Hairy cell leukaemia

Great news Wendy, congrats, enjoy it all.... sleepless nights or not!

Hi

Well I'm new to this having just been diagnosed over the last few weeks. I seem to have been caught early as this was spotted in a routine blood test and I had no idea that I was ill. I'm heading for 5 consecutive days of a cladribine injection in early July and I'd be interested to know how anyone else got on with this. Also, as we have a dog which is very much a part of the family and roams the entire house - do I need to take extra precautions?

I'm also searching to see if macmillan offers legal advice/help as I was only 5 weeks into a new job when this was discovered and last Wednesday (9 weeks in), the day after my CT scan my employer told me the job was ending, I wa spaid up to Friday and that's it! This is a very small business (a garage offering a mix of car servicing and performance upgrades). The boss has back issues and has decided that he is going to run the office meaning I'm out. I was monthly paid and there were no issues raised prior to this.

Any advice would be appreciated as we've not much income until benefits are sorted, as my wife only has a part-time job. I now have a sickness certificate for 3 months from my doctor so I'm getting on with contacting everyone but it all seems so hard (and I thought benefits were easy to get!).

Thanks

Mark

Hi Mark,

Welcome to the club... that none of us really want to belong to.

I was diagnosed with hairy cell leukaemia and treated with cladribine 10 years ago. As chemo goes, cladribine appears to be on the mild side and it is certainly highly effective at controlling HCL.

Most people find the first few months are the toughest, with all the emotional upheaval of coming to temrs with what you probably consider a life-threatening illness, but be reassured, as the consultants say, if you're going to get leukaemia, HCL is the one to get because the treatment is so sucessfull.

After the chemo and a few months on septrin to help keep any infections at bay, I've not been on any medication for 10 years... and you can carry on with pretty well all normal life activities.

Hi there Mark

Sorry to hear youve joined the club, but you know the range of treatments and ability to retreat, plus the cracking periods of remission, its one of the best of a bad bunch!

Ive had treatment 3 times and the most successful was as yours is - 5 days gets it over. You will feel shattered, you will be tired and lethargic. My advice it to be deligent about germs. Get you family aware of staying away with a cold and washing hands diligently. I made it last time with only one infection as was really over cautios. Regarding your dog, He sounds like a family member and you need love and support around you. However I would try to avoid touching him - wash your hands if you do. I saw my sister's dog but kept a distance and she always wshed up before being close to me. You see the chemo will bring your immune system right down and being pedantic for a few weeks will be better than ill for several.

Regarding financial and work support please call the Macmillan Support line. There are 2 teams who will be able to help.  The welfare rights team will support you through identifying what income you can claim and helping with those applications.  I think they will help with advice re work - but maybe its the second team i'm about to mention. But what they could help with is a grant - ask and they will explain what it could cover.  The second team is the financial guidance team - they'll help with info on mortgages etc.  I got my whole endowment plan paid off as I had a sickness cover I did not even know I had!  They may have guidance on work as frankly your ex boss sounds like he's on shaky ground!  I wonder if your hospital has an information centre as they could help too.

Get to know other things like you get free prescriptions - your GP surgery will have forms. You'll likely get a pass for free parking at the hospital. Every penny counts at the moment.

The support line is 0808 808 00 00 and can also offer clincial advice - why not ask about the dog and emotional support too.

Good luck Mark and please keep in touch

take care, Wendy x

HI Mark - I had the 5 day cladribine in Nov 2012 and only wanted to add about the dog bit as everyone has given sensible advice! I asked the consultant who said it was fine to keep him with me as I thought I might have to send him away. 

I had to go to the mainland for treatment and stay there for 10 days. When I returned our bearded collie (very hairy for germ attraction!)  was very cautious about me - I obviously smelt very weird to him and he wouldn't lick me (very handy in germ control!). He soon got back to his normal boisterous self. I gave him lots of cuddles and continued to brush him every week but made sure I washed my hands every time I cuddled him and I used hand gel a lot. I also made sure I never touched my face after touching him before I got to the sink first! Top tip invest in LOTS of handcream as your skin will get very sore with all the washing (I may have been a bit OCD but didn't catch anything!)

