A Diary Of A Mesowarrior living with #Mesothelioma #asbestos — No Party for me just a Port fitted

 

 

 

 

 

 

 

 

Happy birthday to me on the 27th but I didn’t see much of it. Off to the Marsden to have a Port fitted !!!easy !!! WRONG!!

We got up at 4am to get on the road for 5.30am as the appointment was 7.30am

Lucky the hold ups weren’t to bad but the road was packed as it was the first day after the bank Holiday.

We had a great one as the sun shone and we also sold our Motor Home as we knew that time would come on day and feel it is the right time now.

We arrived and went to the ward but I was told we had been booked into Robert Tiffany ward.

We arrived a the Private Ward and it was very nice lots of nurses to make sure I settled in and socks on as well as a gown. Met the Doctor and then the long long wait.

I had been nil by mouth for 6pm the night before and no drinks after 6am Tuesday. We were so bored watching telly.

They finally came up for me 1.15pm.

I could have had extra hours at home.

The doctors were good and explained all the op and I had a cover over my head as he went just under my shoulder blade. I drifted off to sleep so I didn’t know much more and came back around while he was stitching me up.

You received local anaesthesia during your port placement. As the anaesthesia wears off, you may feel some pain and discomfort from your procedure. The site where your catheter was placed may be sore, bruised, minimally swelling or slightly bleeding. …Pain medicine works better if you take it before the pain gets bad.

They insert the port under the skin, usually on your chest, and the attached tube goes into a vein near the heart. You can see a small bump underneath your skin where the port is. A special needle is passed through your skin into the port to give your chemotherapy into the vein.

So judging by that info everything went well.

I was returned back to the ward and arrangements were made for a Xray to make sure it was in the right position.

I went for that Xray at 3.30 and had to wait for the results which were “Yes its in the right position”

I got dressed and went to Oak ward for bloods to be taken and it worked well.

I waited for the Doctor to come and see us but he wanted to wait for blood results.

“Please let me go home if there is anything wrong I promise to come back tomorrow”

I have been up since 4am I have been through all the hanging around for the Op with no food no water I truly have had enough. In fact I was near to rears with exhaustion.

as we walked out at 6pm.

Ray paid the parking £14.00 and I fell into the car.

There was an accident on the M25 and rubber neckers held our side up. We arrived in doors at 8.30pm.

As I said to my son I cant complain as what option  have I if I say this is to much I die earlier than I need to.

I slept all next day Wednesday was a blur to me. I had taken regular Paracetamol to dull the pain.

Today Im awake at last the pain has subsided. I do recommend a Port to a PICC Line honest.

I had so many Birthday Cards and messages on Face Book also lovely Flowers and presents cam through the post

burst

burst

 

 

 

I

Well its a couple of days now since we sold the van. End of an era. I miss not seeing it parked up. Stupidly I said today I wonder how it feels in a strange place where no one loves it. But we have memories of over 26 years camping. But now we are passed it.I hope someone buys it and gets as much pleasure as we did. We now have different priorities. Time to move on. We have been sorting through all the stuff that was in it. So manny clothes, pots pans crockery. We left so much in it because we dont have the room.

Its bye to my motorhome

After days of agony yes .no yes  .no. We have decided its time to let our loved motorhome go. We cannot  deal with maintaining it. We had a  nice few days last weekend but realised that camping is no longer for us. Now this new Marsden trial is to intense. So I am waiting feedback from a dealer. Now we have made our minds up it has to go.

I must start today to  empty it ,so much stuff in it. But all good things and that!.

A Diary Of A Mesowarrior Living with #mesothelioma #asbestos — A visit to the Assessment and Admissions ward The Royal Marsden

 

 

 

 

 

 

My tuesday appointment went well.

We had to go to Assessment and Admissions this time as Im going to have a Port fitted on my Birthday next Tuesday

Thats a great present –Not !!

I had a PICC Line last trial but Sepsis hid in the plastic and kept knocking me out at each infusion so a Port was thought to be better for me this time around.

I didn’t know it would be more involved and I have to go next Tuesday with a dressing gown and slippers and I will be given anaesthetic so I had to be assessed that Im fit enough. of coarse I passed all the tests  so Im ready now.

Off I went for a hot chocolate and up to see my team in Oak Ward where Rex took my bloods for the last time through my poor worn out vein.

