Chemo - halfway? Maybe baby!

Lots of people have asked 'What is chemo like?' so this blog post describes what chemo is like for me.  Everyone I've spoken to who has gone through this has had a different experience.  So don't assume that it's like this for someone you know who is going through it, or if you get told you need it at some point.

I've now done 3 rounds of chemo and according to my notes this may be half way! They states 6 - 8 rounds so I'm being hopeful for now.  I'll know soon as after round 4 I will be scanned again to see what is happening in my lungs.

A 'typical' chemo day.

Wake early! Get up, do PJ yoga, which is as it sounds, yoga in my PJs.   Currently doing Ana Forrest's 'Strength & Spirit' DVD and loving it (though doing humming bee breath in place of breath retention).  Have shower, shake out more loose hairs (and being grateful that I still have some), get dressed (in comfy clothes).  Go out and walk dog on the field, take off shoes, walk barefoot and 'ground' for a bit.

Get picked up by Mum or Dad (they are currently sharing the 'coming with me to chemo' duties), and get to the Queen's Centre at Castle Hill, Cottingham for an 8 or 8.30 am blood appointment.  I just need to say here how lucky we are here in Hull to have this Centre of Excellence on our door step.  This centre offers chemo and the next closest (I'm told) is Scarborough.  If you were to need Radiotherapy, the centre covers right up to Whitby, down to Lincolnshire and across to York.
Have blood taken.

After blood, take form to next waiting area, get weighed (they are obsessed with weight, I know lots of people lose weight with the treatment, or gain weight because of the steroids) I have no clue what I weigh and am not interested in the number so never ask.  If my clothes fit (living in my denim shorts currently) I'm fine, if they are tight I'll stop eating so much (cake), if they get loose I'll eat a bit more.

Wait a bit and see the Doc.  I'm under Dr Bailey in Haematology and he's great.  I usually get to see him, but when I see someone else that is also fine.  My lovely Cancer Nurse Specialist is Kay Beadle and she is usually in the appointments too, and available to chat if I need to talk more too. Discuss how I've been since the last treatment and any side effects.  Possibly change the drug ratio, or given additional prescription of more drugs.

Next it's through to the Chemo unit. This is a big and busy room, so many people needing this cannot be right! There are a few beds in here, for first timers and those who are really poorly and need to lay down, the rest of the room is full of comfy chairs which recline, should you choose, and are all facing out of the window to look over the East Yorkshire countryside towards Skidby Mill in the distance. There is lots of chat in here, the staff are all incredible, offering hugs alongside the treatment, always appreciated!

Have a cocktail of pills, including paracetamol, steroids, anti-sickness drugs and an antihistimine, I'm getting so blase at this I've probably forgotten what they all are.  And then you get 'plugged in'.  I usually need my hands soaking in a bowl full of warm water so that they can find my veins, (you know the old saying, 'cold hand- need thicker gloves...') so they can get the cannula in.  Others may have this in other places including in the arm or directly into the chest.  Once I'm plugged in then they pump in a variety of drugs.  My particular cocktail is R-CVP.  See here if you want to know more about this particular cocktail from the brilliant MacMillan page.  These cocktails are all made up on site on the day, so they are only made if my bloods are ok on the day, so nothing is wasted.  Get plugged in and then sit for a while, sometimes quite a long while.  It is possible to walk around, to go to the loo, to go outside onto the patio etc, just that you are attached to a pole on wheels wherever you go.

There are other treatments going on in this room too, for example some people will be having different parts of bloods pumped through them. Some will be in for just a short period of time, and others for longer.  Lots of checks are done during treatment, starting with 'obs' every 15 minutes (blood pressure/temperature/heart rate/oxygen level/pain level/state of consciousness), and then allowing a bit longer between as the treatment goes on.  Beeping is commonplace, with the chemo machines beeping when they are done, or if there is a problem. When I come home I still hear the beeping, just like when I worked in hotels (many moons ago) I used to hear the phones ringing when I got home at night!

If all goes well, the treatment finishes and they flush you out, finish you off, take out the cannula, collect a bag full of drugs for home and get to go home.  I've been really lucky and not had any major adverse reactions to the chemo, apart from a slight 'reaction' in my throat, in treatment one. Not all are so fortunate. Amongst the people I know who have been through treatment I've heard of many different reactions, including some needing hospital stays at the point of chemo or admissions from side effects.

My treatment cycle is a 21 day cycle, so I have treatment, and then 21 days later I come back for the next round. Again this is something that differs between people.  I know of some who need chemo daily. There are also different types of delivery including tablets.

Side effects...  The list of side-effects from chemo is long and varied and all will experience these differently.  For me again I've been really lucky in that I'm not having too many at this point.

Risk of infection - R-CVP reduces the number of white cells in the blood, making me more at risk of infection.  I have to be careful not to be around people who are ill, not spend time in close proximity of large crowds (where I wouldn't know if people were ill), not to go on public transport and generally be sensible in the choices I make.  For example I was going to go to Park Run at the Humber Bridge this weekend, but woke with a slight temperature and a sore throat, so made the sensible decision and went back to bed with a cuppa and read for an hour instead!