The plus sides of dog ownership far outweighed the negatives. I had to stay out of contact for people for several months and the dog was my constant companion without whom I would have gone mad. He also made me go for walks every day even if I could only manage a short distance and it did me good to measure my progress as how far I walked that week. 

I was very tired after the treatment and I"m still very weary now I'm back at work and very fuzzy headed still so try and go easy on yourself and not have too high expectations of being well immediately. Everyone is different though but for me it's taking a long time. 

I wish you the very best with the treatment - I didn't feel a thing with the injections and made sure I took my antinausea pills at the correct intervals - I was only sick once. Worst bit was waiting 5 hours every day for the injections which took 5 minutes!!

Any questions I can help with please do ask!

Trish 

Hi Mark

Just a message to say best wishes with the cladribine (you mentioned early July) - i'm sure you'll do really well, just wanted to wish you well!!

I found support on here really helpful - please come back for support or just to say how you're getting on.

take care

Wendy x

Hi Y'all.

Had my 4 monthly review recently. The haemotologist said my blood results had improved even more. Unfortunately my body doesn't know that I'm perfectly well now. Still got the cold symptoms (two and a half years now) The pains in my shoulder and hips have virtually gone but have started in my rear pelvis - after 4 hours of sleep, I wake up with a dull burning ache in my left pelvis and a blocked nose. The latter has made my throat dry but my nose won't clear so I try to sleep while breathing through my mouth. This dries my mouth and so the cycle continues.

So I have no energy to do anything still. After half an hour of weeding, vacuuming or scraping off old wallpaper, I have to have a rest. Had to drive 5 miles to a dentist to remove a broken tooth last week. Was worried I wouldn't be able to concentrate on driving that long.

By the way, my local hospital is Medway Maritime. In the news at the moment.  3rd slowest A & E  nationally, junior doctors amking decisions outside their abilities, 232 more deaths last year than expected etc. Maybe they're planning to take me in and finsih me off!

But the haemotologist's report still says "The patient feels well in himself" ?*!%*&!$*! (censored)

Hope everyone else is doing okay.

Chris

Hi Chris,

Good hearing from you again..... yes, you gotta worry whenever you go within 5 miles of a hospital these days, the stuff about excess mortality rates is shocking. Maybe what's worse is it seems to have been going on for years and nobody gave a toss about it, management just buried the figures (along with the bodies...)

You know that most people who drown are good swimmers? That apparently is true... well, the rest of us stay away from water, apart from the occasional bath!  Best stay away from hospitals too it seems....

Yes, it's been tricky sleeping in this heatwave... windows open to try to get a breath of fresh air.... Tossing and Turning (remember the old Ivy League hit? Hey, I saw them live twice)

A relief in a way to put my jeans on today as it's cooled off... not had any trousers on for a whole week.... dunno what the neighbours think about that, but...

Hope the broken tooth is ok!

Hi Frank

Thanks for the cheery word. It seems that when I lay down flat my nose blocks and the cararrh gets onto my chest. Last night I rested my head on 4 pillows and that eased the problem a bit,

I don't know if I've told you this before but it's worth repeating. It was reported 2 or 3 years ago in our local paper that Medway Hospital had lost one of its patients - literally and metaphorically.. A "nurse" reported at 10 pm that she hadn't seen a patient (in his bed) since 8pm. He'd have been in his pyjamas and his wheelchair was missing. Midnight they tell security. 2am they phone the police. 7am the man is found - dead in the toilets. The nurses never thought of looking in there because the man was supposed to be accompanied to the toilet by a "nurse".

Let me guess what happened. "Nurse, I need to use the toilet" - "You'll have to wait. I'm busy!" - "Nurse, I'm bursting now" - "And I'm still busy" - "Sod it. I'll have to go by myself!".

And despite the fact that 1 in 3 people will become cancer victims, Medway Hospital don't have an oncologist. They have a monthly meeting of all specialists to discuss their  cancer patients so they can check if anyone of them has the faintest clue what to do. I wonder what the pass mark is in a doctor or specialist's exam. 50% maybe?

Ah well, won't be long now before the aliens take over the world. (UFOs are being seen regularly now.) So I hope they know more about hospital management than the present lot.

A fond farewell to you all

Chris