RCHOP -wigs

Hi Roxy123 let’s see if any group members are from your area

To widen your support base you may want to consider looking at.Lymphoma Action.

Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run various Support Platforms… Their Closed FB group alone has over 6200 members with a good number of folks from the Essex area.

They also have a great Buddy Service where you can be linked up with someone who has walked the same support/treatment journey.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support. 

Hi Roxy123,

I'm midway through R-CHOP at the moment, so just a few weeks ahead of you.  My hair went 3 weeks after my first treatment and it was messy.  I'd  had it cut from shoulder length to a short sharp bob when I knew I'd be back in chemo before Xmas.  My neighbours got used to me in short hair and it was almost the same style as my NHS wig.  I wanted to get it clippered all off when it started to fall, but my hairdresser was off sick and I didn't fancy a strange hairdresser in a festive salon for the job, so I stuck it out with hats and gaffer tape to gather up the mess.

My wig was free at the Maggie Centre.  You could contact your local Maggie Centre in Essex and find out when the wig fitter is there.  It was a good trying on session, I have been given a full wig care kit and the wig looks nice too.  Not especially comfy, so I revert to hats for informal wear.

As for Scotland, I don't know about Edinburgh or Glasgow, but there's an expert wigmaker in Perth whom I have met.  It's the deluxe end of the price range as she does bespoke human hair specials, about £2,000 a time. They are wonderfully comfortable, but I reckoned I'd be regrowing my own hair by the time I paid for the bank loan!  If you're a chemo patient, you don't pay the 20% VAT.  If I had a need for a permanent wig, I'd consider it, but not for 6 months or so. I'm sure there will be similar experts near to you or in London.

Good luck!

Cecren

Hi Roxy 123,

There's bound to be a good wig shop nearer than Perth, but there is an expert bespoke wigmaker there.  Beautiful work, but costly.  Expect to pay upwards of £2,000, but you won't be charged VAT as a chemo patient. I reckoned I'd have tolerable regrowth in 6-9 months post my R-CHOP.  I have an NHS wig, plus care kit, provided by my local Maggie's Centre.  You could find your nearby one and see when they have a wig fitter appointment.  It's all freeand there's a lot of choice.  Mine looks fine, but it's not very comfortable compared with the handmade ones.

There's a secondhand wig market via the Wigbanks - you will almost certainly have one closer to you than Scotland, but choice is limited.  The Chinese stuff on Ebay & Amazon  is dubious and I haven't tried it, but look for fringes on headbands - they help a lot with that 'boiled egg' look when you just want to wear a hat. 

I'm midway through my R-CHOP now.  I had my shoulder length hair cut to a short sharp bob before starting chemo to accustom the neighbours to the style of my NHS wig. The hair fall started about 15 days post first chemo and it was messy!   It's always traumatic for any woman, but I had mine clippered off and it's comfortable and I can wait for it to grow back evenly all over. 

Best wishes for a successful treatment and a happy solution to the wig search!

Cecren

Highlander 

Once again , thank you so much for your knowledgable support . Can anybody also let me know their experiences of having RCHOP ? 

thanks everyone xxx

Thanks so much for the useful information about Maggie centre , I’ll definitely look into that . How are you feeling? I wish you a speedy recovery x

Hi Roxy….. I had 6 cycles of R-CHOPs more aggressive big brother R-EPOCH and honestly I had no real issues with it.

My great CNS (Cancer Nurse Specialist) initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.

For me the Side Effects of Treatments were all do-able

My R-EPOCH had me in hospital 6 nights/5 days for each of my 6 cycles on my 2 IV pumps 24/7 for over 120hrs each treatment........ R-CHOP is nothing like this.

These are some of my simple tips.

Nausea may be a challenge, but remember you must not to suffer in silence as there are lots of tools available - but your team need to know how you are getting on as at times it is trial and error to get the right one.

I was only sick a few times during my 750+ hrs of main chemo and this was down to a bad food choice…… I just wanted some takeaway food….. believe me it’s not a good idea.

Cancer-related fatigue may well build up over time so you need to take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less you do the longer the recovery.

There are signs everywhere in my local Heamatology ward and clinic saying a week in bed is like ageing physically by 10 years….. and the recovery after this is much longer.

There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs.

But the effects of the chemo on growth areas and her general immune system will last for weeks and is important to remember that she may well be more open to infections at about days 7-14 as this tends to be the window when her immune system is at its lowest……. then the body recovers in time for the next cycle….. but the more chemo she has the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.

I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must call it in…….

This is especially important with regress to Sepsis as sepsis doesn’t always cause a high temperature though, especially if someone is taking steroids……. below 35°C could be a sign of infection which your immune system may be unable to fight so this needs to be called in.

I would also highlight the importance of drinking lots of water (the aim is 1.5 to 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps him well hydrated.

It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.

Based on my long experience we were not hermits….. we went out……. our mental health is importantly to consider.

Just not crowded places like supermarkets, restaurants etc. We would meet up with family and friends in a quiet corner of a garden centre….. fresher is a good healer…….

We had family (4 granddaughters) and friends visit the house. The main thing is check that folks visiting are not carrying a bug…. coughing, sneezing etc….especially children.

We would open the windows and let some fresh air in, good hygiene control…… We did this all the way through my main 2 years treatment 5 months of Chrome, 45 sessions of radiotherapy and 2 Allo (donor) SCTs….. and I did not have one infection.

If you have any questions do ask them. 

Thanks Roxy!  I'm dong fine so farand have great care team.  Maggie's Centres have lots of good info and access to help building confidence and getting through with your morale intact!

These Macmillan sites tell you so much about real patient experiences as well as professional advice.  Hope it helps you back to health!

Cecren