13 years of watching and waiting: Now it seems... - CLL Support

CLL Support

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13 years of watching and waiting

Polfin
Polfin

Now it seems likely that, age 79, I am probably going to need some kind of treatment for CLL.  I am wonderng how disabling that will be: living alone with the responsibility to care for my two dogs, the cat, a tropical aquarium and garden pond makes any disruption to routine an added worry.  

40 Replies
oldestnewest

Welcome to the site Polfin. Has your Doctor/consultant told you that you are about to start treatment and if so what treatment has been suggested. Maybe if you feel able to tell us more we as a group may be able to help in terms of what effects you may suffer, if indeed any. Everyone is different.  Do you have any family who could help you or close friends if help is needed.

Best wishes are sent to you.

Sue

A fellow animal lover.

Polfin
Polfin in reply to wroxham-gb

Hi Sue

My appointment to discuss treatment is 17 May at the Royal Berkshire Hospital.  I don't know if they have CLL specialist.  I will post the outcome and hopefully i'll be able to learn a lot from the Community's experience.

I do not have family and my elderly friends are in a position to offer only limited help.

But saying that, I am off now with my two adorable Scotties, Quillin and Bruce, for an amble through the woods on a beaitiful Spring morning.  Thank you, Sue.

Polly

wroxham-gb
wroxham-gb in reply to Polfin

Lovely to hear back from you Polly. Enjoy your walk with your two dogs. Any time you need an answer, have a question or just feel a bit down or lonely and need a cyber chat this is the place to be. As Roger said above. On an aside I was born in Berkshire many years ago. Good luck for May 17th, 

But hope to hear from you before then. Keep us all posted.

Best wishes.

Sue

Polfin
Polfin in reply to wroxham-gb

Thank you, Sue.  I'll be in touch, often.

Polfin

Hello Polfin,

you've done well for a good long time. I trust the wait has not been too stressful. It's not like waiting for a new car or exotic holiday.

Our friend Wroxham has asked you some good questions - I won't add to to those.

Family and friends lifted me through the months of treatment and only, honestly, the last two cycles stretched me to my edge of endurance - I was 64 then (it was 2015). But I (well we) got through it all and now, 5 months on, I am beginning to feel the old self re-asserting over the chemo-self .

I found that having a bit of a focus helped me through - perhaps there is a friend who could help with the care of the dogs - but pets can be a great "therapy" and the show concern and love.

Here is a great place to "hang out" if that term is in your vocabulary. Support of all kinds is freely available; from the clever, medical stuff right through the spectrum to the ramblings of an old geezer like me.

Best wishes dear friend,

Roger

Good news Roger that the old self (your words) is reasserting itself after 5 months. I feel exactly the same and the feeling continues. Long may it continue.

Regards

Sue

Hi Roger

I m so pleased to read your positive post.  I am on the brink of my experience of treatment and  am reassured to know that my new found friends here will provide invaluable guidance and comfort.  For too long I have shyed away from facing the inevitable!

Hanging out is a favourtie pastime, Roger and I welcome the rantings of old geezers. After all, what am I but an old geezer-ess.

Polfin

Welcome Polfin

I think we all understand your anxiety at this time never easy facing treatment but when it becomes necessary we find the strength to cope with it. Harder when one is living alone, I so hope you have friends and neighbours who you may find are only too happy to lend a helping hand to look after your animal family.

Sue and Roger are right do come here to vent, whether you are sad, or happy, and know that as best we can, we will be here for you so you don't feel so alone.

Have you been watching and waiting for a long time, perhaps like us all hoping the day of needing treatment would never really happen?  Try to focus on how great you will feel when it is over and the debilitating symptoms are behind you, and you can take more pleasure in your pets.

Wishing you strength and a successful outcome.

Bubnjay1

Thank you, Bubnjay.  I know you are right but it is still a little scary.  After 13 years of watching and waiting my haemotologist has said that probably treatment will be necessary in the 'near future'.  And, of course, coping is the only option.  It will be a comfort to me to have the support of the CLL community via the Association.  

Kindest regards

Polfin

My husband had his first treatment of  chemo at age 64 and his second at age 69. On neither occasion did he suffer any side affects, including sickness or loss of hair and continued to live his normal life style.

At 79 your consultant may start you on one of the more gentler treatments with fewer side effects.

And when a particular treatment is suggested to you, do let us know - perhaps we can offer more informed advice. Most of us are not medically trained but we can offer experience of living with cll, pre and post treatment.