Surprise though as my worn out vein has grown a new one. Rex explained this was called Collateral Circulation

 

 

 

 

 

 

Collateral circulation is a network of tiny blood vessels, and, under normal conditions, not open. When the coronary arteries narrow to the point that blood flow to the heart muscle is limited (coronary artery disease), collateral vessels may enlarge and become active. This allows blood to flow around the blocked artery to another artery nearby or to the same artery past the blockage, protecting the heart tissue from injury.

Well this can also happen when we damage our veins like mine are through 10 years of being used for all the Chemo and drug use for Mesothelioma.

The new vein worked so well we were OOing and Ahhing.

I saw the doctor and we talked about how tired I was over the weekend, my eyes and how they had got better and my Itching Oh Boy!! the Imminotherapy Itch is so hard. Always scratching especial when warm in bed at night.

Then we went and had some lunch but back again for that long boring wait in the waiting room for the blood results.

I did ask if we could go home but was told that as we lived in Whitstable they wouldn’t be able to call us back if anything was wrong, so Ray fell asleep waiting. The HYPER Trial can alter your blood count and you get to many white cells so I have to build the red cells up.

Anyway at 2 pm I finally got the go ahead that I was good to go and we drove back home.

Another long day.

But we are now free until Tuesday

A diary of a Mesowarrior Living with #Mesothelioma #asbestos — A whole week of visits to The Royal Marsden

 

 

 

 

 

A quick catch up for the week.

It has been a case of travelling daily to the Marsden for my Injection for the Hyper Trial.

This is hard a round trip of 160 miles each day is time consuming especially when your only in for a jab and then out again. What we mesowarriors do to stay in a trial is amazing really but the unsung hero is the carer. Ray never moans he gets up early and drives even if he does catch up with sleep when we are in the waiting room. Im sure other patients that dont know us must think Ray is the patient bless him!!

Wednesday was different as we carried on into London to the Foundations head office at 99 Gresham Street and had a brilliant board meeting with so much accomplished. The research grant has been chosen by the Board of Doctors and so we will announce and present very soon.

The bank is all sorted and Virgin is our chosen Just Giving so we are really set up now and happy.

We had to travel back to the Marsden and pick the car up, got home had dinner it was time for bed as we had to get up again to travel back to the Marsden again.

2 years of trail is beginning to seem a long time. I pray we see shrinkage at next scan.

Then my eye started playing up so we had to travel Friday to Ashdown near Epsom for the Eye specialist to examine my eyes.

He said that all the chemo and Immunotherapy is now telling and my age as well isnt helping. All I can do is find drops that help and really use all day long.

Ray and I slept most of Saturday we needed to catch up and now we have just to visit the next two Tuesdays to  have blood tests just to watch how Im tolerating the drug. It has been passed on mice but we have to prove humans can cope with it.

 

 

 

 

 

 

Yes Im a guinea pig but there is no alternative there ?

 

 

What a day.

Marsden day . A later start because they made appointment for Mavis`s eyes. we got  jab at 10 am free to go. But a taxi booked for 1.45 to go to Epsom Hospital. so we sat around waiting. At lat  1.45 Taxi arrived, Nice chatty driver we arrived at 2.20 booked in.

2.25 called in to see dr. Very nice informative  consultation.  2.40 all done back to Marsden 3 pm  paid for paring  left for home. 5 pm got home. Mavis has put cream in her eyes now she says she cant see.

Never rains but it pours.

Busy ole day

Early start ,off to Marsden. Mavis ECG was good Next she got her injection and we were done. But  we had to get taxi to Sutton Stn. The Train to London Bridge then taxi to  our meeting. That lasted from  12 to nearly 4 pm then Taxi back to London Bridge,Train back to sutton ,Taxi  back to  Marsden to collect car then my 70  mile  trip home. Shattered. Ready for Marsden again in the Morning.

First Injection Day

Another early day at the Marsden. Journey  wise it was a good one we arrived early. had a Hot Chocolate and then booked in. We were surprised it was  bloods  again. But  we got the first  injection drug. Mavis was dreading it. But good ole Rex put her fears at rest. What a star he is. After the jab we had to wait 2 hours but then we were free to  leave. So  it was not a bad day. I dropped off when  a nurse  gently woke me. I jumped out of my skin. But tomorrow is a bit later start so we get 2 hrs longer in bed. We  have a board meeting so we will need to  be completed quickly. Then its a Taxi and a Train into London.

