It is ten weeks today since I lost my husband. He was diagnosed with Hairy Cell Leukaemia in 1999. Treatment for previous relapses had been successful, so his death came as a shock. I wake up every morning and still can’t believe he’s not here. I am also unhappy with some of the care and treatment decisions, which I am finding difficult to cope with.
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Hello there, i didn’t want to run past your post without stopping. No words of wisdom but just to say im thinking of you, sending you healing wishes and recognising it is so very early days as you reel from this loss. No cliches here, even if they are based on reality mostly, but a safe space to share your loss. Different i know, and i hesitate to even say it, but my lovely dad (im such a daddy’s girl even as 50 is knocking!) is gone a year this Sat. Those we loved will always be loved and missed, even as we try to grow at least a little round the hole they leave. Do post again and know that your loss matters to us here. Take good care
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Oh @MrsBlueSky thanks so much for having the courage to post at such a very sad time for you.
@judesadventures says it far better than I can.
Perhaps there is no right or wrong way to grieve and it is so painful and is a process.
Please do use our forum to say how it really is for you.
Be ever so kind to yourself and the Blood Cancer UK support line is also there for you on 0808 2080 888
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Hi Just wanted to say how sorry I am to hear about your loss
Sending hugs
Take care
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Hello @DottieB
Nothing can fix this or take away the pain of loss. But there are services you can lean on. Sometimes just connecting with others who are grieving here in the forum or just reading what others have said can be a real help.
You can also contact take a look at the Support Services.
Or for further support you could talk things through on (tel:0808 2080 888) or support@bloodcancer.org.uk
Thinking of you.
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There are no words for loss just know your in my thoughts
Will link you how to complain to the NHS
Start by contacting PALS
It’s a start to healing that pain
How to complain to the NHS - NHS.
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Thank you to everyone for your kind and supportive messages.
Thanks @2DB I have written to PALS. You are right it did help to do something positive x
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Hi all,
Well after 59 years of marriage I am a widow. The celebration of life cremation is over I must get my life reorganised. The coffin was wheeled in by his 2 granddaughters, his son in law and nephew to the bbc formula 1 theme music, a couple of appropriate poems the these are the days of our lives by Queen followed memories of Bill’s life , the Lord’s Prayer and ended with Cilla Black singing your my world. Bill loved to watch Formula 1, h was completely tone deaf but always joked he liked Cilla Black. He wasn’t religious in the slightest, I couldn’t bear the thoughts of a vicar pretending he knew Bill so I asked a family friend to conduct the celebration and it proved the right thing to do. Laughter and tears combined to sooth and comfort close friends and family.
I am now left with my Polycythaemia vera (PV), PF and PH conditions and a lovely son and daughter, and my treasure of a carer not to mention a Jack Russell Pip. My INR has shot up to 4.7 probably due to stress. I have now to face my dearest niece’s cremation on the 22nd May she was far to young to die at 59 she had MS but cancer caused her death four days after Bill.
I must be almost due an haematology consultation soon, that will be interesting.
Life goes on, Marylin
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Aww @Marylin
I am so sorry for your loss , can’t imagine being without my grumpy but very loveable one .
Please take care of yourself and take time to deal with all that needs to be done
Sending best wishes
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Oh @Marylin what a celebration of Bill’s life, it sounds perfect to me and what a good idea for a family friend conduct it.
I am so sorry that you appear in limbo with you nieces cremation still to come on the 22nd.
Then perhaps you just need time to grieve.
Your forum family is always there for you and you are never alone.
Please do let us know how you are after your niece’s cremation, your haematology appointment and beyond.
I will be thinking of you and sending you virtual hugs xxxxx
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Hi
I am not in the best of places at the moment. My lower back has gone into spasm and is rather painful, so much so that I have been sleeping in my riser recliner chair since Saturday . My INR has shot up to 4.5 for no apparent reason. All probably caused by stress. To add to my woes my bank had me on the phone ensuring I wasn’t being scammed for half an hour, it appeared that in the account details the funeral directors had given me had ‘and’ in full and their bank account name uses an ampersand. I rarely make payment transfers in thousands so it was nice to know my bank is looking after me.