Do also let your doctor know about your situation. He needs to be aware of your home-life in order to be more sensitive when considering which treatment options are appropriate.

I'm not sure where you live but perhaps there are reputable agencies that can help support folk like yourself - and dog walkers can be hired for a reasonable charge.

Otherwise, if anyone in your neighbourhood has teenage children, they may be pleased to assist for some extra "pocket money".

Keep in touch in you feel able to.

Polfin
Polfin in reply to fieldmeadow

Oh, I will stay in touch Fieldmeadow (what a super pen name) now that I have found such a supportive and caring Community.  I live near Wokingham in Berkshire and there are many good, professional dog walkers that can be relied on.  I won't despair as I am sure there is help out there if and when the time comes.

Thank you for your positive suggestions.

Polfin

Thank you, Beamend.  Your post gives me hope that I will do as well as your husband.  I trust he is continuing with his normal lifestyle and send him my best wishes. 

Polfin

There are two pets & owners charities that may be able to help out:

The Cinnamon Trust on 01736 757900,  &

People and Pets Advocates on 0300 666399

Possibly, if they cannot help directly, they will be able to tell you of other groups/services which can.

Good luck with the consultant, the hospital visit and anything else that may follow. 

Polfin
Polfin in reply to G1llHa1n

Thankyou, G1llHa1n

I've noted both numbers.  While I have not heard of People & Pets Advocates I know of Cinnamon and their well thought of helpers in my area.  Thank you.

Thank you, too, for your best wishes.  Whatever the future, maybe it is not going to be as difficult as I feared.

Kindest regards

Polly

Hi Polfin,

I'm so happy you found this forum. Everyone here has such warm and caring advice. My Cyber family understands things that my loving family can't possibly understand. We are in the CLL battle together.

I have two yellow labs that gave me so much comfort during treatment. They seemed to understand days when I wasn't up for the long walks and would lie on the floor next to me. Dogs are brilliant. They are my loyal companions and are up for adventure when I am feeling up to it. I'm sure yours will also. Best of luck.

Sally

Sally

It's lovely to hear that your loving doggos understood when their walks were cut short or even abandoned.   My Scottish Terriers are my family and listen patiently to my feeble explanations for not doing what they expect so I am now more sure that we will come through this OK, together.

I have a lot to thank my new Community friends for.  Kindest regards

Polly

If you are put on Ibrutinib nothing in your daily list of chores will change , mine didn't!

I was fatigued for a while but still got the "honey do list" completed, then took a long nap.

Polfin
Polfin in reply to fish61

This gives me something to hope for, Fish61.  I guess I can even discuss the option of Ibrutinib with my doctor, although I realise there are no guarantees it will be so friendly to me.  Worth discussing, though.

Thank you.

Polly

Hi Polfin

You have some excellent suggestions and information above.  It is hard not having close support but if needed asking for support has empowering and surprisingly human outcomes.

Keep in touch with CLLSA and together answers may well be found.

In the meantime all the best and take care of yourself and your cherished animals and home. 

Seven6

Polfin
Polfin in reply to Seven6

I have, haven't I!  For the first time since diagnosis I have felt able to speak of my worries and the caring responses from CLLSA members have uplifted my spirits.

I am really grateful for your best wishes, Seven6 and I will stay in touch.

Polly

Hi Polly 

Welcome to this amazing forum. You will find here people with so much knowledge but most of all friendship .

If you do have to have treatment I myself am on Ibrutinib as a first line treatment .

It is working well for me and apart from a few side effects in the early days things do settle down over time .

I love little dogs and particularly terriers .

We lost our much loved Yourkshire terrier three weeks ago and both my husband and I said that we wouldn't get another as its so upsetting when you lose them .

He would have been 17 this year so a grand  old man .

We have our daughters Havanese puppy two days a week so this is helping but I think already we are changing our minds about not having another dog .

We used to have a cat also who outlived two dogs .

The cat and dog we had at the time used to sleep in the same basket and when the cat died (who was 22 ) the dog had a heart attack the next day .They say animals don't know .They certainly do in my book .

Please let us know how things go and remember ask anything you are unsure about as you will find there will always be so many people who will listen and help if they can .

Take cars 

Brenda 🐶🐈

PE1234
PE1234 in reply to PE1234

Sorry Polly 

I meant to say take care not take cars .Sometimes my fingers do the walking and not my feet .

