Today we are relaxing after a lovely Xmas eve with the neighbours and Christmas Day with the family. We have reminisced, quizzed, gamed, eat far too much, and laughed. How I have missed the laughter it really is so healing. I do hope you all had an enjoyable Christmas too. It is a sobering thought, yes I did have mulled wine, Sherry and Baileys, that tomorrow am off to hospital for a swab test and the next day for the joy of a venesection. A grand finale to this rotten year. Hopefully this will thin my blood where Hydroxycarbamide, aspirin and apixaban have failed. I am weary of muscles in my calves, hips and ribs painfully cramping and feeling so, so tired. However the sun is shining, the music on ClassicFM if divine, one day at a time is my way of coping with my poor old body. How do you all cope? Marylin
Oh @Marylin you have warmed the cockles of my heart.
I am very aware that Christmas is such a difficult time for so many, exacerbated even more by Covid times, but I have to say we had a me and him Christmas Day and had a lovely day.
Him made a real effort to be sociable and was thoughtful and, although not with family, I felt it was one of my best festive days ever.
My sister sent a parcel for the first time in 35+ yrs (it was stopped at her instigation).
The last time we saw her 3 yrs ago she brought me a wooly hat and scarf.
This time it was a brown paper parcel absolutely covered in brown sticky tape with the address covering the whole parcel. Inside was a similar addressed parcel and inside that the same ???
Inside were 2 wooly hats, a pair of wooly gloves and scarf, we did laugh.
We also had this absolutely mound of wrapping to dispose of.
Quackers, that made the ultimate sacrifice, plus usual trimmings and was yummy.
Plus the smoked salmon and cream cheese starter and Christmas pud, custard and ice cream.
I overindulged on the Lindt choccies and we both watched what we wanted on separate TV’s.
Yes, the anxieties, fears, aches and pains went out the window yesterday, I had a bubbly bath this morning and I hope to keep more serene as a New Years Resolution.
Erica glad you had a laugh at Christmas too.
My nightmare year continues, this week my husband was taken to A and E courtesy of 111, after two nights in hospital was diagnosed with diverticulitis and a heart problem, I journied to the same hospital on the same day for my venesection. As usual my notes had not been updated and had quite a delay until they tracked them down, also it was a rather painful procedure. Next day went down with sickness and diarrhoea. Three days later went for an ultrasound on my poor tender abdomen, another at her painful process. That afternoon had telephone consultation with Hepatobiliary surgeon who asked if I was fit enough to have an operation on my gall stones. How would I know, I feel rough most of the time? Husband now home but rather frail. We haven’t done much laughing these last few days. Let’s hope we all have a healthier new year.
Oh @Marylin your nightmare year does continue.
In October my husband was sent straight to A & E by his GP and was kept in for a week and diagnosed with a weakened left ventricle and bowel problems,
He came out as I had my head op for reoccurring skin cancer.
He is having ongoing tests including an angiogram next week.
My head wound won’t heal and it is GP nurses appointments to have it dressed from daily till twice weekly now.
What a pair we make although I know my experiences are nothing to yours.
We are so lucky to have our NHS and the caring staff.
I think a healthier new year sounds good to me.
Hi @Marylin. How is everybody doing?
Things are not so good at the moment. Bill has just been diagnosed with Heart Failure, he has been in hospital twice since Christmas. We are now waiting for the Heart Failure Community team to contact us. He hates illness.
My venesection was not as successful as they hoped, my blood still too thick putting me at risk from clots. They have upped my Hydroxycarbamide dosage, which increases the eternal fatigue.
How are you doing? I do admire you for listening to all our woes. Not the best start to 2022, still the sun shone yesterday which was lovely. Marylin
Gosh @Marylin I’m so sorry to hear what you and Bill have been going through. Wishing you both all the very best - our support line is only a phone call or an email away if there’s anything we can do to support you so do just give us a shout.
Oh @Marylin, please always post what is really going on for you, it is so important that you have a place like our forum to really say it as it is.
I am so sorry to hear what has been going on for both of you.
I also have a husband who does not like being ill and gets very introverted and difficult to talk too. He was also diagnosed with heart failure (+ atrial fibrillation and a weakened left ventricle) in November and luckily he has only been in hospital once. Do you know I think it is those words ‘heart Failure’ that are so, so scary. and that is what the BHF booklet is called too. Multiple test of course.
Also your venesection was not successful I hope raising your medication dosage helps.
I find anxiety and stress makes me fatigued and you have got your medication on top of that.
We are always here for you both as is the Blood Cancer UK support line.
It was really cold and misty this morning but the sun and blue sky have popped through now and it is a beautiful day.
Be kind to yourselves and please keep posting
Hi @Marylin. That’s so much going on for you and your husband. Exhaustion is so hard isn’t it and just makes everything 100 times worse doesn’t it! Even though things are tough I hope you are being kind to yourself?
I’m ok thanks. Always exhausted when I go back to work after the Christmas break. Can’t wait for the light set mornings!
I love this forum and listening to people. We all need each other X
It will never be a problem to listen to yours or anyone else’s woes on here @Marylin , that’s what it’s for. We’ve all got those woes and everyone supports everyone else. It sounds like a lousy Christmas and New Year. I do hope you get some well-deserved good luck soon.
I don’t have much to laugh about at the moment. Hence the following list of woes.
Had a letter from the hospital last week say that a lot of the conditions detailed on his hospital discharge forms belonged to a different patient. I have asked for a correct version to be sent but as yet am still waiting. My husband has improved but not sseen a doctor or nurse face to face since his discharge. I am not over impressed with Community Heart team. I seem to be the main carer with little input from the rest of the team.
I have not been feeling too good, not sure what is wrong, an accumulation of aching, cramping muscles, painful toes, ankles knees and hips, extreme fatigue and a great reluctance to venture outside the home. Just thinking about going out is so exhausting. I have had 4th jab. It took three quarters of a hour of deliberations despite my having the necessary letter from haematology before they would give it to me. The nurse told me it had been decided that they would do me more harm by not giving to me than giving me the booster. They kept asking me when my chemo cycle began and ended. I kep telling them that it was a continuous treatment that had no foreseeable end date.
The news of the Russian invasion of Ukraine does not help one’s mood, we did manage to fill up with diesel as my husbands has two hospital trips next week. It is an hour journey to drive to our hospital so fuel is very necessary. Goodness knows what the price will be in the future apparently most of our diesel comes from Russia.
Age U.K. finally got in touch and have re applied for attendance allowance for me, another tick on my to do list. Just have to get a GP to ring me have been trying to get a telephone appointment to discuss my husbands medication for over a week but the appointments are all gone by the time I get through, so stressful
On a happier note, the grass is green, the crocus are mauve, and the daffodils are dancing, spring is coming! Marylin
Hi @Marylin I think you are entitled to feel stressful and perhaps the doctors appointment might be in order for you to discuss all your symptoms.
All our GP and nurse appointment requests have to be done on line now. Then someone responds on line or by phone.
I am glad that Age UK have been so helpful, I do like to tick things off my never ending ‘To Do’ list.
Yes, spring is springing and with the rain and sunshine we have been having I can actually see the spring flowers growing by the day with their vibrant colours.
nature is wonderful and free.
A handy hint from me is to not have the media on more than needed.
I hope that you get your GP appointments soon, unfortunately it often takes stress and persistence.
Look after yourselves