Hair loss - some, the hair on my head is A LOT thinner than usual, but after three treatments I've just booked in for a hair cut that I never expected to need.  My eyebrows are a little thinner, but as I said in the last post, I'm still having to pluck my chin!

Sickness - after the first treatment I was very sick, but only for the first day following chemo.  After session 2 they gave me better drugs so was much better, and by session 3 we'd nearly got it sorted so that I was only queasy and a little sick very early on the Saturday morning before I'd got more drugs inside me.  I don't plan anything for chemo weekend, and spend the Saturday morning either dozing in bed or watching Saturday Kitchen planning the things I'll cook once I feel like eating again.  As I fast for the day before chemo, the day of chemo and the morning afterwards, good tasty food becomes really important to break the fast.

Tiredness - Chemo makes you tired. Period.  There are various levels of tiredness.  When I asked one of my lovely friends about coping with chemo one of the things she said was that there would be days when I would be so tired I wouldn't even be able to lift a cup of tea.  Thankfully I have not experienced this yet, and hopefully I won't.  I have however, been exhausted after getting up and having a shower, and had to go back to bed for a couple of hours.  Walking the dog is mostly ok, though there are days when even a short walk exhausts me. And yet most days I can still walk the dog (often twice), do a yoga practice, and go out and about and see friends and potter a little at home.  For this I am very grateful.  Those days when this is not possible I'm getting through box sets (currently Big Bang Theory, House, Mad Men and more recommendations welcomed!) & lots of books.

And following on from that, sleeplessness - Steroids keep you awake!!  I know this is not news to many people, but having never had them before I wasn't quite prepared for this.  After my first treatment I was awake for 3 days solidly and was hallucinating!  Thankfully I then slept (I was snoring when Al came up to bed that night, so he was happy for me, maybe not so much for him though!)  After that first treatment I asked for and was given sleeping pills to counteract this.  For someone like me who rarely takes tablets of any sort, choosing to take extra drugs is something I did not think I would do, but have decided that I have to give my body the best chance and I know that sleep is an important part of healing.  

Bad Mouth Taste - Chemo tastes horrible!  Or at least it does for me.  I've been told that pineapple helps to remove this, though I can't eat pineapple - sets my non-existent gall-bladder off!  Werther's Originals work though, so I always have some to hand.  This taste comes and goes over the 3 weeks, and seems to be worse when I feel worse.  Cleaning my teeth helps though you can only do this so many times a day & night (I have got up and cleaned them in the middle of the night as I taste so horrible)! A sore mouth is also a side effect, and a baby toothbrush is recommended so that you are gentle with this.

Constipation is something that apparently is very common but I'm pleased not to have struggled with, and I'm sure that's thanks to yoga.  The advice is that you have to contact the hospital if you don't have a bowel movement in 48 hours!!  That said my gut bacteria is altered by the drugs.  But that is probably TMI!

Numbness or tingling in hands and feet, peripheral neuropathy.  This is wierd.  My fingers have lost feeling at the ends, and my right foot has got quite a lot of numbness. I also have odd pains in the foot and up my hands from this.  I'm trying to keep the nerves working as much as possible my learning new intricate skills with my hands, I'm braiding Claire's hair, learning new braids (thanks Claire & YouTube) and learning to crochet (thanks Sheila).  I also do regular yoga nidras and send the awareness to my finger tips and into my feet.

Nail changes - they are now crap! Have all broken off, and continue to break off,

Other side effects I'm not experiencing,thankfully and the ones I am experiencing are all manageable.  Obviously I'd rather not be having chemo but, for now, it's not quite as bad as I expected when I was first told I needed it. I hope that I'm only going to need 6 cycles, and if so I am half way there, but if it has to be 8 then it has to be.  Either way, I know I'll be done before Christmas, and that will be the best Christmas present ever!

Bits & Pieces

It's been a while since I posted, not least because there has been A LOT going on in our lives... but here are a few 'Bits & Pieces'.

Firstly, Bits

'In bits', is the term I use when there is just too much emotion going on in my head and I'm finding it difficult to deal with.  It's not something that I use often, but some days, it's the only way to describe what's going on.

A few weeks ago now (17 July)  it was Race for Life in Hull.  It was a Sunday.  Now we were already in for a bit of a rough day. We were having a small private memorial service for a very much loved family member, and if that wasn't enough it was getting close to the time when my sister was leaving to go home to Canada and it would be the last day we would get to spend together with our Mum & Dad.  There was already quite a bit of emotion flying around - sadness, grief, trying to still enjoy the time with my family at a very tough time, wanting to be strong to support other family members but feeling that I had little strength left for this, grateful that it was sunny (rain always makes me, like many others, even more depressed, and would have been more than I could have coped with at that point), hugely thankful as always for the support of those around me, particularly at this point my hubby Al, and daughter Claire.