Marsden

It was  the usual early  day up at 4.30 am  get ready for Marsden walk poor half asleep louis up the lane in the dark. But  M25  was good today we arrived at  just a little after 7.30. Went for a coffee well hot chocholate really.

Bloods done early Doctor early but more forms to sign. Now we wait for blood results . They were ok now we have to wait for  Bi op. But a hitch  no  forms signed  to agree to it. But  later we escourted to radiology. We met  her before . I asked if I can come in . Of course you can. Get mr nye a chair she said. Iwas sat while Mavis got comfy on the table. Did you want to come sit  closer  she asked. Yes please I said so she pulled my chair  right up to the table. She explained everthing very clearly  she was so lovely and understanding. I held mavis hand throughout the procedure as they took 6 segments for a bi opsy. mavis was so brave. Afet she was wheeled back to the ward  we had to stay 2 hrs to make sure all was well. We got  back home at 4.30pm. Tomorrow is another day. Hope its not as long but she gets the first  injection of the new drug. She was told that there are several tumours clustered. But  they are not yet as large as her first ones and they are slow growing and that  things dont look so bad.

So its WTS.

A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos –A catch up on Mannington Essex, Quex Park Camping and The Bi-Op at the Royal Marsden

A catch up

 

 

 

 

 

 

Thursday we headed in the Motorhome to Tattingstoke Ipswich to see a Mesowarrior Sue who we have been friends with for sometime but never met.

It was way back in May when I got the message—  Dear Mavis In July I will be President of our Rotary Club and we are required to choose some favourite charities to support. One of mine will be your Foundation so on a Thursday evening in Manningtree Essex. I do hope this will be possible. Hope all is going well with you and Ray – Warmest best wishes

Of coarse I agreed and saw it as a way to get us on a break for a weeks holiday.

That went out the window as all my new trail dates came through on the same dates so I managed to get to Sues Thursday and then come back to Quex Park as the weather was turning and the forecast was high winds.

It was lovely with Sue it felt like we had seen one another before. Social media is a weird thing mind you Louis found a best friend and followed Sue everywhere and also tour her hose on his own. He really settled in.

She presented me with a wonderful dragon fly broach so pretty.

We had lunch and a whole afternoon of wonderful stories of her fascinating life and family.

 

 

 

 

 

 

It was soon time to go to the Rotary Club in Mannington and we travelled in her car.

We met a great bunch of people all the members were so sweet and so friendly.

After our story of our journey they presented us with a cheque for the Foundation. So kind of them all.

 

 

 

 

 

 

 

 

https://www.rotary-ribi.org/clubs/homepage.php?ClubID=1418

https://www.rubylane.com/shop/suzylemay 

If you love Antique Jewellery you will love Sues Shop

So thank you Sue we had a wonderful time  –we will be back xx

The journey to Kent on the Friday, to Quex Park, was great but the wind was getting up but we were soon settled into the camping field and talking to our good friends.

So relaxing and we shopped in the Barn wonderful fresh farm products there’s nothing like it.

Sunday was a display of horses trotting around the field as we sat there.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Not good pictures but the phone played up just at the wrong time.

Anyway after lunch we came back home unloaded the Motor Home and bed early to go to the Royal Marsden.

I was put into a bed and bloods were taken early. I was praying they were not long with the results and they didn’t do to bad we had them by 11.30.

So just as my lunch was ready I was taken down to the scanner to assist in my bi-op.

Ray was allowed in and a wonderful caring Radiologist/doctor prepared me under sterile sheets and turned the screen on. There he was one of the Mr Nasty glaring at me. grrr

She goes in with a longer needle putting in a numbing fluid then withdraws and then a longer needle and Im watching on the screen. I said -if only you could get him all out, take him away. She said if I could I would this is a horrid disease.

Oh boy dont I know it.!!!!

Although it is all growing on the Lung Im at a better position than 5 years ago. If this drug works I might get another 2 years freedom.

She caught the muscle between the ribs so that was a bit painful but really it wasn’t as bad as I thought and she clicked away for 6 times. They wanted 6 samples to work with. I dont know why? Its funny how we dont ask questions isn’t it.

That was it all done so back to the ward and lunch. I had some Paracetamol it isn’t painful just a weird feeling of tightness, heavy around the area.

I was soon allowed home  but back tomorrow for the first drug injection in the tummy.