Hi, my partner was diagnosed with Chronic lymphocytic leukaemia (CLL) in June, it is early so at the watch and wait stage but i am struggling with my emotions regarding this. I am sure what i am.feelingnis normal but feel like not many people will understand. My friends and colleagues have offered support but i am still struggling.
My partner had been having problems swallowing for some time and after a struggle he agreed to apeak to a gp and as part of the process he needed bloods for the suspected cancer referral. The blood came back abnormal but the GP decided they didnāt need to speak to him for a number of weeks so because my background is Haematology my partner had the results sent ro him even though the GP hadnāt spoken to him. He got me to look at the results and immediately i knew what was wrong and i ended up being the one telling him the likely diagnosis and explain the disease. To make it worse, his GP had decided to ignore the advice to refer to Haematology and commented to wait until the outcome of the other referral. Fortunately i now work in primary care and so was able to get him registered and referred within 24 hours. It was decided by his new GP that a CT scan was needed and they lymphoma needed to be excluded, thankfully within 2 weeks the CT scan was done and we had the first appointment with the consultant haematologist. He also agreed it was very likely it was Chronic lymphocytic leukaemia (CLL) but wanted to exclude lymphoma too. Thankfully 3 weeks later the additional bloods and CT showed it was Chronic lymphocytic leukaemia (CLL) and the swallowing was confirmed as severe oesophagitis and a already known hernia so having gone from possibly having a cancer of the throat (my uncle died of this aged 59)and or lymphoma and or Chronic lymphocytic leukaemia (CLL) it was just Chronic lymphocytic leukaemia (CLL).
The reason i am struggling is my partner is 58, so youngish for Chronic lymphocytic leukaemia (CLL). He has already had a lot of minor infections in last 9 months and is really fatigued. At times, he says there is nothing wrong, but to be fair the consultant said carry on as normal. In my many years experience in Haematology and primary care, most patients with Chronic lymphocytic leukaemia (CLL) are much older and many we looked after tended not to survive much past 10 years. I know there is a 33% chance he wonāt need treatment but i feel he is already experiencing symptoms so find it hard to think positively. My friends that still work in Haematology, also agree that his lower age is less common so we canāt really relate him to any patients we have treated.
We have another appointment in November and bloods before the appointment for more genetics to help inform prognosis and treatment options.
Sorry for the ramble and i know i am not the one with the problem, although ironically, i was investigated for polycythemia last year, thankfully genetics said no. I just feel emotionally a wreck. I canāt really talk to my partner as i am trying to look after him and keep him positive and donāt want him to worry due to my inability to be more positive. He is lucky he has a fantastic consultant and haemato-oncology nursing team and i donāt feel i have the right to lean on them too. Has anyone else felt like this at all? Any pearls of wisdom?
A great big welcome @Jujuju99 and all I can say is that I was diagnosed with Chronic lymphocytic leukaemia (CLL) at 53 yrs old, 18 years ago and I am still on watch and wait, yes, I still have fatigue etc but I have learnt to manage it with my lifestyle and had my best birthday ever on my 70th.
The main thing is that your partner has a fantastic consultant.
Your feelings are so natural and your knowledge can be a double edged sword.
If you would like to speak to to someone the Blood Cancer UK support line is there for you and please keep posting and be kind to yourself.
Look after yourselves be kind to yourselves and have fun together
Hi Jujuju99
I was diagnosed with Chronic lymphocytic leukaemia (CLL) in Aug 2017, picked up on a routine blood test. Looking at my GP records, I probably started with it in Jan 2015 (age 57) & had been on watch & wait until April 2021. My haematologist decided to start me on treatment in April 2021, 6 months of obintuzumab (given by intro drip at the hospital day unit) & 12 months of Venetoclax (given in tablet form). I finished my treatment (targeted chemo) in April 2022 and I no longer have Chronic lymphocytic leukaemia (CLL) in my blood. I have regular blood checks every 3 months at the moment.