Anyway, I picked up my phone in the morning as you do, and saw I'd been tagged in a post by the lovely Pauline Barton, one of my regular yoga students.  She was doing Race for Life, her 18th time out of 19 races, huge respect for that Pauline, and this year she was running in my name. Well to say I was touched is an understatement,  A little later, I saw that I'd also been named by Dawn McKie (Facebook's creator of Mummy Friends), one of my YogaBellies mummies.  OMG I was IN BITS, without a doubt this is one of the nicest thing that anyone has done for me, but the very fact that I needed someone to do this in my name is still a shock. My daughter Claire came in and saw me and just gave me a big hug, held me for a while, just what I needed. And then made me a cup of Earl Grey.

Both of these lovely people have sadly lost their mum's to cancer, so they know the journey and how much support means.  Please know that there is certainly no blame to either of these wonderful women for this.  Just on that day it was all a bit much, I was so, so touched by these gestures.  

A couple of weeks later, it happened again.  I've been self-employed for 5 years now, and so 'asking permission' (from anyone about anything really) is not something I have to do much of these days.  Lymphoma has created a need to ask permission to do stuff and this freaked me out a bit!  I was booked to run a yoga retreat in Morocco, I'm not allowed to do it (dates clash with my chemo dates/not allowed to fly currently/too much risk of infection). I wanted to have a massage, I'm not allowed, I have to ask permission ( I now have a letter saying I can have 'light massage').  I want to do Vipassana (a 10 day silent meditation retreat), I'm not allowed to do it  (again too much risk of infection as it is at my most vulnerable time, I have to wait til the end of chemo)  I thought this was the perfect time to do Vipassana, I didn't have to take time out of the business for once!  I wanted to go to an event, (the Spenser Tunick blue photo shoot, a festival) I'm advised not to go!  IN BITS yet again.  Frustration, depression, grief for things lost, wanting to stay positive but finding it hard.  That night it was Allan who held me, all night as I cried it out.

So, In Bits, for me, is the pits.  If I ever say I am, hold me, hug me, possibly feed me - protein - I will already have eaten half my body weight in chocolate or bread! Take me home, and if I'm already at home and still not dealing take me to the beach for a paddle, doesn't matter what the weather is.  Oh and a cup of Earl Grey always helps.  This might not be the same for everyone, but for me, this is what I need.

And secondly,  (Hair) Pieces

So chemo, one of the first questions to me is (usually from women), will you lose your hair?  Well it looks like it's going now.  I realised this a little while ago when one morning I'd had my shower, I picked up the towel to get dried and rubbed my head first, as I do, then dried my face and wondered why it felt all hairy.  As I now have peripheral neuropathy in my fingers I couldn't quite feel to take them off, so used a non-hairy part of the towel to get clean again, and then dried the rest of me and shook the towel out in the bath.  Result, LOTS of short red hair all in the bath.  I didn't think losing my hair would be too much of an issue to me, it's never been a massive thing in my life, and I've always had very thick hair.  When I'd thought about it before I started my chemo I was more stressed about the idea of losing my eyebrows. Now it's stressing me out! There is no longer much to grab hold of, and lots comes out daily, but I have a selection of bandanas purchased, am looking at lovely beanies, and thinking of a couple of funky wigs, bright and brash, If I'm going to look different I'll look very different.  The lovely Milly Rose who does bump painting for my YogaBellies is going to do me a Henna tattoo on my bald head too! 

Oh and by the way, I'm still plucking out the sparkly silver hairs (vanity obviously has no bounds), and also having to pluck my chin, maybe that will end soon! The eyebrows are also thinning and will get those tattooed when I can (I'll probably not get permission until chemo has finished now!!!) 

But while I'm still on hair, the lovely man who is my amazing husband said that in support of me going bald he would shave his head.  I balked at this, what if I didn't like him with a bald head, yes I realise what I said there, what if I didn't like him with a bald head!!!  I was expecting him to still fancy the pants off me (his words!)  So I realised this was a bit crap of me, but if he was going to do it, I thought he should do it for charity.  He didn't think this was a particularly good idea, but I convinced him it was, so he signed up to Brave the Shave for MacMillan.  Within the first day he had surpassed his estimated total and he is now well on the way to £1000.  If you feel able to do so please pop over to his page and drop this amazing charity a little of your hard earned cash.  Local people can also pop into MKM Beverley and pass the cash over to him.  
https://bravetheshave.org.uk/shavers/allan-medhurst/

For those who have already donated, if we've not thanked you personally we don't have your contact details through the charity so might not be sure who you are if we have more than one person of that name in our lives, but we certainly thank you all.

The Brave the Shave event will happen at MKM Beverley on Tuesday 30th August at approximately 2pm.  Allan has even managed to persuade some work colleagues to join him.  There will be pics and a video so will share those when the time comes.  If mine is at the stage it needs shaving (if it hasn't all gone by then) it will be done at the same time.

Also, on the hair front, Claire, is not shaving her head, but is growing her hair and will donate it when long enough to do so via  http://www.littleprincesses.org.uk/  I'll let you know when that happens too and share pictures.  It's got a way to go yet as has to be at least 7 inches lengths to cut off to donate.

That's all for now folks, I've got a few drafts in process so plan to be a bit more regular posting from now on. Let me know what you think. xx