Hello all, my husband 48 has just been diagnosed with Waldenstroms
He was diagnosed last Wednesday and has since had 2 plasma exchanges and 2 doses of bendamustine. His blood was so thick it needed immediate treatment.
He is feeling okay atm and will have more chemo next month…
Just here to touch base and say hi…
3 Likes
Hi @Heatherjane
Firstly welcome to the forum and thank you for posting
Sorry to hear about your husbands diagnosis, im sure it must have been a shock but good to hear it’s been acted upon almost immediately and it’s even better to hear that your husband is doing and feeling well after the initial action
There is plenty of information and support on the blood cancer website that can support him and you and the folks on the support line are amazing and so knowledgeable should you need someone to talk to.
Equally I’m sure it won’t be long for others affected by Waldenstroms and/or those who’s had bendamustine to join the chat and share their support, advice and experiences that hopefully will help you both.
3 Likes
Here are some posts that may help
https://forum.bloodcancer.org.uk/tag/waldenstroms-macroglobulinemia
3 Likes
Hi @Heatherjane and thanks so much for touching base.
@Rammie18 has given you a brilliant response already.
I know it took me a long while to come to terms with my diagnosis with another blood cancer.
Give yourselves time and you might both deal with his diagnosis shock in different ways, there is no right or wrong.
Really look after yourselves and keep posing and touching base.
3 Likes
Hello @Erica and @Rammie18
Yes it’s been a shock for us. It all started off last year with bleeding gums. Followed by fatigue, then dizzy convulsion spells.
He then got a cold in February that he couldn’t shift along with nose bleeds that went for hours. It was a this point I persuaded him to go to the doctor.
They did numerous blood tests and had problems in drawing blood because it was so slow and it congealing before it got to the lab. The blood tests showed anaemia and lots of other abnormal readings… after even more gp visits where we reported he was having visions issues and the said for him to see optician. Finally one of the doctors took it all seriously and sent him to A and E. The doctor at A and E said the gp showed be diagnosing this and Ian felt very dejected. Later that day a different doctor saw him and referred him to the same day emergency care department who realised something was really array.
So 6 weeks later we get the diagnosis and treatment has been rapid….
What a journey…
X
3 Likes
Yes, quite a whirlwind @Heatherjane,
It is so difficult with very generic symptoms to often get a diagnosis
Often people ask about the patient but how are you doing @Heatherjane ?
It is not easy being the spouse, it can feel a very isolated, lonely place.
I have the blood cancer. but in another situation I have been the spouse.
Look after yourself as well as you look after your husband.
2 Likes
Hello all,
I am feeling really sad for my husband. He is truly suffering. Itching, insomnia all of which I have consulted his team but nothing effective has been done.
His chemo has been halted due to his liver going beserk. He had a liver biopsy and mri scan last week which we are awaiting the results for.
I feel really angry at the injustice of all this and cant believe what is happening to us.
We have also put in a claim for our critical illness insurance and I am so worried it won’t pay out. I have fought so many battles over the past year with other un cancer related issues and just can’t face another if they don’t pay out.
Yours angrily!
Heather..
3 Likes
Oh @Heatherjane it is true life is not fair, but as my son often says ‘it is what it is’
Our forum is the one place that I have found that I can honestly say how it is for me.
I also finds it sort of helps me to just write/type how it really feels to be me.
I have found fighting battles is absolutely, completely exhausting.
The Blood Cancer UK support line is there for you on 0808 2080 888
Perhaps the main thing is that you look after each other and look after yourself as well as you look after your husband @Heatherjane
Please do keep posting.
1 Like
Dear @Heatherjane,
I am sorry to read what you are going through! It sounds like your husband is really suffering with his symptoms, please do persist with telling the team how things are. I have attached our pages on itching as there may be some recommendations you can take to team depending what has already been trialled - Itching | Blood Cancer UK.
I just wanted to echo what Erica has said, we are very much hear for you if you wish to talk, our support line is open and you can reach us on 0808 2080 888.
Take care of each other,
Heidi J (Support Services Nurse)
4 Likes