You'll get through this. One step at a time now. (((hugs)))

poppyinstitches said...

I'm so sorry, do take care of your self. The McMillian nurses are truely amazing. Hearing a nurse tell you it straight when others haven must have been so horrible, do take all the help they can offer. Thinking of you both rx

verykerryberry said...

Time is the most precious commodity, much love to you Roo x

Jane Neave said...

Take advantage of your time together and accept all the help you are offered you will find everyone will be so supportive helpful and compassionate. I send you a massive hug and am thinking of you both with love xxx

Laura said...

That MacMillan nurse sounds wonderful, just the kind of person you need supporting you both at the moment. I'm so sorry to hear the news, but it sounds like he's giving you good advice. I think you're absolutely allowed not to be brave for a while! You're fighting away for FL, and it sounds like you've got someone to fight for you now as well.

Take care of both of you xxx

rosylea said...

So sorry for you both, but glad that you have a better idea of how things are. Surely some sort of carer's leave is available to you, even if unpaid.

I have always found that knitting projects hold powerful memories of what was going on for me during the making; I think those are important socks on the needles...

Take care, Rx

Beth said...

Take the time that you have, and I can only hope your employer will be understanding. At least you have some honest answers.
Thinking of you and hoping for the best (whatever that may be at this point)

Violet said...

I'm so pleased that the MacMillan nurse was helpful to you. I hope that you can get FL the care that he needs.

Jen Forsythe said...


I'm so sorry you've received this news, even though you knew it was probably coming it's still very difficult. It's great you have the MacMillan nurse's help and advice now and more support. Much as you love FL, I'm wondering should you try and do some part-time work for a while, it can be extremely intense being at home in that situation. I left full-time work whenever my mum was very ill with motor neurone disease and it nearly broke me. It's also good to get out and see people, even a few mornings. Also I'm not that sure it is that easy to get another job, especially when you've been in a job for a good while. I'm sure they'll work with you. Anyway I hope you get him home for christmas, all best wishes.

Sew little time said...

Roo i am so sorry to hear this. Surely your work will be able to be flexible with you but agree with the dr that you wil never regret not spending this time at work even if it does mean looking for a new job. Reallt hope yoi can get this sorted out so you have less to worry about and can concentrate on FL. Thinking of you both. X

Sew little time said...

Roo i am so sorry to hear this. Surely your work will be able to be flexible with you but agree with the dr that you wil never regret not spending this time at work even if it does mean looking for a new job. Reallt hope yoi can get this sorted out so you have less to worry about and can concentrate on FL. Thinking of you both. X

seamedstraightforward said...

Long term blog lurker breaking cover here to say thank God for the Macmillan Nurse and the voice of reason. The time you have left together is so precious Roo, don't waste it at work. Can you get some carer's leave, unpaid if necessary?
Wishing you both strength, peace and comfort in the coming weeks.

pamela said...

Roo

Very important for you to have time off now with FL. But leaving work is a big decision. You need to have financial security in the future, and the upheaval of finding a new job can be very de-stabilising. Time off via your GP to recover your health and strength would be useful in the short term. But do, too, approach your employer about proper time off. Knowing your legal rights in advance would be helpful before you do this.The idea of compassionate leave occurred to me and, like a previous reader, I came across the very useful NHS Choices website. Under the heading Health A-Z, I found 'Employment rights for carers', and specifically 'Time off for dependants': apparently you have a right to this.

I also found a section on 'What benefits can carers get?' Again useful, with advice on 'Earnings replacement benefits', which may possibly apply to you. You should also be able to get your house adequately fitted to help FL get around, use the toilet and so on.

Your local Citizens Advice Bureau should also be able to help you with advice on your rights, and also your union, if you have one, and are a member.

I wish you luck with all this. So much to take on when you are worrying about FL, work, the faithful, home-alone dog. Miles away in London, I can offer no practical assistance (although I'd love to walk your dog), but if you need help with checking employment law on the internet, let me know.

I do hope you and FL have a better day today, and that his 'care package' is sorted out, including the radiotherapy.

Thinking about you both, and sending good wishes. Love the sox!!



shivani said...

Thinking of you both and sending strength and hugs. x

Sarahel said...

I so feel for you. I think you work in HE, as do I. There is provision for us to take, albeit a few days (up to a week, I think), 'emergency leave for dependents' or compassionate leave. Maybe a combination of these together with being signed off by the doctor for a while might help, at least initially. And surely your employer would at the very least grant you unpaid leave rather than lose you. Hope this can all be sorted out fairly smoothly so you can focus on FL. XO

Emma said...

I am so very sorry, dear Roo. You and FL have lived with this for so long and now, suddenly, you're approaching the end. Please accept virtual hugs, which I hope, with everyone else's, will help to support you through this.
Very good advice from everyone. The Macmillan nurse sounds very good. Get signed off work!
I am holding you both in my thoughts and in my heart.