A blood test tomorrow for my consultation next Tuesday on the phone with haematology. They did increase my pain patch dosage to help with my back when I went for my INR test yesterday. Covid jab on Saturday. I feel like a pin cushion. Today the boiler ceased to work, my son thought he had fixed it before going to get on his flight to China. Sadly ERR 108 has appeared again, so no central heating or hot water again and he is in midair.
I think a double dosage of chocolate is called for. Marylin
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Oh @Marylin I just do not know what to say apart from final straw springing to mind.
I think stress also has a lot to answer for.
In feeling like a pin cushion is rotten.
As for the boiler, well.
The only only positive is that your bank is on the ball.
I really agree at least a double dosage of chocolate is in order.
I am so glad that you have posted please do keep doing so and yes, we certainly are there for you.
Please do keep posting and be ever so kind to yourself
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Hi
Phoned the plumber this morning!he was on the doorstep in two minutes, is this a record? He was actually just passing. I. Now have heating and hot water and I need an appointment to service the boiler.
I need to sort out the direct debits for the electricity, gas and water. Also need to sort out the council’s contributions towards my carers payment. The double dose painkiller patch is giving me brain fog, I keep dozing off.
Pip my Jack Russell decided to consume a dental chew she has always refused to eat. Pity it was 3am in the morning she decided to crunch. I have a lovely bowl of metallic Iris coming into bloom, they are a lovely purple! Blue bronze colour a delight to see. My bowls of varied bulbs. Have given me a lot of pleasure this year and hopefully they will do so next year .it will soon be mid summer or mid something, not a lot of summer about yet.
Marylin
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Wow, what a plumber and so glad that you have heating and hot water again.
Be very kind to yourself, perhaps you are exhausted emotionally, physically, mentally and practically. I always think that sleep is a healer.
As for your lovely purple bulbs, I often think about your colourful garden, you have worked so hard on it over the years.
There must be so much for you to sort out, perhaps small goals, it might be too much as whole to cope with.
Perhaps Pip is grieving too
Look after yourself and please do keep posting
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Dear Marylin,
I am sorry to read of your loss and all the troubles you have had since.
I just wanted to echo what @Erica has said, do be kind to yourself!
If we can support you in any way please do call us on 0808 2080 888, we would be happy to have a chat.
Enjoy the flowers and some hopefully warm weather.
Take good care,
Heidi J (Support Services Nurse)
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Thank you DottieB for your kind words. I am writing this at 2.30am in my riser recliner chair. I did try my bed but the lower back kept going into spasm and waking me up. I am picnicking on tea, malted milk biscuits and paracetamol as I write.
I think I have sorted out the utilities direct debits but only time will tell. I still have to tackle the Cornwall county Council as they have increased the percentage they pay me to wards my attendance allowance. Brain fog is preventing me from starting it caused by increased dosage of pain patch.
Marylin
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Oh @Marylin I am so sorry that you are still awake at 2.30am in your riser recliner.
What a concoction you are picnicking on perhaps don’t overdose on any component.
Do you know I haven’t had a malted milk biscuit in years, my son used to call them moo cow biscuits.
I can really empathise with your back and remember rolling out of bed and crawling to the loo on my hands and knees.
You have done well tackling the utilities.
Be very kind to yourself and I can testify to the effect of stress and grief on me tensing up and worsening my pain and spasms.
Please do keep posting
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That sounds tough. Being in pain and having no sleep is the worst ,
tea and malted milks are good though , paracetamol not so much but I hope you’re getting some relief
The utilities companies have people to help and hopefully they are aware that you are what they may call a vulnerable customer so will give you a bit extra time and support
Dealing with all this is never easy but good on you for taking it a bit at a time .Brain fog is hard to manage at the best of times so hopefully you are being as kind to yourself as possible
Thinking of you Best wishes
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Sending love and hugs to all of you who need it.
I have let my utilities know im a vulnerable customer. I find that the advisors are helpful and will take their time and I ask them to email me anything I need to know.
Also add someone that can speak for you
I have my brother
Once your listed as a vulnerable customer
The company that distributes your power eg Western power will make contact on what to do in an emergency
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Hi @2DB good idea to register yourself as a vulnerable utility customer, I have too.
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