Polfin
Polfin in reply to PE1234

It is an amazing forum, Brenda.  For 13 years CLL has been my secret together with my worries.  Now that my biggest concern has been shared with CLLSA I am hearing from caring and - as you say- knowledgeable people who are offering the emotional support I desperately need.  

It is so good to know that the first line treatment offered to you is not so bad to adjust to.  My best wishes for your continued progress.

I know the heart ache at the loss of a beloved pet and even though your little Yorkie was a grand old man, it doesn't come easier with age.  Your pusscat was exceptional, living to 22 years and I am in no doubt that her closest doggie friend died of a broken heart.  Animals grieve for the loss of a companion.  My Scottish terriers are 11 on the 20 April and our pusscat, 12.  I just hope and pray that I outlive them because the sadness I will feel at their loss will not compare to the upheaval brought into their lives should I not.

I do so hope that you and your husband rember the very good times shared throughout the life of your little terrier and decide to give all that love to another little soul out there waiting for a forever home.

Take cars to you too!!  And thank you Brenda.  We'll talk again no doubt.

Polly

hi Polly

My husband has just finished his course of chemo for CLL and apart from an odd day of feeling slightly sick - cured by the tablets he was given - he has sailed through - just tired but that part of it.

If you are concerned about your pets - do you have a dogs trust near you - if so it may be worth your while to see if they can help you with the walking - they are a wonderful charity group and if you need to be hospitalised at any point they will help you . another charity organisation to contact is the Salvation Army - they can call round and help you with meals and possibly dog walking.  Don't be put off about them being a religious organisation - I not religious but have found them to be a great help - along with the Macmillan Trust.

Polfin
Polfin in reply to slyford

Thank you Slyford.  It really bucks me up to hear of someone 'sailing through' chemo.  If it comes to it, maybe I'll be as fortunate.  I do hope yor husband continues to progress well.

While I haven't a dog's trust neaby I do have a division of the Salvation Army, an organisation I hadn't thought might help.  Macmillan, of course, do magnificent work.

Kindest regards

Polly

slyford
slyford in reply to Polfin

Hi polly

You can alwaysask. My uncle is a retired major of the army and he has always said they are there for those in need and if they can't help they will try to find someone who can. Good luck with your treatment.  

Polfin
Polfin in reply to slyford

Thank you, Slyford.

I can't imagine more caring people than those that comprise the Salvation Army and will certainly reach out to them for any help I need as a consequence of this nasty, mean spirited disease.

I'll let you know the outcome of 17 May's appointment with haemotology's big guns at the Royal Berkshire Hospital.

Polly

Newdawn
NewdawnAdministrator

Hi Polfin, good to hear from you.

After such a long period of watching and waiting, it must come as a bit of a shock that it may be ending and I'm sorry that it hasn't been possible for you to dodge the chemical cocktail bar (unfortunately these 'cocktails' are served without cherries and little umbrellas!).

I hope that you can receive a gentler form of treatment and that it doesn't impact on your energy levels too severely. I can guarantee that it will be your beloved pets that will get you through the difficult times and it's amazing how they sense and adapt when we are ill. But please reach out to your local community for help if you need it or contact the agencies suggested. I appreciate that you are very independent but if you do struggle, ask the medical team to refer you to the hospital social worker for assistance. You may need additional help if your neutrophil levels drop low because you'll need to be careful what you eat and the jobs you undertake.

Even though we can't be there in person, be assured that the members will be here should you need support, advice and a cheery word. Wishing you well should the treatment be required soon.

Warm regards,

Newdawn 

Polfin
Polfin in reply to Newdawn

It was a shock, Newdawn, especially as the common symptoms that trigger the onset of treatment are very mild.  But the haemotologist who has been monitoring me at a local clinic has decided the time has come to refer me back to The Royal Berks as a candidate for treatment.  So 17 May will be an important day!

It's good to know of the hospital social worker and I  have been told of other agencies that will help.  Hearing from caring comunity members has given me a new sense of wellbeing and confidence that I will cope,  come what may.  My Scottie boys are easy going, tolerant little chaps and anything I want is OK  with them.  And the pusscat just requires a lap in which to sit, so she will pleased if I offer one that doesn't keep getting up and down!

All will be well.