Jodie said...

I'm sorry that there wasn't better news, but sometimes knowing is better than wondering. I wish there was something more practical I can do. Know that I (and many others) tune in here daily to read the news and are wishing and hoping for the best. You are in both in my thoughts.

colleen said...

This is sad news indeed. I so hope that you both find solace,comfort and support now and when you most need it, but most of all that your time together is the very best it can be.

Lorna A said...

I'm sure like others have said previously that you are entitled to time off work to be with FL. If they were to get funny simply ask your GP for a sick note due to stress and they will have to keep paying you!!!

zangmo said...

MacMillan are the best! This year I decided not to send out cards but make a donation to a charity....that is it decided now...I will give to MacMillan! Straight talking and sound advice is what you need and that allows you to make the right decisions. I am sure your work will be sympathetic to your situation. Don't do anything rash like handing in your notice as they should give you compassionate leave to allow you to spend time with FL. Much love and hugs. xxxxx

Gillian Hall said...

Emotionally and physically it's a very difficult road to travel so, as others have said, put your own health and well-being high on your list if you can. This time last year I went very part-time while coping with a similar situation. The work and change of environment did me good, but we had support from various agencies. That may be more difficult in a rural area.

I think it is helpful to know the truth. It helps one to plan and organize better.

Thinking about you both and hoping that your time together will be blessed. Very glad that you can use the blog as an outlet, too.

Minigranny said...

Thinking of you x

Su-z said...

My kindest thoughts are with your family. I do hope that you are able to take time off and care for FL and yourself without worries concerning work. Speaking from experience, it is usually easier to face bad news with a plan and good medical care. It sounds like your wonderful MacMillan nurse is helping with part of the equation. I wish I could be more help to you, but will send you my wishes for courage and peace from the US.

lemon said...

Hugs Roo, I wish thoughts from friends could help people..

christina neumann said...

Hugs to you and FL. At least you know what to expect now. I agree with the others. Time with him is most important. Ask for the work time off.

Charlotte said...

Oh weeping. I will add something perhaps not-intuitive -- it might be a relief to have a job to go to, especially if they'll let you come in part time, or take some leave. Sometimes, in the midst of things like this, it can be a nice break to have tasks to do that are not related to caretaking. You'll know though -- one way of the other.
I'm so sorry the end of the road is arriving -- my deepest wishes for good pain relief, and holding one another's love in your heart.

Helen // Grosgrain Green said...

Thinking of you both. X

Lizzi said...

Advice? who needs it - just follow your heart. God bless you both.

LinB said...

Ah, Roo, our hearts and thoughts and (for those of us who pray) prayers are with you and FL right now. It is better to know than to wonder, as Jodie said (above). It is better to have a time to say a proper farewell than not to have that chance. Remember to eat, yourself. Remember to get some rest, yourself. Remember to let your close family and friends do some taking care of you, too, at this of concentration on FL.

Remember that you are loved.

opakowana said...

I have heard only good things about MacMillan and Marie Curie nurses. I hope they look after you and FL well and give as much support as you need. It's a heartbreaking journey...sending hugs and more hugs.

moo2moo said...

Aw crap :(

Sadie said...

*hugs* I'm so sorry, Roo. But I'm glad the Macmillan nurse is prepared to be honest, and sounds helpful and supportive.

FWIW, as a manager in the same sector you're in, I agree with him about asking your GP to sign you off; no-one would dispute that you are suffering from stress, and I'm guessing you have a similar sick leave entitlement to us (six months full pay after five years' service), so you'll keep having money coming in whereas compassionate leave would probably end up having to be unpaid after a week or so. (A former team member of mine did exactly this a year or so ago, when his wife was terminally ill - he had several months off and I honestly don't blame him for a moment!).

Sending love and best wishes to you both xxx

Mog said...

Oh Roo, sending you a big hug across the cyber world. I've followed your blog for a while, and just wanted to let you know that you are very much in my thoughts.

Sending you strength and love,

Mog x

Lynn said...

Sending love and hugs from afar!

K.Line said...

I have a lot of confidence that FL is getting the most wonderful support from you - but I agree with everyone who says that you need support to keep providing it to him (and because you deserve it)! I think a short leave of absence, if it can be managed, sounds like an excellent plan. You need a chance to assimilate all of this. I agree with the commenter who cautioned against leaving your job altogether. You may well need an income. And the workplace, even when not optimal, can be a very good distraction and source of emotional shoring up xoxo.

agirlinwinter said...

I'm pleased the Macmillan nurse was supportive. We were assigned a MacMillan nurse to support my mum through breast cancer and she has been excellent. In fact, I've donated to Macmillan for Christmas - not much but enough to pay for someone to have an hour's appointment with a Macmillan nurse. I don't 'know' you, but I'm thinking of you x

Twelfthknit said...

So sorry to heAr the news. Very glad that Macmillan nurses are involved. Take care

obi duatilu said...
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