When I was first diagnosed my husband was more upset than I was (heās more sensitive than me). I was upset that weekend and I thought to myself Iāve always been a very positive person and thereās no reason to stop being now ! If Iām sorry for myself & miserable, Iāll make my husband, children and grandchildren miserable and upset too ! The haematologist did say to me that if there was ever a type of leukaemia (if ever) to get it was Chronic lymphocytic leukaemia (CLL) as it was a very slow developing. I was very honest and open with my children and grandchildren. The grandchildren are age 9, 8 & 7 now, and they would ask me questions and I would answer them as honestly and reassuringly as I could, they seamed happy with that.
We all have different ways of dealing with difficult situations, and your current feelings are very normal. Itās often more difficult for husbands, wives and partners of the patient, feeling you canāt help your loved one.
Sit down and talk to each other about your feelings of anxiety, as youāll both be feeling a similar way. Then you can fully support each other along the road moving forward.
If you wish to ask me any questions, please do so and Iāll respond as honestly as I can.
Best wishes and stay as positive as you can.
Dusty
Thank you for your replies, i am sure once he has a few more bloods i will feel better about it all. The consultant did say the he is lucky he has me so i can keep an eye on things and know about the disease so can help him. I think because in the previous 8 years he has only been ill maybe once or twice, 4 episodes in 9 months is a lot for anyone.
Hi @Jujuju99,
Welcome to the forum and thank you so much for taking the time to share this. We are here to support everyone affected by blood cancer and that certainly includes you as the partner of someone living with Chronic lymphocytic leukaemia (CLL). It sounds as though it has been an understandably tough time for you and your family, and itās certainly normal to struggle at times like this. I can see that youāve received supportive replies from our community on here, so do keep reaching out for support, this is a safe space. Our Support Team are also here- we have a free and confidential support line- if you ever wish to talk anything through, please donāt hestitate to reach out to us (0808 2080 888). We can also talk you through accessing support for yourself such as counselling if you think thatād be helpful?
Best wishes,
Tanya.
Hi @Jujuju99 itās very easy to imagine the worst case scenario, especially when as in your case you have the expert knowledge of what can happen. I know that you will support your partner no matter what and be an invaluable help to him. You must look after yourself too as you are livjng this with him and need to make time for how you feel. Youāve already made contact with us here and with the Blood Cancer UK Support Team so make sure that you use us as an outlet for your feelings and worries which must be very real. I hope it turns out not to be the worst case scenario and that you are both able to live a relatively normal life as much as possible. Let us know how you get on.
Thank you, i already feel someone better from just posting
Hi @Jujuju99,
I am so pleased you have reached out and shared this with us all and i am glad you are feeling somewhat better just from your initial post.
Often knowing you have a safe space to have a conversation and debrief on all you have went through is so valuable, particularly if it is separate from your own work colleagues and family.
It sounds like you have just been the most amazing support for your partner and also a real factor behind why and when he was diagnosed! I hope he is feeling okay and coping with this no doubt, real shock diagnosis.
It is great to hear that you have confidence in his haem team moving forwards, but i completely understand what you mean about being a support for you. They would be delighted iām sure to help in any capacity they can but often when you yourself has clinical knowledge that relationship can be difficult to navigate.
So please do know we will always be here for both you and your partner and hopefully can in some ways offer a second family of support should you ever wish to talk things through.
As my colleague, Tanya has previously highlighted, we can be contacted via our helpline or indeed if you should ever like a call with myself or nurse advisor colleagues, we would only be too happy to arrange that.
Take Care, Lauran
Thank you so much that means a lot.
Hi there,
I was 50 when diagnosed in 2014 (and a woman, whereas Chronic lymphocytic leukaemia (CLL) is more common in men) and was on W&W until last month, when my bloods āfell off a cliffā! I am now 2 weeks into chemotherapy and have been told that 12 months treatment should buy me 2 to 3 more years, which is a good deal in my book. I have never been particularly phased by my Chronic lymphocytic leukaemia (CLL), except when shielding meant my life changed dramatically, losing my business and partner due to the restrictive way of living. However, I am very positive still and love the Mark Twain quote: āThe fear of death follows from the fear of life. A man who lives fully is prepared to die at any time.ā Iāve had the most amazing, adventurous life and my way of coping (as a bit of a control freak!) is by thinking that none of us know when weāre going to die, but I do know what I am going to die from!
I am sure that your husband will be a long time on W&W, like most of us are, so enjoy that period and make the most of it. Best wishes to you both.