Kindest regards

Polly

Newdawn
NewdawnAdministrator

Polly, I'm sure you trust your specialist implicitly but be absolutely sure this treatment is necessary for you especially if your presenting symptoms as as mild as you say. Ask for the rationale behind the need and don't be afraid to ask for a second opinion if necessary. I'm only suggesting this because treatment can be tough at any age and I'd personally need to feel very sure at 79 that there were no safe alternatives. Naturally I don't know why your doctors are suggesting this now and there may very well be persuasive medical reasons. But you need to know what they are and be psychologically and medically ready for them.

I hope you don't mind me making those observations.

I'm sure all will be well. You sound to be a lovely lady.

Newdawn 

Polfin
Polfin in reply to Newdawn

Thank you for your insight, Newdawn.  it is very welcome. Considering the number of times I have sat with my haemotologist while he reviewed my blood results, I am lamentably ignorant of what is going on.   I've probably been too passive and my acceptance of the inevitable has probably given him the impression that it best to tell me as little as possible while frightening me every now and again with the mention of chemotherapy.  Now, having been referred back to the hospital's main haemo clinic I will start out asking the questions necessary to form a considered opinion.  

Somehow, trust hasn't figured in these relationships: the consequence, perhaps, of perfunctory meetings with little or no effort to go beyond an impersonal contact.  I guess that is the norm.  It is easy to lose your personality in the vast NHS order of things.

But I will remember your good advice and proceed with care. 

Thank you, Newdawn

Polly

Good news - my hubby in remission!!!!!!!!!

now we have to revert back to the clinic for monthly blood tests and are going on cruise to rest recuperated and CELEBRATE!!!

there is hope after all

regards

Sandra

wroxham-gb
wroxham-gb in reply to slyford

Really good news Sandra for yourself and hubby. Enjoy your cruise you both deserve it. 

Take care.

Sue

Thanks Sue - shows there is hope and we are going to just chill and relax after the last 6 months of intensive treatment (and have a few glasses of wine!!)

Will let you know how it went.  Take care and speak soon

Sandra

wroxham-gb
wroxham-gb in reply to slyford

Sandra, 

Lovely to hear back. Not to put a damper on things , enjoy but just take care.

Not sure what treatment your hubby had but it pays to be careful, ie around people, food hygiene etc Im

I'm sure you are aware. Enjoy?

Sorry reply went funny, anyone else suffering as well or is it just me.

Sue

Yes Sue, we are still being very cautious as I know from reading various posts that the treatment he had will stay in his blood for several months and he is still prone to infections etc.  Still following all the usual hygiene protocols and we will be especially careful on the cruise.  We have notified them of Mike's condition and will talk to them again once on board to ensure we can be as "safe" as possible from "other people and their virus".  I think I am more protective of him than he likes but I may be more aware of the risks then him.  Thank you for caring.

PaulaS
PaulaSVolunteer

Hi Polly, 

I'm glad you found this site.  I'd like to add my welcome to everyone else's.  

I've been reading the responses to your post, and it's been good to see how understanding people are, about your cat and dogs.  Having also had dogs most of my life, and an occasional temporary cat, I can echo what they say. 

I've also had a tropical aquarium, and we still have a garden pond (which is full of tadpoles at the moment, which the goldfish are pursuing and eating with great enthusiasm).  The pond mostly looks after itself, though we do feed the goldfish, which gives the tadpoles a better chance of survival! 

I'm afraid I felt I had to give the tropical fishtank away though, as carrying big buckets of water for the partial water changes, and other tank maintenance jobs, became too much for me.  I had energy to walk the dogs for much longer than I had energy to clean that fish tank.   I do miss that tank though, and its inhabitants.  Not so many people seem to keep tropical fish these days. Whenever I visit a pet shop, I love to look at the fish department and remember...   I hope you manage to keep your tank in spite of possible treatments... 

wishing you well, 

Paula

Polfin
Polfin in reply to PaulaS

Lovely to hear from you, Paula and thank you for taking the time to post. You obviously understand my worries, having experienced the heavy lifting associated with pond and aquarium maintenance.  I do these things myself, as I live alone. I  can't bear the thought of having to give my tropical fishes away,  but if needs must...

I guess when choices have to be made ability to cope determines the outcome.

I have such a close bond with my two Scotties that they seem very happy to simply be 'around' and make few demands. Pusscat, of course, marches to her own drum.

I, too, am so glad I found this site.  With the help of the Community I am facing the future with a little more confidence.

All good wishes for your continued well being, Paula.

Polly

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