Thank you for taking to time to message. I am sorry to hear that you lost so much during COVID restrictions and that you are now needing treatment whilst still so young. I know that working is a big part of my partners life but as he works in waste water, he may have to change if his immune system gets too weak. He doesnāt do sick!
He had his pneumonia jab and 4th covid jab this week so that is good as he hates needles and passed out when having his bloods done! But as the consultant said, he will have to get used to it.
Stay positive SpaceAngel and i hope your treatment goes well.
My Chronic lymphocytic leukaemia (CLL) journey to date is similar to Dustyās in that I was diagnosed at 58 after being very healthy all my life. 6 and half years later Iām 2 months into Obinutuzumab and Venetoclax. I got quite ill quite quickly just before treatment (youāll know when itās time), but I feel better already. So, looking back Iād do things a bit differently. Iād get on with enjoying life and not worry as much. Itās a different world now from when I was first diagnosed, and a lot of this is down to fabulous research by the brilliant people at Blood Cancer UK and others. Good luck x
Hi @Carolly any handy hindsight tips on how not to worry as much?
Also what do you do to enjoy your life?
Have you had to adapt your lifestyle because of any symptoms you might have had to live with?
I think my music and reading help me divert my thoughts and stop worrying as much.
I have reassessed my life and decided what and who are important to me.
Family and friends are priceless and the best things in life are free, like nature, rivers etc.
My fatigue means that I do not do evenings but I am a lady that lunches now. I have given up commitments that I do not enjoy.
I await hearing others thoughts too.
Be kind to yourself
Really good advice, we had already booked and paid for our second trip to the Caribbean in September before the diagnosis. I have suggested to my OH that next year we do two more of our long haul trips with our friends (Mexico and Canada) and then we plan to take trips nearer to home the following year.
Hi Erica, I think avoiding infections probably was my biggest adaptation, especially through Covid times. It certainly changed my views on travel overseas and Iāve holidayed in the UK since but am thinking of going abroad again when I finish my treatment. Also I wouldnāt spend so much time trying to figure it all out as if Iām honest it didnāt work out as I expected! But, when you need treatment, you get it. The team at my Cancer Centre have been brilliant. Iām looking forward to the future now.
Hello @Carolly,
Thank you for posting on the forum.
Itās good to hear you have begun Obin/Ven treatment. How are you feeling on this? Do you have any side effects?
Iām glad your Cancer Centre team are looking after you.
Stay well and I hope you can plan and enjoy some overseas travel once your treatment is completed.
Best Wishes,
Heidi.
Hi Heidi, I think itās fair to say that most (not all) people have a strong reaction to Obinutuzumab infusion when you start the regime but the staff are amazing and deal with it. They are strong drugs after all! The Venetoclax has been pretty much plain sailing but the 3 blood tests a week require a bit of staying power, especially if like me you are an hour away from the hospital! Even so I am very pleased with my progress to date. Carol x
Try to be positive as the outcome after treatment for Chronic lymphocytic leukaemia (CLL), if needed, is very good.
Iām an 87 year old male diagnosed about five years ago and in remission for three years after chemotherapy.
Yes, he needs to be very wary of getting any infection. Iāve had the air ambulance out to me twice to administer intravenous antibiotics from cuts on my fingers - they can turn nasty so quickly. And, sadly, the needles will have to become his friend, as thereās no escape! x
Hi @Jujuju99 I was 51 when diagnosed with Chronic lymphocytic leukaemia (CLL) and on watch and wait for 3 1/2 years. I know all of my family and friends were more worried and concerned about me than I was and I appreciated their concern, from my experience, how you are is pretty normal and shows you care.
Before I had treatment I was picking up coughs and colds from the office which always turned into pneumonia, the worst of which I ended up in hospital. Lockdown happened and no more pneumonia or other illness as I was working from home, I still had a bit of fatigue and it was always after meals, I couldnāt keep my eyes open. I do a bit of cycling and was always shattered after a ride and struggled with hills. I had treatment July- September 2021 and since then I no longer have the fatigue, have more energy and generally feel much better and my cycling has improved, I didnāt realise I was that unwell. Several people have said I look well but I didnāt think I looked ill so I must be better. I am surprised at your GPās attitude and how they left you to inform your partner. I hope everything goes well for your partner.